Recently been diagnosed with Stage III Rectal cancer. I will be going for 5 weeks of radiation and chemo and then surgery. Feeling very scared. Need to take care of family and small kids. Wife do not work.

1. What to expect from surgery ? (pain, recovery time i.e when can I go to work which is mostly sitting and typing etc) ? Doctor says it will be temp colonostomy, with 6 month of chemo after surgery.

2. I had first radiation today and chemo also started. I am already feeling a burn feeling in lower abdomen, is it in my head, or can the symptoms start that early ?

3. Any advice, that may help me.

Thanks

Tahb, Im sorry to hear your news. I cannot really give u much advice as I am kind of new myself. I have to undergo radiation and chemo soon also, but have had surgery .. 18" of bowel out. With a sitting down job, after surgery you should be able to go back at 6 weeks.. but everyone is different. SOmeone else here will give you more advice..
Just want to say take care and that you certainly have come to the right place for advice and support. They are all wonderful here.
Goodluck.
Maz

Hi tahb :wave:

Sorry to hear of your diagnosis. My DH had to have surgery first then chemo and stuff and then radiotherapy/5fu. He had skin burns pretty much from the first week onwards and he used an acquaeous cream made up by local chemist. He was also given lots of advise about not using shower gels, shampoos, etc which contain metal elements (which most of them do).

Good luck
ktee

Hi,
I am so sorry to hear about your diagnoise, I completely understand. My dad was diag with Rectal cancer stage III last Oct. He went through 6 weeks of chemo/radiation . it was really tough on him, not only has the skin burned to black color (ur abd area), but u will bleed and in some pain and Diarrhea ... Then he rested for 6 weeks, then had a surgery, which took off 12 inches of rectal area, the surgery went really well. He was only in the hospital for 3 days and he recovered for 3 weeks, then started 16 weeks of chemo (which is once a week for one hour). Then, he will rest for few weeks, then he will go have another small surgery to reverse the Ieostomy (since after the first surgery , he had to wear a temporary Ostomy bag).
I would say u should be able to go back to work after 5 weeks of treatment, then after 5-6 weeks of recovery time, which u should be able to work at least part time, then u will need the surgery, then at least 2-3 weeks of recovery before working again. The chemo after is not so bad, so I think u can work while still going through the treatment.
I am praying for u and ur family.

Daisy

TahB:
It is NOT in your head. Radiation and chemotherapy and healing times from surgery are different for EVERYONE. I am Stage 3C Rectal Cancer Survivor. I had 6 or 8 weeks of chemo and radiation first, then the resection, temp ileostomy... a terrible time healing due to the chemo (they say), an ileostomy bag for 5 months-- wasn't bad at all, then reversal, then I began my postop chemo which was horrible. I had 6/10 positive nodes and am only a 32year old male. My oncologist wanted to really treat me aggressively, or so he says. Well in my eyes, he REALLY overdid it, and I could only get through a third of the regimen. I still have problems, chronic pain, problems with urinating, fecal incontinence, etc.

I had burns from the radiation which I still believe are a factor in the severe pain in my hips. And horrible sores in my mouth from the chemo. Anyway, that's my story. Everyone has a different one. Don't be afraid to tell them you need pain meds though. They will prescribe for you to make you more comfortable.

God Bless. And Good Luck. Please keep us posted.
Regards,
CancerDad :angel:

BTW I was out of work from month 2 of pre op radiation, and am still out on disability. Again, EVERYONE is different.

TahB: I am also very sorry hear about your dx. I am also in a similar situation with 7 month old baby and my wife being a homemaker (I am 37 years old). Families, friends and boards like this play a great role in helping to tackle the early blues and panic. I also turned to spirituality, which I found very helpful as well.

I finished my six-week chemo-radiation just couple weeks ago, will undergo surgery in about a month. Please get a good diet book for cancer, healthier you go into the treatment, easier it will be on your body. I experienced some nausea from chemo that was kept under control by anti-nausea medication (try Zofran). Well into the third week of my radiation, I start having some side effects, but it was still not too bad. My fifth and sixth week by far were the worst, with intense pain in my back during BM. I was given some pain medication and suppositories to control the pain, but it just helped a little.
Now it's been two weeks since the last day of chemo-radiation and I feel almost as well as I felt before the treatment. I do have darkening of skin that started to peel off, but no bleeding or pain.

Hope your treatment goes well. Please keep us posted on your situation.

Mazrose, ktee_uk, tigerfish, CancerDad,

Thanks for replying. I also red your other posts. Now I am on second day of chemo and radiation. Nothing to report there. But the PICC line which was put in last Wed in my arm for chemo, still hurts bad.

I will keep you posted and will also learn from your other threads. Please keep on checking this thread, when you get a chance.

Wishing you all the best.
tahb.

Pasha_nj,

Thanks for posting. My best wishes and prayers are with you. Keep me posted about you and keep visiting this thread. Most of the time I pray that nobody should have any type of cancer and also a decent cure is invented quickly.

I will keep everybody updated about me in this thread.

Wishing you all the best.
tahb

Mazrose, ktee_uk, tigerfish, CancerDad,

Thanks for replying. I also red your other posts. Now I am on second day of chemo and radiation. Nothing to report there. But the PICC line which was put in last Wed in my arm for chemo, still hurts bad.

I will keep you posted and will also learn from your other threads. Please keep on checking this thread, when you get a chance.

Wishing you all the best.
tahb.


Hi tahb
Good to know you are into your routine. Have you told anyone your picc line still hurts? They might want to check it out ....... they might just need to give it a wiggle. Husband used to tell me it didnt hurt but he could kind of feel it in there and his arm ached a little for a few days after it was first put in. I got him to sit with it elevated and put one of those microwave heat pads on his upper arm.

regards
ktee

Yep I told them about the pain part. My heart beat was also high (115). They did X-RAY. Doctor looked at XRay and said it is fine. My heart beat has come down to normal now. Today I am feeling less pain. The doctor and nurse have asked me to call if there is redness or swelling, but there isn't any. I am feeling better now and pain seems to be reducing.

Yep I told them about the pain part. My heart beat was also high (115). They did X-RAY. Doctor looked at XRay and said it is fine. My heart beat has come down to normal now. Today I am feeling less pain. The doctor and nurse have asked me to call if there is redness or swelling, but there isn't any. I am feeling better now and pain seems to be reducing.


Thats good news tahb. It is a weird feeling to have a tube sticking out of your arm i'm sure and a little worrying too. My husband decided to view it as a piece of body piercing so he felt kind of trendy about it :jester: :D .

regards
ktee

ktee_uk,

There is no tube sticking out of the arm. Everything is inside the arm. There is titanium cube kind of thing (about 1 cm cube) with silicon button kind of thing on top. The whole thing is inside the skin. To connect the infusion, they just poke the needle into that sillicon button through the skin. Today they took out the needle for a week break in chemotherapy. So now nothing is coming out of skin. Ofcourse the stitches are there which will come out on Moday.

tahb

I am into 3rd week of Chemo+Radiation. So far so food. Nothing that I can not handle except for pain while passing stool. The pain is like rubbing salt on open wound. Seems there are cracks inside rectum. I have to go about 3-4 times in morning so it is very painful. I will be meeting oncologist tomorrow. But anything I can do to reduce it. It has reached at unbearable level ?

Hi Tahb,

I know exactly what you are going through, went through the same experience just last month. The pain is so intense during BM that you definitely need to use several forms of medication in order to subdue the pain. I used numbing jelly, suppository, and a pain medication all simultaneously; the pain was still pretty intense. This will continue until about a week following your last day of treatment, then it will get better gradually. In the meantime, try everything available to ease the pain.
.

I am into 5th week of Radiation + Chemo. It will continue till next wed (6 more radiation left).

Having severe (at 9 in scale of 0 - 10) burning while passing bowels. I usually pass 2 - 3 times in the morning. First one is a bit bearable (relatively) but second one and third one (if any) are killers.

Dr prescribed Annusol Suppositories and also Proctofoam. None of those helped.

He has prescribed Vicodine (narcotic pain killer). That is a help. But I am scared of such pain medicines.

Will be meeting the sugeon in sometime next week. He will decide the surgery date.

I am just scared of the pain surgery will bring and of the existing burning whether it will go away.

TahB:
Please DON'T be afraid of using Vicodin... It is NOTHING when it comes to narcotic pain killers. I know how you feel, and was the same way though in the beginning of treatment (reminder, I'm 32 year old male with Stage 3C Rectal Cancer... Still loads of problems, including pain!!!--- I'm on the heavy stuff now!) Don't subject yourself to pain. It just stresses your body more. Think of it this way, by providing yourself some relief, you are ultimately helping your body eradicate that cancer!!!

Hang in there!
Fondly,
CancerDad

Vicodine really helps. I have started taking it. ButiI try to keep it to minimum.

Another 3 days of radiation and 4 days of chemo. My surgeon say he will schedule surgery for Mid July.

Is it too late surgery ? It will be more than 8 weeks since the completion of Chemo and Radiation ?

Any thoughts/pointers links will help.

tahb.

Your surgeon probably wants to give your body a chance to recover for the chemo/radiotherapy. Don't forget, the treatment lowers your immune system so you have to build that up again. Let us see what others think about this.

Update:

Radiation stopped on May 11. (28 sessions)
Chemo stopped on May 13. (6 weeks)

The burning during bowel movements is gone.
Pain gone.
Blood in bowel is reduced alot (almost to nothing).

Surgery will be in mid july.
Looks like liver lesion is a cyst (this was worying me alot).

Just waiting for my surgery to get scheduled. But worried that it is too
faar from where they stopped radiation and chemo.

This is my update.
tahb.

Makes sense to me that they would want you to take a break before the surgery. 8 weeks does not seem like "too" long. It feels like forever when you're waiting I know!

Your body has just waged a war against itself. It's good to let it heal and recouperate before undergoing surgery. The surgery itself, as I'm sure many would attest to, is challenging to say the least and will require all of your energy and effort. You would not want to risk infection post-op.

It sounds like great news w/ the new liver results. Things will hopefully become clearer after surgery!

Best wishes...patient and peaceful waiting to you!
~P

I know 8 weeks seems long, but your body has been through a lot and needs time to get back to "normal". Like Allison said, your immune system was weakend, also your blood needs time to get back to normal-your red cells, white cells and platelets can all be low. My oncologist told me when I finished chemo, don't get my eyes checked for at least 3 months and wait at least 4-5 months to have a colonoscopy. Your body really needs time to readjust.

Surgery date is July 6. Will try to post as soon as I can after surgery.

I will be praying for you. I am a survivor and i am praying you will be too.
Thank you fro sharing your story, looking forward to hearing good news soon.
jeannie

Well, I will be starting my prep for surgery tomorrow and surgery is on Wednesday. Nervous, but happy that this thing will out of me soon. I feel like I have alien inside me and it is going to be taken out (too much of scifi movies).

Will post after the surgery as soon as I can.

tahb.

Hope this gets to you before your surgery.....all the very best. We will look forward to hearing from you as soon as you are able to post.

Take care,

Goodluck TAHB...
Hugs..
Maz

Back from Surgery. In lot of pain around illeostomy specially after 1 hr of eating because of gas and food movement. Can sit up 2 - 3 hrs/day Can walk about 50 feet for 4 times a day.

Surgeon took out 1 ft colon, rectum, sigmoid, appendix, part of liver and dirty fat behind rectum.

3 of 12 Nodes positive.

I was in high spirit till about an hour back when doctor called with pathology rep of part of liver surgeon took out. That tested positive hence now mets in Liver.

This news is breaking me. Please help. What are chance of me living next five year in a respectable way ?

Hi tahb

Sorry to hear your news, but the chances are still good.. CD needs to answer you on these questions you have, and Im sure he will. Stay positive and know theres alot they can do to cure cancers these days.

My thoughts are with you.
Goodluck and take care of you!
(hugs)
Maz

Back from Surgery. In lot of pain around illeostomy specially after 1 hr of eating because of gas and food movement. Can sit up 2 - 3 hrs/day Can walk about 50 feet for 4 times a day.

Surgeon took out 1 ft colon, rectum, sigmoid, appendix, part of liver and dirty fat behind rectum.

3 of 12 Nodes positive.

I was in high spirit till about an hour back when doctor called with pathology rep of part of liver surgeon took out. That tested positive hence now mets in Liver.

This news is breaking me. Please help. What are chance of me living next five year in a respectable way ?

Tahb:
In all honesty... too soon to tell. We need to make sure the surgeon got good margins (took out enough around the cancer) and what stage you come back. 3/12 nodes is NOT bad. But ultimately we need to wait... I'm sorry, I know waiting is murder. If you have a copy of the histology report... post what it says so I can let you know.

As far as ostomy pain goes... It WILL GET BETTER!!! Right now, it's very important to eat frequent small meals to keep the acids in your stomach down in case you leak at you site. Also, if you do leak, dry it off and change the pouch immediately! Use powder around it after your protectant.
It's also very important to use your pain killers... the more you move, the better. Don't overdo it though!!! But take the pain killers, and loperamide (immodium) and or Lomotil if you have it. This will help dry some of the output and slow it down. It's very touchy in the beginning. PLEASE, DON'T Get Discouraged. You will learn to live with this!

Take each day as a challenge to push a little harder.

Hang in there!
CancerDad

PS You can also take some acid suppressors like H2 antagonist kind...like Tagamet HB or Zantac. I would stay away from the PPI's though.. like Prilosec. You don't want to suppress the acid that much.

dear tahb

so sorry you find yourself further along the road than you anticipated. as cancerdad said, please please do not be discouraged. please remember my posts about my husband ...... he had approx 75% of liver removed because of mets. he is currently disgustingly healthy, fully active, fully alive. he goes to the gym 3 times a week, cycles 10 miles four times a week, works fulltime, enjoys holidays to the med, spends too much time down the pub and has not finished that list of jobs yet.

he was diagnosed in April 2003 so we are well over the 2 year mark. he now has follow ups every 6 months and at the end of this year they will only need to see him once a year. his liver surgeon talks about him being a curative patient. although husband had and probably still has his dark moments, he was always positive about the treatment path he took and worked with the docs to bring about the best possible outcome.

please try to lift your spirits. understand that you are still recovering from your major surgery and that this will naturally make you feel low. concentrate on the immediate hurdles regarding your recovery path ..... build on your progress so far...... you are doing so well to be sitting up so long and walking around and coping with ileostomy.

with you new results, it will undoubtably bring about lots of new questions to ask your docs. do you know who you are seeing next and when? we are all thinking about you on the boards and want to help you through it.

take care and keep posting
regards
ktee

Thanks ktee, CD, Maz, Alison ... for all the support. I am posting some reports here.

Final Pathologic Diagnosis:
A: Liver biapsy: ...
- Liver parenchynw with metastatic adenocarcinama cansistent with colon Primary.
- Tumar size, 0.4 cm'
- Surgical margins, negative for tumor.
.
B: Rectum and sigmoid:
- Residual tubular adenama with marked dysplasia and faci af invasive adenoca.rcinoma involving the submcosa.
- Metastatic .adenocarcinama in 3 out of 12 regional sclerotic lymph nodes
with focal extensian into the perinlodal fat. - Surgical ,margins, negative for tumor (see case summary).
C: Anastamatic danut: Colonic wall, no pathalogic diagnosis.
D: 'Appendix: Vermiform appendix, no. pathologic diagnasis.


--------------------------------------------------------
Sorry for spellings above. The OCR cannot recognize all the letters correcltly.
--------------------------------------------------------

So that was mixed report of surgery. Liver had metastatic tumor (bad). Now it is out with clean margins (out).

Now doc concern is lymph node in aordic discribution in peritonium (which was diagnozed in CT before surgery) and some bony cysts in femur.

-----------------------------------------------------------
I had whole body bone scan yesterday. Report will come in 3 - 5 days.
I will be having CT scan tomorrow.

Will be starting Oxyplatin+5fu on 12th.

-----------------------------------------------------------
This illestomy is very painful. If I eat some solids (semisolids) I get
lot and lot of pain in back, chest and stomach. Which starts 2
hours after eating and lasts for about 2 hours. It is really unbearable
pain. It happens in evening (after dinner). I have tried sitting, walking,
Gas-X. Nothing helps. It is time when I wish from god, that either cure me
or take me away. The pain is so intense. Yesterday I had 10 spoons of
rice at 11:00 am (no spice, just soft boiled rice) and then 15 grapes
without skin and seeds at 3:pm and I had sever pain. Yesterday doctor
told me to switch back to liquid diet and start semisolid again after few days.

Any pointers experience for illeostomy will help. How may days after surgery, this thing is painful, when should I expect doctor to intervene to check for obstructions or slow stomach ?

Thanks
tahb.

Tahb
First of all... to get rid of some of that ostomy pain, you need to eat small frequent meals to cut down some of that acid production... also start on an H2 antagonist ASAP. Like Tagamet or Zantac... I'm sure they had you on this in the hospital, and if you tell your surgeon you are taking, he/she won't care.

As for Path report:

They took the liver tumor with clear margins... this is good. The only really semi-bad thing I could make out--- I'll look at it again tomorrow, is that you did have 3/12 positive nodes... which really isn't that bad. The bone cysts would concern me, but you had a scan... no sense worrying. You should get results soon enough. Because you had the mets, and the positive nodes and the bone cysts, the onc is going to treat you aggressively using an additional chemo agent. Oxal is not too bad-- wasn't for me except the numbness in the hands.

I will read more later and try to decipher.

Regards,
CD

I am done with 8 cycles of oxaliplatin in last 6 months. I am on every 3 weeks instead of normal every two week as my blood counts take about 3 weeks to come within allowable limits of chemo.

The side effects increase with each cycle. My biggest problem is now severe sore throat with very bad taste (bad means horrible).

Ileostomey pain has gone. Also one visit to emergency room with 2 day visit for sever pain (9 on scale of 1 to 10) with lots of scans and test didn;t find any thing wrong. I was on nexium for about 30 day after emergency room visit. That seemed to help.

CEA are in control. Liver still has one 3mm leision but is stable and not increasing. One lymph node in peritonium (spell ?) distribition is still enlarged, but seems to be somewhat of low density and is stable.

I will be having 4 more cycles (actualy two cycles with two infusions each) in next three months. Then PET, CT, MRI scans and ileostomy reversal.

Just one thing confuses me. My CT scans showed a leision of 3mm (that was earlier last year). My surgeon says he removed a part of liver and found it to have very tiny tumor (0.4mm) which was cencerous. He said that during surgery he did not find any thing else. But the latest CT scan (Aug 2005 and Dec 2005) shows that liver still has 3mm leison. Now only next surgery or MRI will tell what it is.

Now I have started taking things very lightly and live as I do not have cancer. Though I seldom go out of house (once every 2 - 3 weeks). Worst that can happen to me is that I will die, now I am not scared of dying any more. My family will do good financialy but it will be very difficult for them without me around and that is what keeps me going and figting this cancer and doing big compromises in my quality of life.

Update after a long time.

Finished my 12th Chemo (Oxal, Lecu, 5fu). Will be going for MRI and PET soon. Last CT scan (in Dec) was a bit mixed. Nothing new. Nothing grew. It basicaly said, no definitive evidence of any cancer. But pointed out a couple of suspicious things. One was in liver.

Chemo used to make me very sick. Specially dry mouth. No non-warm liquids. Some neuropathy in fingers and feet. But all manageable. I had hard time bringing my blood counts back up. Neolasta shot used to help a bit, but so much.

Scheduled for Flex Sigmoidoscopy pouch test on Apr 14.
Scdeduled for illeostomy reversal for May 10. (Not my rectum and more than a foot of colon was removed).

Things looking great for now. Will write more when MRI and PET results come in. I am high spirits.

Please post or point towards your experience with ileostomy reversal.

Thanks

Just to add. Its been more tan a yr now since I was first diagnosed. I never thought I will be alive after a year. But I found my self in high spirits now.

Glad to hear you are well. It is such an inspiration! I am going tomorrow for my pre-reversal meeting w/my surgeon. Any good tips are appreciated this way as well.

Good luck to you!
Cats

Glad to hear things are improving gradually. I remember when you first posted here as a newly diagnosed patient, mine was about 3 months prior to yours. I had my reversal on Dec 30, last chemo cycle (folfox) was on Oct 6. They did have me go through a CAT and PET (with CT) scan before my surgery to decide whether to remove the port or not and rule out any possible metastasis. I also had a barium enema (spelling) where they put liquid though my system and took whole bunch of x-rays to make sure there wasn't any leak anywhere, especially where the surgeon had cut off part of colon/rectum and reconnected. I did have an intermittent rise in CEA for some unknown reason that came back to normal before surgery.

Surgery was pretty smooth this time (my first surgery was quite painful and spent 24 days in the hospital due to complications). It really does feel good when the bag is gone! I was put on liquid diet immediately and was introduced to solid food (low fiber) in about a day or two once I was able to pass air. Wound care nurse came twice a day to change the dressing on Ping-Pong ball size opening where the bag was. The surgeon wanted at least one bowel movement before I was released, which happened around the 4th day and I was released the day after. I used the morphine pump first couple of days to control pain and was given Vicodin later. I almost didn’t feel any pain with Vicodin. Hospital arranged home-care visit by a nurse for the wound care. It usually takes a month for the wound to heal. I remained on low fat low fiber diet for about 4 weeks and gradually moved to high fiber food. Bowel movements have been quite frequent (12 times or more), but it is not like diarrhea. I am taking fiber power twice a day to help reduce the frequency. It is getting better by day. I go for colonoscopy in May (first one since my original diagnosis) and a CT scan after that. I found fasting a day (from dinner to dinner on organic vegetable juice, green food supplement and plenty of water during the day, you still take the cleansing fiber) every week helps a great deal to clean out the system and minimize the bowel movements. Hope this helps you to prepare for the upcoming reversal. I will post more if I remember anything worth mentioning. Wish you the best.

Thanks so much for your details. It helps to know what other go through. I really appreciate your response. I have my appointment tomorrow so it gives me an idea of what questions to ask the surgeon.

Wishing you continued health!
Cats

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rephyc15,

First, take one day at a time. Well it is said that done. Well time will teach you to do that. Some highlight points.

1. I was diagnosed with stage 4, with mets to liver.
2. Have been now almost a year of chemo, + 5 weeks of radiation. Chemo is not so bad as it sounds. The key is to take rest. MOST IMPORTANT. THERE IS LIFE AFTER CHEMO. I inspite of surgery, radiation, illeostomy, chemo, re-chemo, etc am doing fine. Now I am feeling great. Just like I use to before diagnosis. My last chemo was 3 weeks back. Now just waiting for the reports to show what is left.

Initially you and your brother will feel, that it is end of life (good life), but it is not. You will be able to live beter life again. The initial stage, i.e before the treatment start, is the worst period. Once treatment starts, it is smooth sailing.

So lighten up and go for a dinner out.
tahb

post deleted.

Goodluck for your bro for the 18th!!!

((Hugs))
Maz

post deleted.

post deleted.

46 year old stage iv, mets to the liver and abdomen here. Was told in May 05 that I may not last 2 months, still here. I started on Oxylaplatin (sp?) and Fol Fox for 8 months, it did wonders for me, then a spot in the liver grew a small bit, they changed me to Campostar/Avastin and Folfox.

I have seen a naturopath for acupuncture and herbs to offset effects of chemo. I have consulted all kinds of people regarding diet, herbs whatever. Anyhting that brings relief is good. If it means a doughnuts and cake washed down with coffee and cigs after eating, go for it. No one has shown me anything to suggest that a certain diet will improve chances of survival.

If you look into "alternative" treatments (many of us did,) beware! There are lots opportunists waiting to prey on people.

Hi rephyc15

I am also in UK. Husband diag 3 yrs ago with bowel cancer stage 4 mets to liver.
Great to hear that your brother has no lymphs involved but please do not under-estimate mets to liver. Husbands liver surgeon explained to us that if un-treated, mets can overwhelm the liver in a short space of time. So please ensure that you ask your consultant what treatment they will be giving him and when. In our part of UK (East Mids/Anglia) there is a great network between consultants in Leicester, Peterborough and Addenbrookes and hopefully in your area too, so please dont be shy about asking an oncologist about liver surgery or vice versa. Just make sure you ask lots of questions, get answers and double check appointments and times and who you should be seeing next. If is too easy to get lost in the NHS system if you are not carefull.

Good luck
ktee_uk

Thanks ktee :) Anyhow, hearing that your hubby is still doing well after 3 years is really heart warming and encouraging. It is indeed a rollercoaster ride...

Thanks again ktee.

Forgot one thing. I had a doc give me really good advice when I was first dx'd. He said statistics, especially in colorectal cancer, are years behind and treatments are always changing and chances of survival and/or better quality of lie are always getting better.

BTW, keep your peckers up has a slightly different meaning in the US than the land of Rooney....either one works for me :D

How do you know lesion in liver malignant ? Was any biopsy done ?

I tried to look on the net, but didn't find any cas which has mets to liver due to rectal cancer without bowel wall penetration and lymph nodes getting affected.

Doctors typically, do look at liver during colorectal resection. I had (rather still) have a 3 mm lesion in liver. But it is not a solid and tend towards liquid density via MRI and CT scan. But during surgery, surgeon took out a small .4 mm lesion which as per lab was malignant. But this spot was not even visible in MRI and CT.

So every thing is very subjective. Do not let the spots in liver worry you. Just keep an eye on those and get all possible test done to diagnose those.

post deleted.

post deleted.

I hope your brothers op goes well?
I have just been discharged from hopsital yesterday after having a colonoscopy after having several biopseys and a couple of polyps removed, he did say that was an induration in the rectal region of the bowel and waiting for pathology for results. Also i have a fatty liver, i certainly hope the two are not linked as i have a lot of lower right abdominal pain with pressure also the liver is enlarged, im waiting for a barium x-ray before seeing the gastroenerologist on 26th May so may have more anwsers then.

I know how you feel with getting information out of doctors and specialists, they can be a bit vauge at times! :rolleyes:

Andy

Hi rephyc15
Here in UK it is not normal to get copies of reports unless you go through the NHS maze and get a copy of his medical report or part of. However, you can ask specific questions of his medical team. You do need to be assertive so they don't dismiss or walk over you. Ask to talk to one of the medical team, preferably his surgeon and ask perhaps the following

1. Where was the primary tumor located and what was the extent of spread?
2. Were there clear margins?
3. If they know the liver is affected, which lobes of the liver and which segments.
4. Why do they think the lesions will be slow growing?
5. How and when are they going to treat the liver (chemo or surgery?)

I always found it best to write the questions down and take them in. If all else failed and i lost my nerve then i could just shove the questions under their noses and wait for a reply.

In my experience, i usually found that if you are armed with sensible and considered questions then the docs will take their time to explain things.

Also start asking about liver specialists. There are a few in UK, one of whome worked on my husband. He is Ashley Dennison based at Leicester General (not the Infirmary).

good luck
ktee

I hope your brothers op goes well?
I have just been discharged from hopsital yesterday after having a colonoscopy after having several biopseys and a couple of polyps removed, he did say that was an induration in the rectal region of the bowel and waiting for pathology for results. Also i have a fatty liver, i certainly hope the two are not linked as i have a lot of lower right abdominal pain with pressure also the liver is enlarged, im waiting for a barium x-ray before seeing the gastroenerologist on 26th May so may have more anwsers then.

I know how you feel with getting information out of doctors and specialists, they can be a bit vauge at times! :rolleyes:

Andy

Blimey, 3 brits on one post, this must be a record :bouncing:
Hope you results go well Andy.

Andy:
Are your Liver Function Tests (LFTs) abnormal? MANY people have a "fatty liver." And that tends to enlargen it. All it is is fatty deposits that accumulate in the liver. I can't tell you how many livers I have seen... they are ALL different. Some fatty, some floppier than others, some larger. It depends on diet, your body size, etc.

I would only start worrying if your LFTs were abnormal. Also, the induration in your rectum could be an adhesion pulling on the outside of your rectum in your pelvis. Have you ever had surgery before or been dx with endometriosis? If so, you easily could have a sticky patch or adhesions pulling on your colon or rectum causing a dimple or induration. If not, we still can naturally have adhesions in our insides that may cause a slight pull and a dimple forms on the bowel wall.

I hope that helps and I wish you luck with your pathology reports.

Regards,
CancerDad

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rephyc15:

Although I am not a Brit, I hope you don't mind me chiming in! :)
I do hope you are not discouraging your brother from taking pain killers if needed... this surgery is very painful, especially if done open with a mid-line incision and stomal pain. I speak from experience. Although everyone's pain levels are different, I have yet to meet someone who has had this surgery and not had pain afterwards that requires a narcotic. Morphine is a natural drug and this is the first I have heard of it not being good for the immune system. All narcotics do slow down bowel function and can lead to constipation... even with a stoma, which can be combated by taking an innocuous stool softener such as docusate. I am pretty familiar with Eastern Medicine and do embrace it. I also am not an advocate for taking medication unnecessarily. I'm wondering if you would mind sharing where you obtained that information.

Thanks,
CancerDad

post deleted.

Hi Ktee uk,

Hi, yes three brits! must be some record! :bouncing:

I dont know what to expect from the pathology results but all the information i have read points towards cancer, is quite a scary prospect awaiting diagnosis and the medical profession in the uk dont seem as open with information as the us!
Im having a barium meal examiniation soon so hope that will lead towards a diagnosis and start trteatment very soon as its the waiting and not knowing thats the biggest worry. :rolleyes:

I really hope everything goes well for you in evrey way, stay positive!

Andy

Cancerdad, Thanks for the reply, as per your question my ALT`S are abnormal according to my gastroenerologist, he has scheduled a barium meal x-ray as soon as he can get me in.
Thanks for listening and advice!
Andy

Not sure If I posted my PET results. "No definitive evidence of metastatic disease". Yipee. Hope this provides courage to others on the board. Now looking forward though a bit nervously for ileostomy reversal next week.

post deleted.

rephyc15,

For my case - a CAT scan showed 2 mets on my liver, and 1 on my lung. A follow-up PET scan ruled them out as cancerous. So things are not always as they seem.

Just thought i'd share.

post deleted.

Update on my illeo Reversal.
---------------------------

Wed: Checked in Hospi on May 10 (Wed)

Thu: Surgery went fine.

Fri: Started with walk, cofee/tea on Thurs.

Sun: No gas till Sun. My belly is as big pregnancy. Not much pain, but felt like it will explode if any body even touches it. Drs did obstructive series x-ray. Found the bowels a distended more than they would like to see.

Mon: CT scan showed that there is liquid outside bowels and also around liver. Drs started to worry that there may be leakage may have to reoperate me to fix it. Started vomiting a nasty green stuff. No o/p from down below yet. I was on hourly report to doctors. A NG tube inserted, which took out lots and lots og that green nasty liquid. Started horrible diarrhea of the same green stuff. once every half hour. Whole night.

Tue: Drs now really worried. I was energy less. Not much pain though. A CT scan was done with a needle inserted to take sample of liquid. But that liquid was clear red. So that was not a leakage. Now belly has reduced. NG also sucked out alot. By evening belly was in very good condition. NG tube was taken out. NG tube was very unconfortable. Diarrhea stopped by mid night.

Wed: Early morning passed gas. DRs were so releaved. High fives were flying all over. Had liquid diet in lunch. Soft diet in dinner. Evening diarhea again started. stopped around midnight.

Thurs: Had breakfast and came home.

Fri: No o/p from bowels since Wed night. Had a very hard (constipated) potty in evening.

Sat: (Today) eating soft diet. Tummy is slightly ditended. drinking lot of fluids. No potty yet. I am constipated, but hopeful that it will vome out some time today or tomorrow as I am passing gas and I can feel my intesting working.

post deleted.

Tahb,

How are you feeling now? Hope things are moving OK for you. Sounds like you had an ileus before. I had that after my first surgery...feels HORRIBLE! I hope that you are doing well today.

Good luck!
Cats

Another 5 - 6 days have passed by.

No more constipation. Passing stool 7 - 8 times in the morning and 7 - 8 times in the evening. Day and night are OK. Stool is well formed (paste like). It neither hard nor liquid. But is very thin in diameter as if it is passing through a very small hole.

Now new problem. When I pass stool, it passes in very small quantites and move very slowly. While it is moving out, it gives horrible-horrible burning sensation. As if somebody is rubbing salt on open wounds. I am apllying vaseline. But it is not helping. Now my butt is very sore as well. I am having very bland food.

Any ideas what to do and when will it be over ?

Tomorrow it will be 3 weeks since reversal.

1. Still eating half diet. Supplementing it with mutivitamins and Boost (energy drink).

2. Surgeon suggested me take metamucil.

3. having 5 - 6 BM in morning and 5 - 6 in evening.

4. Uning A+D (Diaper rash) cream instead of vaseline.

5. Burning while BM is still there. But now the burning lasts only during the BM and goes away after that.

6. Whenever I take a walk or stand for 5 - 10 minutes, I have to use restroom (BM). That has chained me virtaully to my home. I haven't ventures more than 100 meters from home except for surgeons visit.

7. Using "Depend"s. I do soil those occassionaly on the way to bathroom. That is very frustrating.

Over all things seems to be improving, but very slowly.

Any suggestions, ideas, etc are most welcome.

Hi tahb, sounds like things are definitely improving but it will take time to regain bowel control. Try not to get frustated. The bowel has to retrain itself. You are doing well!

Metamucil and A+D cream is helping. Butt burn has reduced alot. But I am experience a king of contipation (mild though). Number of BMs have reduced to 3 - 4 in morning and 3 - 4 in evening. But is still sore though from these BMs. When-ever I walk or stand for 10 - 15 minutes, it triggers 2 - 3 BMs. No BMs now after I lay down in night for sleep.

Tahb, Im 3 weeks past my last reversal, and myn seems to be going alot better than yours is. I have maybe 1-2 bm in a morning and maybe a bowel movement of a night. No pain, and nice formed stool. Neither diahorrea or constipated. I am on a full diet, and eat pretty much what I want.
I did have the reversal done twice tho, the first not successful and had a blockage which meant a second try in side with in 2 weeks. I also have a small infection in the wound itself but that is clearing up too with antibiotics.
I am still on painkillers.. (which I will try and reduce soon) but when the bm was soft I would take a Panadene forte (to bind me together a bit) and other times I was on Tramadol.
I hope you will return to some sort of normalacy soon!!!
Take care
Maz

Thanks Mazrose. That is very encouraging. I read your story of major comlplications on other thread. You are very strong and with fighting spirits. That gives me strength as well.

I hope you will be able to wean yourself from those painkillers and all other medicines. Specially I am not a big fan of medicines, neither is my surgeon.

I realized that my problem is the gas. When ever there is a small amount of gas, it pushes the whatever small solid material in front of it to the edge and then I have to go. But when I am lying down, then the gas is able to pass out without me needing to empty bowels. I guess with time, the colon will become more flexible and will allow to pass the gas without the need of emptying the bowels and that will decreas the number of BMs.

Metamucil is helping in forming up the BMs. I skipped a day and the next day I had bad day with BMs. Butt burn returned and lots of BMs. So no more skipping of metamucil for me any more.

If you have any tips of tricks up your sleeve then do post here. As for me, A+D cream, Depends, Metamucil, walk is helping me alot.

tahb, funny you mention gas... I sometimes am not sure if its gas I need to pass or a bm... so I sometimes go to the toilet expecting a bm and its only gas. Your right though, Im thinking the bowel just needs time to work it all out again.
I am now only one one painkiller a day (a 12 hr slow relase) and not taking it at night.. I wake in some pain, but am coping with that. I dont relly like to take the painkiller eitehr but I hate pain too if its not necessary.
Yesterday the steristrips (paper like stitches) came off my wound but I still have an infection so am still bandaged pretty much. The nurse told me again to not lift anything as the stitches can still pull apart. How is your wound itself?
I am so looking forward to starting a "normal" life again after these 18 months of hospitals, surgeries and doctors.
Anyway the best of luck to you. Take care
Maz

Maz,

<<<< How is your wound itself? >>>
It has almost healed totally. No infection (cross finger). Today even the last piece ot clot which formed over it came off.


<<<<I am so looking forward to starting a "normal" life again after these 18 months of hospitals, surgeries and doctors. >>>
Same here.

I am happy and feeling good now that I am through with chemo, radiation, surgeries, ileostomy, ilestomay reversal etc. But being stage 4, I am a little bit nervous, thinking what will happen if it comes back. All I am asking is 10 yrs from god so that my kids corss 15 yrs of age and are able to take care of themselves and my wife also has support through them while I am gone. Sorry just got a bit emotional.

tahb:
It's ok to get emotional. Believe me, I DO TOO. We say when will our lives have some sense of Normalcy again? So I laugh when you guys talk about a "normal" life after cancer. With all these complications I have I constantly worry and wonder...Can you really have a normal life like before again? I almost think the definition of "normal" almost resets itself. Am I the only one that feels this way?

Warm Regards,
CancerDad

cd and Tahb.. Speically CD I guess. You guys were diagnosed with alot higher stage than I was, and so yeah I really am (fingers corssed) a NORMAL kind of life. Do u think its wrong of me to expect a Normal life now? Im trying to be positive I guess, but am not thinking about the cancer returning. I was given the clear on the CEA levels and have no reason to believe it should come back. I also started a ne job (well promotion within the place I already worked part time) and so am thinking this is my second chance.. a new beginning.
I am so sorry for you CD with all you have been through and sincerely hope that one day soon, it might all fix up and you will have some sort of "normalcy" to your life...
Like I said, I was only a stage 2+.
Best wishes and hugs to you both.
Maz

Maz,

Like everybody says, "NORMAL" is subjective. Everybody definition of "Normal" is different. I consider my life now way better than "Normal". I see many people (with disabilities) who will consider my kind of life a heaven.

Now, will our life will be same as earlier. The answer is "No". Even in non cancer people, answer is "No". Think it this way, can an old man's life be like a teenager again ?

So go ahead start a life a new. Your life is normal and better than many, worse than many, but that's the way life is.

On my front, yester day CEA count was still low i.e 0.4 Dr has asked me to get the port removed, which I will this Thurs.

One Qs though, he says I need to get the CT scans every 6 month. I thought, it should be every 3 months. Do you have any opinion on this ?

Thanks
Tahb

Maz,

Like everybody says, "NORMAL" is subjective. Everybody definition of "Normal" is different. I consider my life now way better than "Normal". I see many people (with disabilities) who will consider my kind of life a heaven.

Now, will our life will be same as earlier. The answer is "No". Even in non cancer people, answer is "No". Think it this way, can an old man's life be like a teenager again ?

So go ahead start a life a new. Your life is normal and better than many, worse than many, but that's the way life is.

On my front, yester day CEA count was still low i.e 0.4 Dr has asked me to get the port removed, which I will this Thurs.

One Qs though, he says I need to get the CT scans every 6 month. I thought, it should be every 3 months. Do you have any opinion on this ?

Thanks
Tahb

Tahb:
I'm the one who originally posed the question about what is normal, and can you really have a "normal" life again after cancer. You state "Now, will our life will be same as earlier. The answer is "No". Even in non cancer people, answer is "No". Think it this way, can an old man's life be like a teenager again ?" I think we need to keep in mind that OF COURSE lives change. Change is what life is all about. But your analogy to an old man returning to his life as a teenager is a little off in my opinion. In my instance... at 33, I am facing after effects of advanced rectal cancer. We are talking about a life that is starting anew almost overnight. I have to catheterize 6 plus times a day, I can't have sexual relations with my wife as I am not responding to ANY therapy... short of having an implant painfully implanted.

So, for me, my life has ended as I once knew it. Yes, I am happy to be alive. However, it is still extremely depressing. No, I don't know what to do about it... besides take it day by day, and try to figure things out. Try to imagine the implications if it were you... It changes A LOT of things in your life, so much more than you initially realize. And no, I didn't have nearly the time to acclimate to my situation and fate as an elderly man would have had the time to change and adjust physically and emotionally as he aged.

Regards,
CancerDad :angel:

PS You will receive CEA's every 3 months and your CT scans will go from 6 months to yearly for the first 3 years post treatment.

Good Luck on your Port Removal! :jester:

CancerDad,

You always have been a source of inspiration to me. I agree fully with your viewpoint on being "normal" and more so when looking at your case. I really pray many time for you and hope you will feel much better soon.

tahb.

Update on ileo closure.

Metamucil is helping. No more butt burns. BM now 1 - 2 in morning 3 - 4 in evening. If I forget to take metmucil, but burn returns and BM spikes to 15 - 20.

incision is fully healed. I have started work full time. Moving on to life (with whatever limits these surgeries and cancer have imposed).

tahb.

Tahb:
Thanks for the kind words. :) Have you tried using a product to reduce stomach acid, like a "PPI" or Proton Pump Inhibitor such as Aciphex or Prilosec, etc.? This might help a little. Also, I would DEFINITELY be using Lomotil daily and Immodium as well if needed to slow the frequency of stools. I hope this helps and pray for you as well.

Take Care and Good Luck,
CancerDad :angel:

Went for appt with surgeon. Since 2 months have passed since the closure. He removed all diet restriction. Now I can eat pretty much anything except for nuts & popcorn. Even nuts and popcorn are OK if chewed well. I am off the hook on any excercise restrictions as well.

I now usually have 1 BM in morning and 3 - 5 BMs in late evening (after dinner). I am pretty happy with this improvement. Now I can go to far away places where there is no easy access to bathrooms. I can even hold the urge to go to for a BM for atleast an hour.

But when I forget to take metamucil, I get 10 - 15 BMs next day. Even in this case I am able to hold for atleast 30 minutes if required.

So now I am not tied to restroom any more. Yipeeeeee.

Went for appt with surgeon. Since 2 months have passed since the closure. He removed all diet restriction. Now I can eat pretty much anything except for nuts & popcorn. Even nuts and popcorn are OK if chewed well. I am off the hook on any excercise restrictions as well.

I now usually have 1 BM in morning and 3 - 5 BMs in late evening (after dinner). I am pretty happy with this improvement. Now I can go to far away places where there is no easy access to bathrooms. I can even hold the urge to go to for a BM for atleast an hour.

But when I forget to take metamucil, I get 10 - 15 BMs next day. Even in this case I am able to hold for atleast 30 minutes if required.

So now I am not tied to restroom any more. Yipeeeeee.

Tahb:

Congratulations!! I am VERY happy that all worked out so well for you! As time goes by, your BM schedule will probably even get better. It's PHENOMENAL that you have such control. ;)

I will continue to keep you in my wishes for continued recovery. :)

Warm Regards,
CancerDad :angel:

CancerDad,

Thanks for listening.

My surgeon was also amazed at my progress. He aid, that I have done much better than average. But he warned me very frankly to not to expect any more improvement. He mentioned that the rectum has unlimited (well sort of unlimited) capacity to expand like balloon and hence can hold lot of stuff there. Now since my rectum has been totally removed along with 1/3 of the large intestine, hence any more reduction is number of BMs is not even theoretically possible.

He said, for me the key will be to maintain the my BMs well formed and also not to get constipated. He mentioned that most of the people in such cases flip flop between diarrhea and constipation and my goal should be to avoid that and maintain the BM consistency. The best way to do that is use lot of natural fibers and hence metamucil or any such product can help.

He also mentioned, I may have to take the fiber supplement for life. Which he said lot of people already do.

Thanks
tahb

tahb,

Thanks for posting your story. I am headed for reversal on Thursday so the tips help. I have been so worried about what life will be like w/the reversal, so I am glad to see that things are going OK for you now. Sounds like the bms are manageable. Yeah for you!! That must feel great!


Wishing you continued good health!
Cats

Thanks for the good wishes.

Wishing you the best.

Also a side note, keep those pads handy, better still ask for diaper atleast for first day. That may come handy.

The nurses were very reluctant to put diaper on me, thinking that I may not like it. But I was able to convince them.

Good luck with surgery. Post back as soon as you come back.

Just updating. I am doing good. Having Metamucil daily. If I forget, I get a good spanking (10 - 15 BMs) next day. Otherwise life is very good. Working full time. Gaining weight (15 lbs) after last surgery. Blood counds are slowly creeping up to normal levels. CEA is creeping up by 0.1 every blood test. It is at 0.7 (used to be 0.2 for me). But since it is still very low, neither me nor my onco bothered about it. Will be having CT Scan in Dec.

Hope every one is doing well or keeping up the fight.

Tahb, we love updates. It all sounds like it is going well. Your CEA is still very, very low, I can see why the oncologist is not worried. Let us know how the December scan goes.

Jeni

I am visiting this board after a long time. So I thought I will update my situation. It should provide hope to others fighting the big C here.

My story in short: Rectal-Stage-4 Mets to liver, chemo+radiation, illeostomy+liver-resection, liver resection was confirmed malignant consistent with rectal primary, more chemo, illeo-reversal. Now heavy doses of metamucil keeps bowel movements down to 3 - 4 / day. Forgetting it to take night before is pain in .... resulting 15-20 burning BMs next day, but I dont forget to take metamucil now.

I have umblical hernia because of sugeries. I do not care much about hernia (do not want any more surgery). There is a lesion in liver, but it has been stable. So as per CT scan: no more "definitive evidence of metastatic disease". Life is good, just had a torturing weekend on crazy roller coaters at six flags.

I pary for win for everbody fighting the big C. Please keep up the sprit, the life is worth living once it is over.