Hello, friends, as you know, I am done with my chemo/radiation phase and surgery to remove my rectal cancer is forthcoming.

Getting crazier about the surgery. I have set up a meeting with the surgeon and am working on that 2nd opinion, too.

I have gone from imagining a chimp operating on me with pruning shears to things like having dreaming they misplace internal organs during surgery.

I put this question on another post, but because I am so antsy, will restate it here so it is not missed. I actually think I already know the answer, I just need someone to reassure me.

My surgery is set for Nov 13, exactly 6 weeks after my last radiation zap. That is not too long out, correct ? I have read many times that 4 - 6 weeks is the standard time for scheduling surgery post-chemo/radiation. And yet I neurotically worry. I ridiculously imagine that 5 weeks is ideal and one week makes all the difference in the world, yet of course that is crazy.

If anyone out there can reassure me, I'd love it, and hope you all have a great weekend.

Jeni

Jeni:
The LONGER out actually, the better. The chemo and radiation CONTINUE to kill cells for LONG after you stop receiving therapy. The longer you wait, the better for the surgeon if the tumor is lower, and the better for you to be able to heal after surgery.

It IS PERFECTLY NORMAL to be dreaming about them messing up. It's stress. Are you on anything medication-wise to help you out? Usually I advise people to get some Klonopin or Xanax XR to help out... also a sleep aid to keep you getting good rest. This is your mind's way of trying to grasp what is going to happen to you-- to your body. It is VERY DIFFICULT to hand your body over to someone to operate on.
TRY to enjoy your time before hand, take walks, do things you enjoy. If you feel up to it, work out a bit to get your body better ready to handle the surgery. If you are MORE proactive, then you will feel like you have more control over things... which YOU DO, to an extent. I KNOW it's a tough decision you are making about removal of other organs. Do some research, get those opinions... try to feel like YOU are the one in control of the situation, of your body. Remember when you are interviewing these surgeons that they are part of the team... YOUR team. I found that by calling people by their first names, I was able to assert the fact that they are a part of my TEAM (once I had chosen them), and that I participated in decisions and my care as well.

I hope this helps Jeni... feel free to post as much as you need as you approach your surgery date. :)

Fondly,
CancerDad:angel:

Jeni,

First you're NOT going crazy. You're fears are very RATIONAL !!!. Prior to my surgery, I woke up in cold sweats dreaming about my surgery.

I believe my surgery was scheduled 6 wks plus a day or two following radiation. They would scheduled 6 wks following radiation. That 4 week number is new. I will admit the two weeks prior to surgery, I was actually feeling good. I could leave the house and not be tied to the bathroom, thus I was getting TONS done before my surgery (my kids were starting first day back to school on same day as my surgery). About 2 weeks prior to surgery, I had to get alot of pre lab work done, and the hospital gave me a tour, explained what would be happening, so I knew what to expect. I found this to be very helpful and I suspect, eased some my fears.

Are you scheduled to see an Ostomy Nurse prior to surgery? Again this helped reassure me.

Guess I was also mentally preparing myself (I believe those dreams we experience are part of the process). So those last two weeks, I reached a point, knew I was having surgery (was LOOKING FORWARD to getting the cancer OUT of my body). And was starting to look beyond the surgery. Making plans, etc.

You will make it. Be gentle on yourself. While I did not want the surgery, I knew I HAD to HAVE the surgery.

We will be here to help.

Lee

Jeni,

If you are crazy - then we are all right there with you! Cancer and impending treatments and surgeries cause such stress - and we all exhibit our stress in different ways - chimps w/pruning shears just seem to be your way! :) I used Ambien to help me sleep during that time. Even some over the counter PM stuff might help. If the anxiety worsens, ask to get some of the meds CD mentioned - or take ativan at night.

I think 6 weeks is what I had as well. Part of me wanted to just get it over and done with, and part of me really enjoyed my 6 weeks off!

What I did in the interim was to read, read, read and make a list of questions to bring to the surgeon... I will try to find my list and pass it on to you. Meanwhile, try to laugh, walk, enjoy some good food and wine, go on a date w/ you s.o., rent some good re-runs, etc.

You know how people write on their body parts if they are having leg surgery or whatever...this leg, not this one??? Well, hubby and I got giddy and laughing in the waiting room and thought we should have made t-shirts...mine would say "this a-hole" his would say, "not this one." We always find laughter - even if we were the only ones to think it was funny - helped. At reversal surgery I thought I was HILARIOUS when I told my surgeon in my pre-valium giddiness - "Oh, yea know...same *****, different way." When you are dealing w/rectums, poop, gas, etc...you have to laugh!

Anyway - the nerves are normal - I would be worried if you weren't! Go back and read some of my posts from Oct/Nov 2005 - I'm certain I was a wreck!

We are here for you!
Take care and try to get some rest...
Cats

Jeni,

Here is the list I had - I put my experience in ()

List of Questions for Surgery

1. Anesthesia: general or epidural? (general)
2. Scalpomine Patch for post op dizziness/vomiting? (YES - worked for me very well - I don't do surgery without it! Ask your anesthesiologist)
3. Where will stoma be placed? (This was done by the ET nurse the week before the surgery...she worked w/me to mark the spot. She scratched a little X and then I would write on it w/a surgical pen every day, so the spot was very clear to the surgeon. She made sure I could see it well, and that it was just right)
4. Why no PET scan or MRI? (Didn't need one, according to them because my CT scans were clear - still wish I had one, though)
5. What options are there for pre-op prep? (prep was hard - I drank the phospho- soda w/ lots of water...the worst part was swallowing the antibiotics. I threw up all night and even in the pre-op room. See if they can give you something for nausea)
6. How long will the catheter remain? (mine was in about 3-4 days)
7. Is this laparoscopic? Is there research that says increase in recurrence w/laparoscopic surgery? (p. 95) (mine was done laproscopically AND by going through my c-section scar.)
8. Is this surgery called TME? (p. 98) (YES that is what I had)
9. Ostomy care? Supplies? What do I need in advance? (Get nothing in advance...your ET nurse will guide you through this. You will get a catalog and the supplies are sent straight to your house. Your nurse will send you home w/enough stuff to get you started. You really won't know what you need until they see the size and shape of your stoma.)
10. Monitoring for recurrence (schedule for colonoscopy, CT scans, CEA levels) (I have CEA levels every three months, and rectal exams every 3 months - colonoscopies and CTs are yearly).
11. What is the incidence rate for recurrence? (can't remember this one)
12. NG tube? (I've had four abdominal surgeries, obstructions, ileus, etc and never had one)
13. Should we do a pre op blood donation? (I did not and could not - I had just had a blood transfusion during chemoradiation!)
14. Is this considered an “aggressive tumor?” (yes - mine was "poorly differentiated andenocarcinoma - but we really didn't know that until we got the pathology report. Also knowing that I had a clean colonoscopy 5 years prior led us to believe that it grew relatively fast)
15. Hysterectomy – Should I be on hormones? (YES -when my body went into instant menopause I had MAJOR problems - hot flashes were horrible, but the crying, crying and depression were literally life threatening. Thank GOD my friend made me call my gyn and get on estrogen...it saved me!)
16. Post op – Should I be on aspirin, folic acid, and /or calcium supplements? (Still don't know this one...I plan to ask at my post op in a couple of weeks)
17. When will we do reversal, assuming I have post op chemo for four months? (My surgery was Nov 17 and my reversal was July 20 - I would NOT get the reversal until you are FINISHED w/chemo plus given yourself a few weeks to get your counts up, etc. You do not want to be potty training on chemo! Trust me on that one!)


Hope my list helps you some...I'm sure there are lots of other things to consider.........

FYI - my surgery took 8 hours...I was hospitalized for 21 days postoperatively, but that is NOT the norm - I had an ileus in addition to a "bonus" surgery to remove adhesions...Went home on TPN and was able to eat a little over a month post surgery - but again that is not the norm. I think most people get home in about a week.

Thanks, guys, for responding, the reassurance is good. I am going to reread
CD's note that the chemo/rad keeps killing stuff after it has been ceased.

I am actually sleeping fine, I just dream wierd dreams. I do have an anti-anxiety drug but have only used it once. When I have my kids around, I am not chasing my tail so much. Its times like when they are at school that I am nuts.

I do think the wierd dreams -- oops, where's my bladder ? - may be part of the processing of this fear.

I am going to donate blood, that is already on the docket - 2 units. And the surgery to going to remove the anus and rectum, like Lee had - I am sure it is going to me that TME procedure, but I am going to check again anyway, due to anxiety. The procedure is associated with fewer complications and reduced recurrence.

Main reason for 2nd opinion is removal of addtl organs/tissues even if they do not seem to have been affected, such as the ovaries.

And I have an appt with Arthur the Stoma guy for stoma placement ( just how does anyone land in that as a career - Stoma Guy ????)

I am not done with my freaking out, folks. Thanks for listening and most of all for answering, thank God CD is back and your patience and support means so much.

jeni

It is a scary time. Other things to think about in hopes of easing the fear...

As mentioned by another poster, pre-op CT or PET scan? I had surgery at the end of March, had had a CT in November so the docs said no need to repeat. I wish they had. If they had, we would have seen that I already had mets to the liver and I wouldn't have bothered to have my ovaries removed (doc wouldn't remove uterus because of large scope of operation and radiation damage). So I went into hard menopause for no reason. Please insist on a pre-op CT scan unless you've had one very recently. I think it makes a huge difference in your ability to make decisions.

Wear your favorite jeans to meet with the stoma guy - then you'll know where best to place it. Mine ended up quite high on my abdomen because I am a very tiny person. It has worked fine and I'm grateful not to have to be wearing the high waisted jeans that so many female ostomates complain about.

Discuss pain management. I happen to be very opiod tolerant, so had a tough time in recovery. They ended up doing an epidural. Luckily, my best friend is a nurse and she warned me this might happen. It worked well, but would have been very scary if I'd not been warned.

I was released from the hospital eight days after surgery.

Good luck!

Yes, I should address the scans, that was brought up in one of the posts -- I had a ct scan in mid August and a PETscan in late August.

Both of those scans showed no spread of the disease, no lymph nodes involved -- but of course only surgery is fully reliable on lymph nodes. And surgery finally defines everything.

I don't know if I am going to have another scan prior to surgery, but I will ask - what about the rest of the rectal cancer folks ? Did you have scans post-chemo/radiation but pre-surgery ?

I have been told that they will be using an epidural for post surgical pain.

By the way, I am continuing to exercise a lot. I think I may have mentioned this before, but two very large observational studies - one looked at 800 colorectal cancer survivors, the other looked at about 600 female nurses who had survived colorectal cancer -- reported as much as a 50% reduction in recurrence when survivors exercised what they called 18 metabolic equivalent type hours.

One of these studies looked at stage 1 - 3 survivors, the other stage 2 and 3.
It didn't make a difference if there was nodal involvement or whether or not the person had chemo, the results for those who exercised at and above a certain amount was constant.

What that figure, 18 MET means, is if you walk an hour at 2 - 2.9 mph, that has a value of 3. An hour of aerobic exercise has a value of 6, an hour of running if you can do a 10 minute mile has a value of 12. In the study, the folks that enjoyed this reduced rate of recurrence had to have at least 18 of these "points," if you will. The studies were reported in Oncology magazine in August.

So I used to maybe exercise 1 - 1.5 hours a week and now I exercise about 5.5 - 6 hours. I am guessing that is why I did not have any fatigue during the chemo/radiation and it maybe why, despite heavy worry, I am able to sleep pretty well at night.

Thanks, all - I will have more to come, believe me -

Jeni

Cats,

What stage are you? I was stage 3. I see my oncologist every 3 mths, but have c-scans done every 6 mths. Did I read correctly, you're are yearly. That is great if they are.

I was in the hospital 4-5 days. I had my surgery early Monday morning. My surgeon was scheduled to release me Saturday morning, but I got out late Friday evening. I hate hospitals and was walking around the parking lot by Friday evening. I think they were concerned I would just walk home. I warned my surgeon I would do everything she asked if in return she would release me at the earlist point. They made sure I pasted a bowel movement before releasing me. Walk, walk, walk, is very important following surgery.

Lee

Jeni,

I am passing this along as FYI. About 3 weeks after my surgery, my tail bone hurt (ache). It felt like my tail bone had been broken. When I mentioned this to my surgeon in a post op visit, she said this can happen ( I don't remember it being mentioned prior to my surgery). Anyway, I had an ache for several months, it did completely go away, but there was a point, when I could not sit for longer than 1/2 hr. Spent most of my time laying on my stomach. I've never heard other people mention this problem, so I'm not sure why it happened to me.
Again, I'm passing this along as FYI.

Lee

Jeni,

I had some testing done prior to surgery, can't remember which now, had chemo, then I started a maintance program. Had scans one month after finishing chemo. I had Cea level before surgery, after surgery and once during chemo (that one doubled as a result of chemo). If I remember correctly I believe they waited about 3 mths after chemo before doing another CEA and yes it dropped.

Lee

Jeni,

Will youre surgery be "open" or can they do it with laparoscopy?

If it's open, make sure to mention to your surgeon to be careful where they put the self-retractors. My surgeon had it placed too tight on my right femoral nerve and basically cut the blood flow off to it and it died. So now I have no feeling, reflex or much strength in my upper right leg. Has definitely made recovery and chemo much more difficult!

I guess this doesn't happen often, but it CAN happen!

Hugs!
Carol B

Hi Jeni, I remember that Larry had a CT scan done both before and after radiation. We knew going into surgery that the tumor was significantly smaller than prior to radiation. Larry's tumor was located high in the rectum, close to the sigmoid colon. Because of the fact that he is a man, we were told that the probability of removing the tumor and reconnecting the colon to the anus would be slim to none.:eek: The combination of very precise radiation and a very skilled colorectal surgeon, made it happen:blob_fire
Prior to his reversal surgery last July, he had a PET scan. We wanted to make sure the chemotherapy took care of anything that still might be lurking before having the surgery done.
Thank you for the info on the exercise study. My honey is a die hard couch potato.:rolleyes: I read him your post to try to motivate him to exercise more. He has been taking care of me these last 3 weeks as I recuperate from back surgery. He has been wonderful at taking over the house work, but is using it as an excuse not to go to our fitness center. I have managed to get him to join me on a few walks.
Best of luck with your upcoming surgery and treatment. It is a long hard road to be travelled but you appear to be up for the challenges to come. Hugs and Prayers:angel: Kathy

Everyone, so many thanks for replying --

Carol B, what is a "self-retractor?" Let me say right now I don't even like the sound of that. Sounds positively Victorian, like something cruel rigged up to guarantee the chastity of maidens.

Kathy, rest well from your back surgery. Yes, we must exercise ! If not for the benefits of that study, then to keep us well for what we face - think how hard it would be to fight this well if you had diabetes, for example ? And everytime I pick up a newspaper it seems like the whole country is headed for type 2 diabetes. People do fight it successfully with other conditions, but it seems to me it just makes it harder.

Lee - many hugs of gratitude to you, you are always giving me detail and time - do I understand that between chemo/radiation and the surgery you also had another shot of chemo, or am I reading that wrong ?

I am not able to have laproscopy -- tumor is t3 and low in the rectum -- its the happy bag for me !

More questions to come - thanks in advance, I love you guys and would be lost without you.

The dreams last night: everyone in the hospital was pants-less. Not an erotic moment, a very silly one. I kept wondering why no one else was alarmed by this. Even visitors, coming in with tops but no pants. A metaphor of some kind ????

jeni

The self retractors are what hold you open so the doctor's can see everything and keep their hands free. It was explained to me that they literally "bolt you to the table" with them! More information than I wanted to know!

Carol B

Jeni and Carol:
NO, they DON'T BOLT you to the table. You are however strapped in place for your safety, so when they turn you head down, you don't end up on the floor!! The retractors just hold the incision open. They are connected to the table in some instances, in others, they just hold open your skin sliding side to side so that the surgeons can get their hands and instruments in you to do what they need to do. Trust me, I've been in on MANY cases and can assure you WITHOUT A DOUBT that you are NOT bolted, and it is NOT barbaric.

Jeni-- at least your dreams are becomming more about YOU being in control... others with their pants off is a sign of vulnerablility. KEEP UP THE GOOD WORK! Remember YOU are a member of the team, and it is YOUR BODY.

Hang In there.
Fondly,
CancerDad

PS Carol, usually when they use retractors, they wet 4x4 gauze pads first and put them under the retractors as to not damage the tissue. SOMETIMES, if a surgeon doesn't see the nerve, or is careless, what happened to you can occur. I'm sorry for the damage. During my surgery, I was positioned in such a way that my whole arm was black and blue when I woke up, and all tingly. That's the work of a careless OR nurse who is supposed to make sure you are positioned right during that steep angle. Luckily yours is much more rare, seeing that it can cause permanent damage and all. Mispositioning is more common, though is simply an inconvenience most times. I wish you luck... You know that I am familiar with nerve and traumatic/cancer pain! Not fun at all! I wish you the best. ~CD

I beg your patience, everyone, while I ask another question that some responses have brought to light --

1. How many of you had scans right before surgery, such as after chemo/rad for the rectal folks but before the actual surgery ? What scans were they, MRI, CT, PET, ultrasound ?

2. How many of you had scans after surgery, how soon after, and again, what type did you get ?

Am calling Fred Hutchinson Cancer Center for 2nd opinion on Monday. All of your responses and replies have meant a great deal to me, they have helped form my questions and direct me. Love to you all --

jeni

Jeni:
You don't need to beg our patience... we're here to help! :) As you know, I am a rectal cancer Survivor. I know after the chemo/rad regimen, I had a CT scan-- no more ultrasounds. I don't recall having another PET until later down the road. I also got clearance from my oncologist and surgeon to do autologous blood donation. I donated two units. And in the Post Anesthesia Care Unit (PACU), I woke up to receiving a unit, and subsequently required the second unit, that I had previously donated, that they started in the PACU and finished on the floor since it takes a couple hours to get a transfusion.

You WON'T get any scan immediately after surgery in all liklihood. You will get another CT and PET as time goes on, and depending on what they find in surgery, and when your chemo starts. It's usually the call of your oncologist for follow-up testing.

Fondly,
CancerDad:angel: