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Old 07-27-2006, 10:58 AM   #1
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Husband 37yrs, just diagnosed, many questions?

My husband was just diagnosed this week with rectal cancer, he's 37 yrs old. We had a colonoscopy on Mon., finally. We have been trying to get one for the past two months, but the primary care physician told him there was NO WAY he could have colon/rectal cancer he was too young. His bloodwork kept coming back ok, so they would not get him in any sooner to the specialist for the colonoscopy. They found a large tumor the size of a quarter near the end of his rectum, they biopsied it and on this past Tuesday, 1 day later we got the news that it was adrenocarcinoma, rectal cancer. The doctors seemed to be amazed that he had this, as they said it was/is extremely rare for someone his age to of gotten this. They immediately had us go for more bloodwork, and have ordered tests. This morning we went and had a CT scan of his pelvis and abdomin, and tommorrow we go for a rectal ultrasound to find out what stage it is in.

I am so scared. We have our own business and he is the backbone of the company, also we have 3 small children, 3yrs., 4yrs., 10yrs., ......I am so worried I can't sleep at night with the thought of us being left here on Earth without him. I'm so worried that this has spread because he has had symptoms for a while now. He is tired alot, and has lost 20lbs. so far. They also found a parasite, which they said is the cause for the weight loss. I am wondering if it had progressed, wouldn't it be showing up on his bloodwork?

We are willing to travel anywhere in the USA for the best doctors in this area. So far becuase we don't know the stage of it, they said that they would begin radiation and chemo first, and then remove the tumor. We are waiting for the oncologist to call us today.

Any info, support, advice would be sooo appreciated!

Tonya

 
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Old 07-27-2006, 03:16 PM   #2
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tahb HB User
Re: Husband 37yrs, just diagnosed, many questions?

Tonya,

I had stage 4 Rectal cancer. Read all about my case in thread "Rectal Cancer Stage III (Age 35) what to expect". I was diagnosed last year.

All I can say right now, is wait for CT Scan and rectal untrasound results for staging.

Just keep in mind one thing, there is a tough road ahead you and him.

Now just take one day at a time, enjoy life as much as you can. Initially it will be very difficult, but once the radiation/chemo will start, it will be much easier emotionally.

And did I mention, you will be posting a much happier note here, one year from now when he is cancer free.

Good luck and keep us posted. This will be a very good forum to keep yourself sane during your/his fight with cancer.

 
Old 07-27-2006, 03:30 PM   #3
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Re: Husband 37yrs, just diagnosed, many questions?

HI Tonya,
I am so sorry about your husband's diagnosis. My husband had a similar diagnosis last year at this time. He went in for a routine colonoscopy and a large flat tumor was found high up in his rectum. ( He was 52 so we didn't have to fight for the test even though he didn't have ant symptoms at all) He was referred to the Mayo Clinic so that he would have a better chance to not end up with a permanent colostomy. Further testing at Mayo showed that at least 1 lymph node out of 11 tested positive for cancer so he was put at a stage III rectal cancer. He underwent 5 1/2 weeks of radiation treatments along with around the clock chemo infusion. He had a port a cath put in prior to chemo and every Monday went to the chemo ward to have his port flushed and a new bag of chemo hooked up that he carried around with a fanny pack. |We were told that he could have his radiation done at a cancer center closer to where we lived, but that on occasions they had patients that had bad radiation from other hospitals. We decided to have it done at Mayo as there was a slight difference in the location of the tumor from our local hospital. He was fortunate to be able to reside in the Hope Lodge in Rochester ,while he underwent his radiation treatments. Larry had none of the burning and blacking of the skin from radiation that we have read about in other posts.
In Oct. he had his surgery at the Methodist hospital in Rochester.(also part of the Mayo Clinic) His Doctors where able to remove his tumor and reconnect his colon to what remained of his rectum. He was given a temporary loop ileostomy that would be reversed after he completed a chemotherapy regimen.
He completed 6 months of chemo last May and had his reversal surgery 2 1/2 weeks ago. His prognosis looks good and hopefully the cancer won't return. He has been on disability since his first operation.. (He was able to work weekends during the radiation treatment) The chemo after his surgery was the hardest part of his treatment but we felt it was necessary because it gave him the best chance of not having the cancer return. His energy levels are getting better every day and his biggest problem is nerve damage in his hands and feet. He is planning on returning to his job the end of August.
I didn't mean to frighten you but before this all happened to us, I never imagined that it would take a whole year out of our lives. It is a small price to pay however for the chance for my husband to grow old with me. He is my best friend and I can't imagine a life without him in it.
It is going to be a hard road to travel but you are going to meet many angels along that road to help you. Hugs and Prayers, Kathy

 
Old 07-27-2006, 04:59 PM   #4
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Re: Husband 37yrs, just diagnosed, many questions?

Thanks so much for responding to my post. I told my husband about this board and I believe he will be reading and posting along with me. We just heard back that the CT scan that was done this am was good, it didn't show anything. However, the doctor said it's not completely reliable as it didn't even show his current existing tumor in the lower rectum. We go in the morning for the rectal ultrasound, which will tell us the staging of this thing.

Thanks for the support!
Tonya

 
Old 07-27-2006, 05:08 PM   #5
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Re: Husband 37yrs, just diagnosed, many questions?

Tonya:
I am a Stage 3C (T3N2M0) Rectal Cancer Survivor. I was dx almost 3 years ago at 31 with a golf ball size tumor 3cm from the anal verge. I have been though MUCH more than others on this Board in terms of side effects, etc.-- chronic pain, evenutually a colsostomy, an inability to urinate (I catheterize 6+ times a day) and am sexually impotent (non-responsive to ANY medication).

My case is kind of a worst case scenario, but I must tell you, if you and your husband want more children, he must freeze his sperm at a fertility clinic BEFORE beginning any treatment. His treatment is also going to depend on what stage they BELIEVE he is... they won't know for sure until after his surgery. I hope this doesn't offend you, but it IS VERY IMPORTANT to take care of this prior to beginning therapy.

Have they told you EXACTLY how far up is the tumor? And has he had a pet scan yet? A PET will determine whether he has any cancer elsewhere in his body. There are MANY other tests he will go through, and your heads will be spinning as you will most likely be in shock for a while. My wife and I have been through it all, and have two children now 10 and 7. I think we have A LOT of similarities and I would be HAPPY to talk with you or your husband to answer ANY questions. There are also many other great people on this board too.

You can also read my posts by clicking on my name.

Please know that there IS HOPE. Over the past few years even, there are new drugs available. Their are 3 BEST places spcecifically for Colorectal cancer:Cleveland Clinic, Lahey Clinic in Boston, and Heinamann Clinic (check spelling--I believe in Philidelphia). There are also the well known Cancer Centers. These places though specialize Directly on Colorectal Cancer versus the big centers concentrate on ALL kinds of cancer.
I can give further recommendations if you want them.

Enjoy your time with your family... my advice regarding your kids is, once you both have it under control, be honest with them. Kids hear things and know more than you think which can scare them more if you are not honest about what is going on. That was our motto... Mommy and Daddy will be honest with you about what the doctors tell us (of course you may want to adjust your story for age). But we believe honesty is the best policy...it worked for us. And it's ok for them to see you upset sometimes...they have already heard from SOMEONE in school about cancer, and you don't want them to automatically think their father has a death sentence because they heard something. This is why we felt it was best to talk to them openly, telling them that Dad will be taking special medicine and "having special lights" to kill the cancer... but it will also make him tired and sick sometimes because it kills the cancer, but it also kills good cells too. When Dad gets sick, it's a good sign, because it means the medicine is working.

I will tell you more if you want, when you want. It's SO NEW for you two though, that I don't want to overwhelm you about what needs to happen/is going to happen. As others have said, this will be a long haul, and a life changing event for the both of you. But YOU BOTH CAN AND WILL GET THROUGH THIS.

My wife and I always felt that Knowledge is Power.

Best of luck,
CancerDad
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ATTITUDE IS EVERYTHING!

 
Old 07-27-2006, 07:59 PM   #6
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Re: Husband 37yrs, just diagnosed, many questions?

I feel sick to my stomach thinking about all of this stuff, yet want to get as much info as I can. I do believe knowledge is power, and so far you all have offered alot of great knowledge, but furthermore, hope. Quite honestly when we found out, immediately I began worrying about life insurance, and life without him. The word "cancer" is just terrifying, and immediately your mind thinks the worst. I wasn't sure what this board would offer, maybe some good information on treatments, coping, etc. My emotions are all over the place, but I am seeming to feel a little bit calmer now after reading these posts. Even after we get the stage of this thing, it's encouraging to know that we have a chance in beating whatever the severity. Thank you all for your kind words, and thank you so much for opening up and sharing your real life stories as they are VERY encouraging. I haven't slept much in days, and I'm not so sure how tommorrow will go, but after reading all of this I feel like I need to get my rest and stop being so emotional. My husband isn't really coping with this stuff, or he is, by not being consumed by it. His spirits are high and he told me today that he needs to stay strong mentally. Two men friends came by this morning and prayed with him, and the phone calls keep coming in from neighbors/friends/family asking and offering of what they can do. My husband has been reading the sports page, and relaxing watching tv and resting alot. Much different for him, as he usually works 6 days a week 12-13 hrs. a day. I fed him a good dinner, and am trying to "fatten" him up, although everything goes right through him now, so I'm getting him whatever sounds good. He's 5'10" and weighs about 150 now, he used to weigh 165-170. I tend to relay him info as it comes in, and the comment that CancerDad made regarding his sperm was something I was talking with him today about. It seemed to go in one ear and out the other, but after being able to reinforce that same information from you, I think it held more weight.

Thanks for all the encouraging stories of hope, they mean alot.
Tonya

 
Old 07-28-2006, 05:22 AM   #7
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Re: Husband 37yrs, just diagnosed, many questions?

Hi Tonya,

I am sorry you are having to go through all this but I am glad you have come to the board for support. People here have a wealth of personal experience and lots of love and understanding. I can imagine your feelings right now....they are completely normal and expected in the circumstances. I realize that you are concerned about the future and it is good for you to think about it but not to worry too much about it....I know that is easier said than done! However, I have learnt to live much more for the day....take each one as it comes. Many times we worry about things that never happen but the worry has made us almost sick in the meantime...quite unnecessarily. I remember well the first day my husband was to start chemotherapy, I had tried to remain strong and in control up to that point, and I just burst into tears that morning. I was so afraid. He tolerated it pretty well though. Many times I cannot advise on chemotherapy treatment because, even though my husband was stage 111C, here in the Bahamas, they only give the standard 5Fu and leukovorin, so he did not have the more sophisticated medications which can have other side effects.

Even though my husband, who is older than yours, had several complications at surgery and thereafter, he was able to return to work part time five months after diagnosis and full time a year after. As soon as treatment finished after eight months, he started feeling better gradually.

If you can just look at this time as a phase in your lives and that this too will pass, it might help you deal with it. Having young children must be an added concern but there are others here in similar circumstances and who are advising and will continue to advise on how to keep them informed without alarming them. Look at CancerDad who has had an unbelievably difficult time, and continues to do so, but who is still posting and helping others. He and everybody else is a gem!

Keep posting and encourage your husband to read the posts, though mine never did!! Maybe some men are different from women in their approach. I know mine is! He really did and does not want to know! I want to equip myself and be mentally prepared for whatever might happen. I guess whatever works to help us through this is the way to go. We each have to find our own coping skills. Try and rest and relax if at all possible. You will need your strength over the next few months so you must look after yourself. Eat well, and if it becomes too much emotionally, speak to your doctor about it.

I have gone on too long...there is so much to say!!!

Love,
__________________
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 07-28-2006, 06:38 AM   #8
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Re: Husband 37yrs, just diagnosed, many questions?

Hi,

I just wanted to chime in briefly as another thirtysomething rectal cancer survivor! I DO wish these darn doctors would stop saying that colorectal cancer can't happen when you are under age 50! It is driving me crazy! Just browse this board a few minutes...

This will be a very trying time for you and your family. Take all the help that people offer (we had people bringing meals while I was under chemo/radiation and that was a tremendous help!) I am sure your husband is just so numb. He knows his role in his family and I am sure his mind is just going nonstop about the what ifs... Try to take it one day at a time...

Once you have the staging you will have a better idea of what is ahead. Likely he will need 5-6 weeks of chemo/radiation as others have already explained. Then a break, then surgery, then likely more chemo depending on the staging. He may need a temporary ileostomy while he heals from his first surgery...or if the tumor is too low he will need a permanent one.

Don't be afraid to get second opinions and to ask any questions on this board. This is a fine group of caring people who have all been there either themselves or as caregivers. This board has carried me through some very rough patches.

Best of luck to you...do keep us posted when you get your staging...

Take care,
cats

 
Old 07-28-2006, 10:34 PM   #9
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Re: Husband 37yrs, just diagnosed, many questions?

Hi all. It's been a long and emotional day today. We had the rectal ultrasound done and got the staging. I will post briefly the findings but will post later alot more details that I have questions with. I got all the measurments/locations, etc., that CancerDad had asked. My husbands results were T3,N1. Not sure exactly what this means, but the way I understood it, was that the tumor has just "slightly" entered into the muscle. The 3 lymphnodes near the tumor were enlarged. However the tumor itself is 5cm away from touching 1 of the enlarged lympnodes. I was very upset when finding out these results, but the doctor said it's actually good news because it's localized, and shows no sign of metastisized and that there were no enlarged lympnodes near the iliac vessels.

If it had not gotten onto the muscle, would it of been a t2? Also, what does N1 mean?

The doctor told me to keep my chin up as this is curable with chemo/radiation first, then removal of tumor, then more chemo/radiation. He said there is hope.

In my heart I knew that he wasn't going to be a t1-2, although you hope for that, but I prayed that he wasn't a t4 and that it hadn't metastisized. I have joy in my heart knowing there is hope. The news could of been much worse. My only fear now is that if they were being too optimistic and getting my/our hopes up. How do they really know that it is just localized? The ct scan came back clean, but it didn't even show his existing tumor. How accurate are these tests, and should I anticipate these stages possibly being off?

Thanks for listening-you guys are great!
Tonya

 
Old 07-29-2006, 12:38 AM   #10
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Re: Husband 37yrs, just diagnosed, many questions?

Quote:
Originally Posted by flygirl3
Hi all. It's been a long and emotional day today. We had the rectal ultrasound done and got the staging. I will post briefly the findings but will post later alot more details that I have questions with. I got all the measurments/locations, etc., that CancerDad had asked. My husbands results were T3,N1. Not sure exactly what this means, but the way I understood it, was that the tumor has just "slightly" entered into the muscle. The 3 lymphnodes near the tumor were enlarged. However the tumor itself is 5cm away from touching 1 of the enlarged lympnodes. I was very upset when finding out these results, but the doctor said it's actually good news because it's localized, and shows no sign of metastisized and that there were no enlarged lympnodes near the iliac vessels.

If it had not gotten onto the muscle, would it of been a t2? Also, what does N1 mean?

The doctor told me to keep my chin up as this is curable with chemo/radiation first, then removal of tumor, then more chemo/radiation. He said there is hope.

In my heart I knew that he wasn't going to be a t1-2, although you hope for that, but I prayed that he wasn't a t4 and that it hadn't metastisized. I have joy in my heart knowing there is hope. The news could of been much worse. My only fear now is that if they were being too optimistic and getting my/our hopes up. How do they really know that it is just localized? The ct scan came back clean, but it didn't even show his existing tumor. How accurate are these tests, and should I anticipate these stages possibly being off?

Thanks for listening-you guys are great!
Tonya
We all do it, but try not to think too far ahead. Your's is much better news than many of us had. It is very curable, especially because of his age. I had a surgeon who did the diagnosis tell me that even though my case was bad, stage iv, mets to the liver and abdomen, the fact that we are younger (46) makes us able to recover and take the chemo, surgery or whatever.

Its not an easy road, but we all are getting through it, you can too. None of us prepared for this it was thrown at us and we dealt with it, you will too. I had a nurse tell me today that more people are beating it or managing it just with chemo. Many doctors say that we are on the verge of managing many types of cancer. We're certainly beating it, or at least living longer and with a better quality of life while dealing with this thing.

So much can be said good and bad, but I choose to take the artistic approach, I'm dealing with the cancer, living with it, trying to let it go and accepting it, somtimes with tears, sometimes with laughter and joy. There have been many beautiful things that have been presented to me as I proceed through what I call my new life, which started after the diagnosis.

As Cancerdad says, attitude is everything....

 
Old 07-29-2006, 02:36 AM   #11
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Re: Husband 37yrs, just diagnosed, many questions?

hi Tonya
my husband was diagnosed nearly3 years ago stage 3, just through the bowel wall. luckly no lymph nodes affected. you will go through emotions that only the people who have been through it and that is all of us you are not alone. when i am having trouble dealing with things, my husband has times where his moods is all over the place, problems with erections, weeing, so it is trying times,read the board . it will give you and your husband the strength to get through it. we had first 6 weeks of radio/ chemo then break, then resection and then 6 weeks of chemo. currently in the clear, but had to have another resection due to a flat polyp which the couldnt remove. everything does go through your mind especially with the children, i was 4 weeks pregnant with out first child and was also told to store sperm, which we did. we would have loved more children but mick now is tired and it does take alot out of you, but you will come through it in the end and try to think positive even when its hard. read the board, so many people have given me strength just by reading what is happening to them. I hope all ges well and will be thinking of you and your family

 
Old 07-29-2006, 07:55 AM   #12
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Re: Husband 37yrs, just diagnosed, many questions?

T3 means that the cancer has grown through the mucosa, the submucosa and completely through the thick muscle layer. It has spread to the subserosa but not to any nearby organs or tissues.
N1 means that cancer cells have been found in 1 to 3 regional lymph nodes.
This is the staging my husband had also.
This info is from the "Colon and Rectal Cancer treatment guide for patients"
I got my copy at the cancer library at Mayo Clinic. It is put out by the American Cancer Society and it was the most helpfull guide we had for understanding staging and treatment options. Contact someone from the American cancer society in your area and reguest a copy. Hugs, Kathy

 
Old 07-29-2006, 09:21 AM   #13
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Re: Husband 37yrs, just diagnosed, many questions?

I guess I was tired last night when I wrote my post. The test results from the endoscopy did say that the tumor extends "slightly" beyond the muscularis propia. In other words, it has gone completely through the muscle, right?

Here are some more findings. CancerDad, here is the location/size, could you tell me in your opinion what type of surgery will be needed. Yesterday at the hosp., all my husband could keep asking was about if he was going to need a bag? They wouldn't comment, because he wasn't a surgeon.

findings- The tumor visualized endoscopically to extend from just above the dentate line at 5cm to approx. 8cm to the first valve posteriorly. On EUS, the tumor extends from just above the top of the anal canal to 10cm. The internal and external sphincters appeare intact from top to the bottom of the canal. At 15cm, three round, hypoechoic lymph nodes were observe with largest ones measuring 5mm. No lymphadenopathies at the iliac vessels area. No FNA done.

diagnosis- Rectal adenocarcinoma, extending from 5cm to 10cm in the posterior location abutting the top of the sphinteric muscles without involving it at the top of the canal with associated lymphadenopathies at 15cm. Stage T3, likely N1, Mx.

What does the Mx mean? Also, any info on what to expect as far as surgery goes. I would be curious to hear from Larbos wife as it was the same diagnoses---also CancerDad, what's your opinion on the surgery?

Thanks again--trying to stay positive!
Tonya

 
Old 07-29-2006, 10:52 AM   #14
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Re: Husband 37yrs, just diagnosed, many questions?

My book says that M0 means no distant spread. M1 means distant spread is present. I would guess that MX means the same as M0
My husband's tumor was very near the sigmoid colon. He was told that most likely he would end up with a permanent colostomy. Thanks to a very talented surgeon, he only had to have a ostomy for the duration of his post operative chemo. He had his reversal surgery on July 11th and is doing well. Kathy
P.S. Larry really didn't find having to live with a bag attached all that bad. Only after he developed a hernia did he start to have issues with stool leakage and wear time. Also, having a stoma at the ilium is harder to manage than one at the large intestine would be. If he would have needed a permanent stoma it would have been located on the other side on the colon. Hope this helps. Kathy

 
Old 07-29-2006, 01:32 PM   #15
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Re: Husband 37yrs, just diagnosed, many questions?

Hi,

I looked on the internet and found that Mx means that distant metastis had not yet been determined. ?? I wonder why yesterday the doctor that did the test told me that it was not terrible news becuase it had not metatisized? But, Mx means that it hadn't yet been determined. Maybe it was his guess since he only did a rectal ultrasound, and asked me if the ct scan had come back normal in which it did, but the ct scan didn't even show his existing tumor in the rectum?

I guess I will address this on Mon. w/ the oncologist. What type of test could be done to see if it had metastisized?

tonya

 
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