STAGE III COLORECTAL CANCER - ADJUVANT CHEMO/RADIATION THERAPY

Gavin63
Gavin63 Member Posts: 98 Member

I am 50 years old. I was diagnosed of having a Cancer in my rectum in early July 2013 & underwent a surgery to remove the tumour in late July. Post operative Pathology report confirmed that it is a stage III Colorectal Cancer with regional Metastasis in 4 surounding Lymph Nodes. According to the Surgeon who operated me, the Tumour was successfully removed with distal margins from both ends including surrounding Lymph Nodes. I have now fully recovered from my surgery & met my Oncologist 2 days ago to discuss the Adjuvant Chemo Therapy. He said that based on the stage of my cancer I will have to go through around 8 cycles of Chemo Therapy. His preferred treatment for me would be a combination of Capecitabine & Oxaliplatin (CAPOX) However he has reffered me to a Radiation Oncologist for his opinion as to whether I would need to go through a radiation therapy targeting the area where I had the  the tumour. I am told that the Radiation may require to prevent any local recurrence of the cancer in the future.

I am just beginning my journey & would like to hear from fellow CSN memebers of any similar experience & how they fared during the treatment process, Sequence of the treatment (which therapy was given 1st) Side Effects of Chemo & Radiation Therapy they experienced. 

Gavin 63       

2013-09-06

«1

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Friend,

    I was diagnosed with a large Stage 2 rectal cancer back in May. My tumor is very close to the opening. I spoke to 4 surgeon at the time and they all agreed that we need to shrink the tumor first with ratiantion and oral chemo. I went trough 5 weeks of that and now I'm awaiting surgery. 

    As you can see our treatment plan is pretty different. In your case is very common that they follow up with chemo, but at least I did not hear anyone here to have radiation after surgery when they removed everything cancerous. But I let others comment on that.

    My advise to you is to get 2-3 opinions before you decide on the radiation and have them justify why you need it if you do. Chemo is pretty routine as I said.

    Let us know and good luck with everything,

    Laz

  • YoVita
    YoVita Member Posts: 590 Member
    Very similar experience

    .... first off - I'm still here - almost 4 years out!  

    I too was diagnosed stageIIIC rectal - 10 of 24 lymph nodes involved.  Surgery first, then chemo (folfox), radiation 5-6 weeks with chemo too, then chemo (folfox) again.  My treatment was fairly standard for my stage of rectal cancer except that the chemo and/or radiation are often given before the surgery.  My plans worked for me.  I had many chemo and radiation side effects.  Some are permanent, most went away following treatment.  I'm happy to respond to specific questions, and I often do if I share the same side effects, etc.  I don't post much anymore, partly because there aren't too many presenting the same situation as mine.  It's going to be a challenging year for you but try to focus on the future.  Best wishes to you!    

  • Sooker55
    Sooker55 Member Posts: 21 Member
    Hi Gavin,
    i was diagnosed in

    Hi Gavin,

    i was diagnosed in June but have not begun treatment because I am getting conflicting advice from respectd oncologists.  One says chemoradiation now followed by surgery, the other says surgery and then adjuvradiation radiation if needed, depending on staging. My stage is not yet pathologically proven. Lymph nodes are prominent, hence suspicious. i am glad to have a contact with someone doing chemoradiation after surgery cuz the docs at Univ of san francisco tell me that results in poor bowel outcome as opposed to neoadjavant therapy,and then surgery. I think a lot depends on the skill of the surgeon.  I would very much appreciate hearing how you are tolerating the treatment. 

  • Sooker55
    Sooker55 Member Posts: 21 Member
    YoVita said:

    Very similar experience

    .... first off - I'm still here - almost 4 years out!  

    I too was diagnosed stageIIIC rectal - 10 of 24 lymph nodes involved.  Surgery first, then chemo (folfox), radiation 5-6 weeks with chemo too, then chemo (folfox) again.  My treatment was fairly standard for my stage of rectal cancer except that the chemo and/or radiation are often given before the surgery.  My plans worked for me.  I had many chemo and radiation side effects.  Some are permanent, most went away following treatment.  I'm happy to respond to specific questions, and I often do if I share the same side effects, etc.  I don't post much anymore, partly because there aren't too many presenting the same situation as mine.  It's going to be a challenging year for you but try to focus on the future.  Best wishes to you!    

    Can you please tell me why

    Can you please tell me why you had surgery first? That is a bit unusual, but it is the treatment I am considering. Just wondering as to your reasoning. 

  • YoVita
    YoVita Member Posts: 590 Member
    Sooker55 said:

    Can you please tell me why

    Can you please tell me why you had surgery first? That is a bit unusual, but it is the treatment I am considering. Just wondering as to your reasoning. 

    my situation

    I had surgery first because my surgeon knew the tumor was low but didn't  know it was rectal until surgery. My team which consisted of surgeon , oncologist, radiation oncologist proscribed  treatment plan which I agreed with. The circumstances and post surgery discoveries determined the plan. The view of the gastroenterologist and surgeon  at the time of diagnosis was that the large tumor had to come out fast and so I agreed.  Good luck with your decision.

  • Gavin63
    Gavin63 Member Posts: 98 Member
    YoVita said:

    my situation

    I had surgery first because my surgeon knew the tumor was low but didn't  know it was rectal until surgery. My team which consisted of surgeon , oncologist, radiation oncologist proscribed  treatment plan which I agreed with. The circumstances and post surgery discoveries determined the plan. The view of the gastroenterologist and surgeon  at the time of diagnosis was that the large tumor had to come out fast and so I agreed.  Good luck with your decision.

    Hello YoVita,
    My sincere

    Hello YoVita,

    My sincere thanks to you for taking time to reply me twice with your experience. My case is also very similar to you. My Gastroenterologist said that the tumour was in the sigmoid juction. He didn't pass the scope beyond the tumour because he felt that the passage was too narrow & directed me to the surgeon. His advise to me was, to under go the surgery ASAP before it could become an emergency surgery irrespective of what the pathology report of the Colonoscopy is going to be. When I met the surgeon he requested for a CT scan (with the contrast dye) of my abdoman (to determine how far the tumour had grown in side) & chest for sign of any distant Metastasis. Following the CT scan it was revealed that the liver, lungs, were clear & the tumor was in the upper rectum & confined only in side the rectum. But he suspected the involvement of few Lymph Nods just out side the tumour, His plan was to remove the tumour (which was the size of a large Cherry) with a considerable distal margins at both ends along with the surrounding Lymph Nodes to ensure that no more parts of the tumour remains after the resection of rectum. I escaped the hassle of a Colostomy because I had a little bit of the lower end of my rectum still remaining. Openion of my surgen was to go for the Chemo Therapy once I fully recover from the surgery. When I met the Oncologist, he suggested that I see a Radiation Oncologist 1st to determine whether I will require radiation or not. His explanation was that the number of Lymph Nodes (8 in total with 4 nodes involved) removed was not enough to rule out that there are no more involved Lymph Nodes still remaining. But my surgeon is not all that convinced that I should under go radiation therapy. He was so kind enough to volunteer to explain the Radiation Oncologist (when I meet him) of what happen during the surgery if it helps him in any way to give his opinion on the radiation therapy. Any way I have decided to seek the opnion of the Radiation Oncologist on this Monday & take it up from there onward. Since both our cases are very similar I would like to share your thoughts of my proposed treatment Chemo (Capox) + Radiation (If required ???) If the Radiation will reduce the risk of the Tumour coming back locally in the future then it is justified though I may end up with temporary/permanent side effects due to radiation. What was the justification your radiation Oncologist gave you for radiation you went through?

    My kids are still small & in the age around 12 years. So, I still have big responsibilities towards my family & want to fight the decease with a very postive frame of mind. I am glad that I joined the CSN and so happy to see the care & concern of the memebers towards each other.

                     

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Welcome

    First of all, welcome to the boards.  Glad that you found us, but sorry you had too.  Here you will find a great group of people who can help you get through this and answer most of your questions through our own experience.  My tumor was rectal and had chemo/radiation for six weeks, then surgery where they removed my rectum and made a new one from the colon.  My surgeon gave me a temporary ileostomy.  Six weeks after surgery was more chemo, oxy, folfox.  Please tell your oncologist everything that you feel as the oxy is cumulative and can leave you with neuropathy (numbness of hands and feet).  7 months after initial surgery the ileostomy was reversed.  Good luck with your upcoming treatment.  Don't hesitate to ask any questions as we have covered almost every subject.  Also, please remember to ask questions with your doctors and don't settle for basic answers.  Make sure that you understand fully what you should expect.  Once again, welcome.

    Kim

  • John23
    John23 Member Posts: 2,122 Member
    Gavin63 said:

    Hello YoVita,
    My sincere

    Hello YoVita,

    My sincere thanks to you for taking time to reply me twice with your experience. My case is also very similar to you. My Gastroenterologist said that the tumour was in the sigmoid juction. He didn't pass the scope beyond the tumour because he felt that the passage was too narrow & directed me to the surgeon. His advise to me was, to under go the surgery ASAP before it could become an emergency surgery irrespective of what the pathology report of the Colonoscopy is going to be. When I met the surgeon he requested for a CT scan (with the contrast dye) of my abdoman (to determine how far the tumour had grown in side) & chest for sign of any distant Metastasis. Following the CT scan it was revealed that the liver, lungs, were clear & the tumor was in the upper rectum & confined only in side the rectum. But he suspected the involvement of few Lymph Nods just out side the tumour, His plan was to remove the tumour (which was the size of a large Cherry) with a considerable distal margins at both ends along with the surrounding Lymph Nodes to ensure that no more parts of the tumour remains after the resection of rectum. I escaped the hassle of a Colostomy because I had a little bit of the lower end of my rectum still remaining. Openion of my surgen was to go for the Chemo Therapy once I fully recover from the surgery. When I met the Oncologist, he suggested that I see a Radiation Oncologist 1st to determine whether I will require radiation or not. His explanation was that the number of Lymph Nodes (8 in total with 4 nodes involved) removed was not enough to rule out that there are no more involved Lymph Nodes still remaining. But my surgeon is not all that convinced that I should under go radiation therapy. He was so kind enough to volunteer to explain the Radiation Oncologist (when I meet him) of what happen during the surgery if it helps him in any way to give his opinion on the radiation therapy. Any way I have decided to seek the opnion of the Radiation Oncologist on this Monday & take it up from there onward. Since both our cases are very similar I would like to share your thoughts of my proposed treatment Chemo (Capox) + Radiation (If required ???) If the Radiation will reduce the risk of the Tumour coming back locally in the future then it is justified though I may end up with temporary/permanent side effects due to radiation. What was the justification your radiation Oncologist gave you for radiation you went through?

    My kids are still small & in the age around 12 years. So, I still have big responsibilities towards my family & want to fight the decease with a very postive frame of mind. I am glad that I joined the CSN and so happy to see the care & concern of the memebers towards each other.

                     

     

    Gavin63 –

     

    I would strongly recommend that you get your opinions from experienced colorectal surgeons, and not oncologists. Surgeons are more objective regarding cancer and see the aftermath of chemo and radiation treatments.

     

    Having a colostomy is no big deal. Having the tumor surgically removed is the sure way to know it’s gone. Radiation radiates. Period. And it has more complications of side effects than people are informed of. Both chemo and radiation often easily miss what the surgeon can see…..

     

    Your comment: “….Radiation will reduce the risk of the Tumour coming back locally…… does not hold truth. Cancer returns all too often, regardless of treatment. But you should have been made aware that radiation causes cancer. Likewise, all chemicals used for present cancer chemical therapy treatments are known to be carcinogenic. You can research each treatment chemical and see that for yourself.

     

    There presently is no “preventative medicine” for cancer. Neither chemo or radiation has any use as a preventative measure. Both treatments are designed to attack tumors, not seek out and destroy individual cancer cells, and certainly not to prevent possible future occurrences.

     

    Please do yourself a major favor and seek the opinion of colorectal surgeons that are not of the same group or organization as your present “team”. You need sound advice.

     

    And please do not jeopardize your chances for survival by a fear of having an Ostomy; ostomies have saved more lives than they have ever damaged them. Aesthetics and vanity have no place in a life or death decision.

     

    You’ll do fine, but do not ever, ever allow fear to guide you; take your time and get other qualified opinions from colorectal surgeons.

     

    My best to you,

     

    John

     

  • Bee bee
    Bee bee Member Posts: 27
    Gavin63 and Sooker55

     I'll share what I've learned so far.

    Per my colorectal surgeon, rad onc & med onc, they all agreed that it depends on what specific type of cancer and what stage. 

    I am stage IIIB rectal cancer with 5 lymph nodes involved. The standard of care is usually neoadjuvant chemo (Xeloda or 5FU) concurrently with radiation, followed by surgery, followed by adjuvant chemo (5-FU, Leucovorin, Oxaliplatin).

    i have completed the first phase- chemorad. For me, the side effects from radiation were worse than chemo and I fear that I will have long-term or permanent harmful side effects. Rather than repost, see my recent post regarding my experience. I did the rad despite knowing possible side effects due to the size of my tumor 5cm & extremely close location near the sphincter. I read about the clinical trials showing better outcomes for those having chemorad before, rather than after surgery, and this corroborated all my docs' advice to me. I should also note that all of my docs are not in the same group, rather independent practices, so there is no collusion together to convince me of one treatment over another.

    i agree with john23 & Laz that you need to get more opinions on why you need radiation after surgery. My surgeon said that during surgery, he would remove not only the tumor, but also radiated and necrotic cells or tissue which ideally should not remain in your body. I'm not sure how it works if you have radiation afterwards. I don't see how it would be any more helpful than future  surgery or chemo if you have recurrence.

    Sooker, I was diagnosed around the same time as you and have finished chemorad. I know you are exploring treatment options, but please try not to delay any longer if you can. i think sometimes cancer spreads more quickly than docs think and you need to give yourself the best chance to fight this as early as possible. I already have lymph nodes involved. I would give anything to not have had it spread even there.

    if either of you are inclined, you may want to do on-line research in addition to the forums. This is my own life and health at stake and I am treating it at least like a part-time job to educate myself as much as possible about my cancer and treatment. 

  • Gavin63
    Gavin63 Member Posts: 98 Member
    lp1964 said:

    Dear Friend,

    I was diagnosed with a large Stage 2 rectal cancer back in May. My tumor is very close to the opening. I spoke to 4 surgeon at the time and they all agreed that we need to shrink the tumor first with ratiantion and oral chemo. I went trough 5 weeks of that and now I'm awaiting surgery. 

    As you can see our treatment plan is pretty different. In your case is very common that they follow up with chemo, but at least I did not hear anyone here to have radiation after surgery when they removed everything cancerous. But I let others comment on that.

    My advise to you is to get 2-3 opinions before you decide on the radiation and have them justify why you need it if you do. Chemo is pretty routine as I said.

    Let us know and good luck with everything,

    Laz

    Dear Laz,
    Thank you for

    Dear Laz,

    Thank you for sharing your thoughts. The Tumour in my rectum was the size of a large Chery. According to my Surgeon the Tumour could easily be removed by surgery as it was not a large tumour. You have a valid point. Tumour was surgically removed with distal margins from both ends alongwith the surrounding Lymph Nodes. Post surgery Pathology report too confirmed that no cancer cells on both ends of the removed rectum + my surgeon was confident that the tumour was completely removed & he is the person who has seen everything to his own eyes rather than Images. I had my full confidence on him & am sure that he did a perfect job though I was put to a long sleep by my Anaesthetist :)

    My Surgeon is not in favour me going in for Radiation treatment (unless it can be well justified) due to the fact that there is no more tumour left in my rectum. So I have decided that I will get at least 2 more opinions as to whether I need radiation or not & then make the call.But Adjuvant Chemo is a must.

    Just to share my experience with you as to how I fared after the surgery. I was in hospital for 6 days and fully recovered within around 3 weeks. They very well managed my post surgery pain with Epidural Anelgesia & pains were minimal. Again thanks to my Surgeon. Good luck to you too on your surgery & I wish you a speedy recovery.

    Gavin                 

     

  • tommycat
    tommycat Member Posts: 790 Member
    Hi Gavin

    I was dx was Stage 3 rectal cancer in 2009 and did before and after chemo, and radiation before the surgeries. 

    It is my understanding that rad is used to shrink rumors to make them more operable and in our case, to leave as much of the rectum as possible. Radiation after surgery doesn't make sense......

    John23 suggested seeing a colorectal specialist ASAP, and I heartily endorse and second that suggestion. The skill of your surgeon is going to greatly influence your outcome.

    Btw, out of all the unpleasantness that comes with cancer, radiation for me hoverered at #1. The burning of the tissue hurts and it is a pain that keeps giving every time you go to the bathroom. Pain meds may dull the pain, but they also make it nearly impossible to have a BM. This pain is unbelievable.I had to do it to have the surgery, but if you don't need it beforehand, I would seriously question your onc, and maybe interview another one or two.

    good luck to you and welcome~

    tommycat

    P.S: I am currently showing No Evidence of Disease (NED) on my labs, and it's been four years :)

     

  • YoVita
    YoVita Member Posts: 590 Member
    Gavin63 said:

    Hello YoVita,
    My sincere

    Hello YoVita,

    My sincere thanks to you for taking time to reply me twice with your experience. My case is also very similar to you. My Gastroenterologist said that the tumour was in the sigmoid juction. He didn't pass the scope beyond the tumour because he felt that the passage was too narrow & directed me to the surgeon. His advise to me was, to under go the surgery ASAP before it could become an emergency surgery irrespective of what the pathology report of the Colonoscopy is going to be. When I met the surgeon he requested for a CT scan (with the contrast dye) of my abdoman (to determine how far the tumour had grown in side) & chest for sign of any distant Metastasis. Following the CT scan it was revealed that the liver, lungs, were clear & the tumor was in the upper rectum & confined only in side the rectum. But he suspected the involvement of few Lymph Nods just out side the tumour, His plan was to remove the tumour (which was the size of a large Cherry) with a considerable distal margins at both ends along with the surrounding Lymph Nodes to ensure that no more parts of the tumour remains after the resection of rectum. I escaped the hassle of a Colostomy because I had a little bit of the lower end of my rectum still remaining. Openion of my surgen was to go for the Chemo Therapy once I fully recover from the surgery. When I met the Oncologist, he suggested that I see a Radiation Oncologist 1st to determine whether I will require radiation or not. His explanation was that the number of Lymph Nodes (8 in total with 4 nodes involved) removed was not enough to rule out that there are no more involved Lymph Nodes still remaining. But my surgeon is not all that convinced that I should under go radiation therapy. He was so kind enough to volunteer to explain the Radiation Oncologist (when I meet him) of what happen during the surgery if it helps him in any way to give his opinion on the radiation therapy. Any way I have decided to seek the opnion of the Radiation Oncologist on this Monday & take it up from there onward. Since both our cases are very similar I would like to share your thoughts of my proposed treatment Chemo (Capox) + Radiation (If required ???) If the Radiation will reduce the risk of the Tumour coming back locally in the future then it is justified though I may end up with temporary/permanent side effects due to radiation. What was the justification your radiation Oncologist gave you for radiation you went through?

    My kids are still small & in the age around 12 years. So, I still have big responsibilities towards my family & want to fight the decease with a very postive frame of mind. I am glad that I joined the CSN and so happy to see the care & concern of the memebers towards each other.

                     

     

    Hey there Gavin63

    Just to clarify my situation - my original surgery was for what was thought to be colon cancer (although very close to the rectum).  As the surgeon got inside and discovered the rectal location, and the number of lymph nodes involved, the surgeon also removed my appendix, and I had a full hysterectomy.  The surgeon was the one to strongly recommend radiation treatment.  It wasn't originally planned.  This was in February, 2010.  Even at that time, it was unusual to have surgery first, followed by treatment.  But there was a concern about the size of the tumor, the actual location (colon vs. rectum) and the surgeon felt he could successfully remove it and time was of the essence.  I did have a ctscan prior to surgery to see if there had been metastasis to other organs.  There hadn't at that time.  I don't regret my course of action.  I trusted my surgeon, oncologist and radiation oncologist (all in independent practices) (the radiation oncologist's staff in particular was exceptional in preparing me for the side effects to come).  All the decisions were mine.  I never felt coerced.  I don't think we can really know if having radiation prevented a reoccurrance in the pelvic area (which is the goal for rectal cancer since it often reoccurs in that area within the first few years following surgery/radiation treatment).  So far I have not had a recurrence in the rectal area but it's hard to prove a negative, isn't it.  At the original diagnosis and following the surgery, I was physically strong and in good shape and wanted all guns fired.  Everybody is different.  I can't stress that enough.  You might consider checking out nccn.org.  It's a very thorough site, with specifics for each cancer.  I can tell you that it's one of the go-to sites for the medical profession but is understandable to lay people such as myself.  You do have to register as a patient to access the major data but I have never received junk email from them.  I have used nccn.org for the one reoccurance I have had (so far) - a single lung nodule which was a metastis from my original rectal cancer and so, yes, I am now stage IV metastisized rectal cancer.  I found it particularly helpful in deciding whether I should have chemo following the lung surgery - I did not.  You sound like you're very grounded, doing your own research.  That's good.  This site (CSN) is particularly helpful for sharing side effect strategies and general support!  I am here for you for both!  Rely on yourself, family and medical team to help you determine your plan.  Looks like you've gotten some great support from others.  Good luck to you.  I'll keep my eye out for your postings.     

  • Gavin63
    Gavin63 Member Posts: 98 Member
    John23 said:

    Gavin63 –

     

    I would strongly recommend that you get your opinions from experienced colorectal surgeons, and not oncologists. Surgeons are more objective regarding cancer and see the aftermath of chemo and radiation treatments.

     

    Having a colostomy is no big deal. Having the tumor surgically removed is the sure way to know it’s gone. Radiation radiates. Period. And it has more complications of side effects than people are informed of. Both chemo and radiation often easily miss what the surgeon can see…..

     

    Your comment: “….Radiation will reduce the risk of the Tumour coming back locally…… does not hold truth. Cancer returns all too often, regardless of treatment. But you should have been made aware that radiation causes cancer. Likewise, all chemicals used for present cancer chemical therapy treatments are known to be carcinogenic. You can research each treatment chemical and see that for yourself.

     

    There presently is no “preventative medicine” for cancer. Neither chemo or radiation has any use as a preventative measure. Both treatments are designed to attack tumors, not seek out and destroy individual cancer cells, and certainly not to prevent possible future occurrences.

     

    Please do yourself a major favor and seek the opinion of colorectal surgeons that are not of the same group or organization as your present “team”. You need sound advice.

     

    And please do not jeopardize your chances for survival by a fear of having an Ostomy; ostomies have saved more lives than they have ever damaged them. Aesthetics and vanity have no place in a life or death decision.

     

    You’ll do fine, but do not ever, ever allow fear to guide you; take your time and get other qualified opinions from colorectal surgeons.

     

    My best to you,

     

    John

     

    Hi John,
    Thank you so much

    Hi John,

    Thank you so much for sharing your thoughts with me & the positive advises. I feel good when I read the advises & experieincses of the network memebers. Though I am happy that I didn't need a Colostomy & had the circumstances demanded I would have taken it up without any regret as you very correctly said Asthetics & vanity has no place in a life or death decision.

    Coming back to Opinions of Colorectal surgeons, I fully agree with you as the suregeon precisely have seen what was in side & what he did with it. Hence I will go for openions of colo rectal surgeons for sure before I make up my mind as to whether I will opt for Radiation or not. On my Chemo, I am happy with the suggestion of my Oncologist. (CAPOX) as that is the treatment that I thought would suit me best.

    Thanks again for your thoughts. I will keep your folks up dated on my journey.

    Gavin 

     

  • Gavin63
    Gavin63 Member Posts: 98 Member
    YoVita said:

    Hey there Gavin63

    Just to clarify my situation - my original surgery was for what was thought to be colon cancer (although very close to the rectum).  As the surgeon got inside and discovered the rectal location, and the number of lymph nodes involved, the surgeon also removed my appendix, and I had a full hysterectomy.  The surgeon was the one to strongly recommend radiation treatment.  It wasn't originally planned.  This was in February, 2010.  Even at that time, it was unusual to have surgery first, followed by treatment.  But there was a concern about the size of the tumor, the actual location (colon vs. rectum) and the surgeon felt he could successfully remove it and time was of the essence.  I did have a ctscan prior to surgery to see if there had been metastasis to other organs.  There hadn't at that time.  I don't regret my course of action.  I trusted my surgeon, oncologist and radiation oncologist (all in independent practices) (the radiation oncologist's staff in particular was exceptional in preparing me for the side effects to come).  All the decisions were mine.  I never felt coerced.  I don't think we can really know if having radiation prevented a reoccurrance in the pelvic area (which is the goal for rectal cancer since it often reoccurs in that area within the first few years following surgery/radiation treatment).  So far I have not had a recurrence in the rectal area but it's hard to prove a negative, isn't it.  At the original diagnosis and following the surgery, I was physically strong and in good shape and wanted all guns fired.  Everybody is different.  I can't stress that enough.  You might consider checking out nccn.org.  It's a very thorough site, with specifics for each cancer.  I can tell you that it's one of the go-to sites for the medical profession but is understandable to lay people such as myself.  You do have to register as a patient to access the major data but I have never received junk email from them.  I have used nccn.org for the one reoccurance I have had (so far) - a single lung nodule which was a metastis from my original rectal cancer and so, yes, I am now stage IV metastisized rectal cancer.  I found it particularly helpful in deciding whether I should have chemo following the lung surgery - I did not.  You sound like you're very grounded, doing your own research.  That's good.  This site (CSN) is particularly helpful for sharing side effect strategies and general support!  I am here for you for both!  Rely on yourself, family and medical team to help you determine your plan.  Looks like you've gotten some great support from others.  Good luck to you.  I'll keep my eye out for your postings.     

    Hi YoVita,
    Thank you for

    Hi YoVita,

    Thank you for sharing your experience. In my case, my surgeon knew exactly where the tumour was. Report of my colonoscopy & the CT scan that was done before the surgery established the tumour location. CT scan confirmed that no metastation in other organs & that was a concelation. He too was confident of removing the Tumour without having to shrink it (any was it was only the size of a large Cherry) I had my full confidence on him & he did an exceilent job with the surgeory. Though he said that I have to go through the Adjuvant Chemo Therapy followed by the surgery, was never in favour of Radiation. He predicted that I would end up stage III with Nodes positive & the post surgery pathology report confirmed it. It's my Oncologist who suggested to go for an opinion of a radiation oncologist. 

    May I ask you as to why your surgeon was strongly recommending you to go for the radiation treatment ? Since the case of yours & mine is very similar I would love to hear from you on this matter as that is the area I am debating with myself whether to go for Chemo / Radiation or only do the Chemo. Anyway I will be taking a decision soon as to whether I will go for Chemo Radiation or only Chemo. 

    Sad to hear that you had a nodule in your lung. I hope & pray that your medical team will successfully deal with it & am sure they will do. My prayers are with you. All of us are having a common goal to fight this ruthless decease & survival is the name of the game. Please do stay in touch.

    Gavin     

     

  • YoVita
    YoVita Member Posts: 590 Member
    Gavin63 said:

    Hi YoVita,
    Thank you for

    Hi YoVita,

    Thank you for sharing your experience. In my case, my surgeon knew exactly where the tumour was. Report of my colonoscopy & the CT scan that was done before the surgery established the tumour location. CT scan confirmed that no metastation in other organs & that was a concelation. He too was confident of removing the Tumour without having to shrink it (any was it was only the size of a large Cherry) I had my full confidence on him & he did an exceilent job with the surgeory. Though he said that I have to go through the Adjuvant Chemo Therapy followed by the surgery, was never in favour of Radiation. He predicted that I would end up stage III with Nodes positive & the post surgery pathology report confirmed it. It's my Oncologist who suggested to go for an opinion of a radiation oncologist. 

    May I ask you as to why your surgeon was strongly recommending you to go for the radiation treatment ? Since the case of yours & mine is very similar I would love to hear from you on this matter as that is the area I am debating with myself whether to go for Chemo / Radiation or only do the Chemo. Anyway I will be taking a decision soon as to whether I will go for Chemo Radiation or only Chemo. 

    Sad to hear that you had a nodule in your lung. I hope & pray that your medical team will successfully deal with it & am sure they will do. My prayers are with you. All of us are having a common goal to fight this ruthless decease & survival is the name of the game. Please do stay in touch.

    Gavin     

     

    Hey Gavin

    Remember this happened almost 4 years ago.  It was the recommended treatment at the time for rectal cancer given my situation.  Please do not base your decision on my situation.  I suggest you ask your surgeon why he's not recommending radiation.  I'm sure there's a sound reason for it.  We're all different and treatment plans have changed a lot even in a few years' time.  My nodule has been removed with clear margins and a follow-up clear ctscan since so I'm in pretty good shape.  Thank you for your concern.  Good luck to you!    

  • Gavin63
    Gavin63 Member Posts: 98 Member

    Welcome

    First of all, welcome to the boards.  Glad that you found us, but sorry you had too.  Here you will find a great group of people who can help you get through this and answer most of your questions through our own experience.  My tumor was rectal and had chemo/radiation for six weeks, then surgery where they removed my rectum and made a new one from the colon.  My surgeon gave me a temporary ileostomy.  Six weeks after surgery was more chemo, oxy, folfox.  Please tell your oncologist everything that you feel as the oxy is cumulative and can leave you with neuropathy (numbness of hands and feet).  7 months after initial surgery the ileostomy was reversed.  Good luck with your upcoming treatment.  Don't hesitate to ask any questions as we have covered almost every subject.  Also, please remember to ask questions with your doctors and don't settle for basic answers.  Make sure that you understand fully what you should expect.  Once again, welcome.

    Kim

    Hi Kim,
    Thank you for sharing

    Hi Kim,

    Thank you for sharing your experience & also the advises. I agree that CSN is a very good platform to help each other, especially when it comes to individual experineces of the journey. I have one question. What was the reason for you to go for Chemo / Radiation 1st & then surgery ? Was your tumour too large to remove surgically & had to shrink it before the surgery or any other reason ? Would love to hear from you on this.

    Gavin     

  • Gavin63
    Gavin63 Member Posts: 98 Member
    tommycat said:

    Hi Gavin

    I was dx was Stage 3 rectal cancer in 2009 and did before and after chemo, and radiation before the surgeries. 

    It is my understanding that rad is used to shrink rumors to make them more operable and in our case, to leave as much of the rectum as possible. Radiation after surgery doesn't make sense......

    John23 suggested seeing a colorectal specialist ASAP, and I heartily endorse and second that suggestion. The skill of your surgeon is going to greatly influence your outcome.

    Btw, out of all the unpleasantness that comes with cancer, radiation for me hoverered at #1. The burning of the tissue hurts and it is a pain that keeps giving every time you go to the bathroom. Pain meds may dull the pain, but they also make it nearly impossible to have a BM. This pain is unbelievable.I had to do it to have the surgery, but if you don't need it beforehand, I would seriously question your onc, and maybe interview another one or two.

    good luck to you and welcome~

    tommycat

    P.S: I am currently showing No Evidence of Disease (NED) on my labs, and it's been four years :)

     

    Hi Tommycat,
    Thanks. I am

    Hi Tommycat,

    Thanks. I am getting good response from all of you. Sharing of your experinece with us is great. I have answers for most of the questions that I had. I have decided to get more opinions on radiation after surgery from few more surgeons. Hopefully I will make my decision very soon as I don't want to delay what ever the treatment I am going to do.

    I am so glad to hear that your are currently showing NED. My prayers are with you for a permenent clearance. Keep going well it encourages everyone in the group :)    

    Gavin

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    Hi Gavin 63,
    First of all,

    Hi Gavin 63,

    First of all, welcome!! I am sorry you have to be here ... but it is a very helpful forum as you can see. 

    I agree with all here ... but will add that I also received conflicting opinions for a care plan after surgery.  I feel that these opinions will vary depending on which type of doctor you seek your opinions with.  Surgeons, oncologists or radiation specialists.  With that, I went to several different reputable facilities, did a lot of research, and asked a lot of questions.  What I decided was what I believe to be the best for me and my particular situation. I chose no radiation at this time .. but Adjuvant Chemo. (I also had conflicting opinions for what drugs to take if any!!)  I really had to do my homework and make my own decision with guidance from those I trusted had my best interest in mind.

    I will also add that my decision did ultimately fall in line with the two reputable surgeons.  (I sought the opionions of 2 of each doctor, the two that agreed happend to be surgeons)  I also agree that these are the ones who see the ramifications of our treatments later down the line.  I can also attest that neither of the surgeons had any desire to do any more surgical procedures than were absolutely necessary.  

    Please remember that we are all different as to our tumor location, size, age, health, risk factors, complications if any, life styles, and what WE want for our future quality of life etc.  What may be acceptable for one may not for another.

    What we all share is this horrific disease and the insatiable desire to live as we once had, or at least to the best we can now, and hope for NED.

    I also had all of my tumor removed prior to treatment, same lymph involvement and stage.  I know others in the same setting, also only having Adjuvant Chemo and currently NED after several years, but in their situation radiation was not even suggested.  Just FOLFOX. 

    I feel I may at some point have to revisit radiation, but I will have that option then, and if necessary use it. 

    Please also remember, just because you may have radiation to the pelvis/rectum, the cancer can come back anywhere or not at all! Cancer is unpredictable at the very least.  I think through all of this I have learned that not even the best of the best doctor can be certain, even slightly of what our ultimate outcome will be.  It is our job to do what is best for us and make the best decisions with our learned information.

    My best advise is that of others here, seek other opinions from separate facilities.  Do your research with REPUTABLE sources.  Speak to family or those close to you that you trust.  Do what you feel is right for you in your cicumstance and you will be able to live with regardless of the outcome in the future.  Remember .. this is cancer .. it is horrific, it is serious, and it is your life.

    My best to you!! Cool

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Friend,

    In my opinion if the surgeon is certain that he removed everything that's suspicious I would only go with the chemo. We must understand that radiation is indicated and targeted to get rid of cancer cells in the area only. However radiation scan also "fry" the surrounding tissue, causing potentially permanent side effects like proctitis and even cancer in the future. 

    Chemo cleans up potential cancer cells anywhere they are in the body.

    Get many opinions and whatever you decide I wish you great luck and many happy healthy years to come.

    Laz

  • DD3
    DD3 Member Posts: 136 Member
    lp1964 said:

    Dear Friend,

    In my opinion if the surgeon is certain that he removed everything that's suspicious I would only go with the chemo. We must understand that radiation is indicated and targeted to get rid of cancer cells in the area only. However radiation scan also "fry" the surrounding tissue, causing potentially permanent side effects like proctitis and even cancer in the future. 

    Chemo cleans up potential cancer cells anywhere they are in the body.

    Get many opinions and whatever you decide I wish you great luck and many happy healthy years to come.

    Laz

    Gavin

    So sorry for your diagnosis.  My wife has stage IIIA.  She went through 28 treatments of chemo (xeloda)/radation.  Then surgery (had roughly ten inches of her colon removed) clean margins.  Now we are on treatment 8 of 12 of Folfox chemo. 

    This being said.  The surgeon pretty much knew radiation wasn't going to disolve the tumor entirely.  But, shrink it to a more manageable size for surgery.  It did.  She had clean margins. 

    She now has "tempe."  That is the name of her temporary illeostomy.  I believe it has made going through FolFox easier. No dirrehea (sp?) and is able to manage output pretty well.  She has actually put some weight back on.   She does look forward to her reversal though.

    Anyways, one step at a time.  You got this......