To Radiate or Not to Radiate, That is Our Question...

NWmom
NWmom Member Posts: 80
edited March 2014 in Colorectal Cancer #1
My husband(age 36) has stage IV (colo)rectal cancer with liver mets. Officially, T2N2M1. He was misdianosed for at least 2 years, but that is another story. He has a colon resection on Oct. 21st, where they removed 8 inches of his colon and a golf ball section of his liver. They took out 45 nodes, 12 of which were cancerous. They have recommended FOLFOX, which we have no problem with as most of the lit says this is standard. (Though I am obviously concerned about how he will do on it, side effects etc.) But his oncologist recommended radiation as well, 5 weeks with a continuous daily drip of 5FU at the same time. Our problem is this. His surgeon told us radiation was a bad idea, too many possibilities of side effects, permanent damage. We have concerns about side effects as well, seeing as my husband is so young. The surgeon is concerned about his quality of life. So now we have 2 camps, the surgeon saying don't do radiation and the oncologist and radiation oncologist saying do it. We are going to see another oncologist to get a second opinion. Does anyone out there have any thoughts on radiation? Should we be concerned about permanent damage? Or are we making too big a deal out of this? We want him around as long as possible for our 10 and 8 year old daughters. Thanks in advance for your posts

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    Welcome to our group that noone wants to join.

    Where is hubby getting treatments. It can be tough when you are given two different suggestions.

    I would get an opinion from a major cancer center.

    What area do they want to radiate and do they think they removed all the cancer.

    Maureen
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Hello. Welcome to the semi-colons. I agree with Maureen, if you are not at a major cancer center, ask for a second opinion from one. It more depends on the type of cells, mine (squamous cell) are VERY radio-sensitive...so the radiation did great things. I have very little residual effects, I think partly because it was down low (rectum) and partly because my rad/oncologist was excellent. He treated me for my subsequent breast cancer as well, and I have very limited disability there as well.

    Get that second opinion. Radiation DOES have it's side effects...and I was radiated at the same time as the chemo, too. WHEW! It was not a very pleasant experience, since I was already in constant pain from the location of the tumor, and the fact that I was still trying to USE this organ during the treatment!!!!

    Hugs, Kathi
  • PGLGreg
    PGLGreg Member Posts: 731
    #4
    It would be good to understand the source of the disagreement between your surgeon and your oncologists. Perhaps you could ask them. Before I started my 6 weeks of radiation, my radiation oncologist told me they have made considerable progress in radiation treatments in just the last 3 or so years. Maybe your surgeon isn't 100% up to date. (However, I haven't done any reading about long term effects of radiation treatments.)
  • KariK
    KariK Member Posts: 5
    #5
    I was dx 9/04 with colorectal cancer stage IV, this was after an ambulance ride to the hosp. which showed I had an abcessed spleen that had ruptured, I was a code 4 twice in the next 2 days. That was when they discovered the colon cancer, the surgeon removed my spleen, gave me a colostomy and told me to go home and do nothing. He gave me 4 months tops. I found a great Radiologist and Oncologist who convinced me to to at least do something. On their recomendation I did 6 weeks of radiation along with the 5FU 24/7. I can't say it didn't burn my butt a little, but nothing I couldn't tolerate and I've not had any permanent damage as of yet. I then had surgery to remove the tumors and started on FOLFOX. Not only am I still here 26 months later I'm as active as I have ever been. I can't say it has always been easy, and if some damage does show up from the radiation, it is still better than the original 4 months. By the way, I also fired the 1st surgeon. I wish you and your husband the best of luck, this is a tough battle. Be persistent and ask questions.
  • NWmom
    NWmom Member Posts: 80
    #6
    Moesimo said:

    Welcome to our group that noone wants to join.

    Where is hubby getting treatments. It can be tough when you are given two different suggestions.

    I would get an opinion from a major cancer center.

    What area do they want to radiate and do they think they removed all the cancer.

    Maureen

    Maureen, He hasn't started treatments yet supposed to start on Dec. 13th. We are in a smaller town close to Portland, OR. He will be getting his treatments in our town, but we will be going to OHSU (Oregon Health Sciences University) for our second opinion from a gastrointestinal oncologist. They want to radiate the pelvis. According to the surgeon they did remove all the cancer, but with the nodes and the mets, the oncologist says there are probably still cells and that is what they want to radiate.
    Heather
  • NWmom
    NWmom Member Posts: 80
    #7
    KathiM said:

    Hello. Welcome to the semi-colons. I agree with Maureen, if you are not at a major cancer center, ask for a second opinion from one. It more depends on the type of cells, mine (squamous cell) are VERY radio-sensitive...so the radiation did great things. I have very little residual effects, I think partly because it was down low (rectum) and partly because my rad/oncologist was excellent. He treated me for my subsequent breast cancer as well, and I have very limited disability there as well.

    Get that second opinion. Radiation DOES have it's side effects...and I was radiated at the same time as the chemo, too. WHEW! It was not a very pleasant experience, since I was already in constant pain from the location of the tumor, and the fact that I was still trying to USE this organ during the treatment!!!!

    Hugs, Kathi

    Kathi,
    Curious to hear about your experience...
    Heather
  • NWmom
    NWmom Member Posts: 80
    #8
    KariK said:

    I was dx 9/04 with colorectal cancer stage IV, this was after an ambulance ride to the hosp. which showed I had an abcessed spleen that had ruptured, I was a code 4 twice in the next 2 days. That was when they discovered the colon cancer, the surgeon removed my spleen, gave me a colostomy and told me to go home and do nothing. He gave me 4 months tops. I found a great Radiologist and Oncologist who convinced me to to at least do something. On their recomendation I did 6 weeks of radiation along with the 5FU 24/7. I can't say it didn't burn my butt a little, but nothing I couldn't tolerate and I've not had any permanent damage as of yet. I then had surgery to remove the tumors and started on FOLFOX. Not only am I still here 26 months later I'm as active as I have ever been. I can't say it has always been easy, and if some damage does show up from the radiation, it is still better than the original 4 months. By the way, I also fired the 1st surgeon. I wish you and your husband the best of luck, this is a tough battle. Be persistent and ask questions.

    Kari, Good to hear that you thought it was tolerable. And that you haven't had any long term effects as yet. Do you think it makes any difference that you had radiation before surgery? Just wondering if there is a difference between radiation before surgery or doing it after surgery which is our case. Thanks.
    Heather
  • NWmom
    NWmom Member Posts: 80
    #9
    PGLGreg said:

    It would be good to understand the source of the disagreement between your surgeon and your oncologists. Perhaps you could ask them. Before I started my 6 weeks of radiation, my radiation oncologist told me they have made considerable progress in radiation treatments in just the last 3 or so years. Maybe your surgeon isn't 100% up to date. (However, I haven't done any reading about long term effects of radiation treatments.)

    I think their opinions differ because our surgeon sees all the people that come to him with problems from radiation. Our oncologist is going off the latest flow chart which says if you have this cancer at this stage, then do this. Our surgeon thinks it needs to be more tailored to my husband, and the surgeon is worried about my husband losing bowel function, erectile function, etc. Ergo, the reason we are going to see a third party to get some insight. It's all very confusing to begin with, and especially when all of your "specialists" don't agree!
    Thanks, Heather
  • mwomack
    mwomack Member Posts: 78
    #10
    First off, radiation is the normal for rectal cancer.

    BUT, another thought is this. My husband had Stage IIIc colon cancer, that came back to pre-sacral space soon after finishing chemo (FOLFOX). They laprascopically removed the tumor, and he had 7 weeks/1day of total pelvic radiation. He had and has had no know side effects other than the standard fatigue and nausea during treatments which was controlled by Zofran. The nausea was probably from the Xeloda rather than the radiation.

    Now to my other thoughts on radiation with that valued 20/20 hindsight factored in. He finished radiation in May and the end of August his CEA was rising again. He now has 3 new pelvic masses (upper left pelvic, mid left pelvic, and peri-rectal) which they are very hesitant to consider surgery for because of the previous surgeries and the radition treatments (scar tissue). Radiation treatments pretty much rule out any future surgeries and surgery offers the best chance for a cure.

    He is due to start FOLFIRI w/Avastin on the 27th, and will get a CT scan after 4 treatments. If the chemo isn't showing some very positive results, we may go back to his surgeon (he didn't give us an absolute no) and ask him to at least look (laproscopically) and see if he thinks he can get them. He was very shocked with his last surgery because he had "no scar tissue at all" so I am hoping that the scar tissue is not too bad this time. He said the fact that he had no scar tissue is nothing he did as a surgeon - it is just the way he healed. The surgeon I don't think is as worried about the scar tissue as he is in finding all the places. Also, the peri-rectal one would probably involve a colostomy and a bag for the bladder as well.

    Even though I don't KNOW if he could have had a successful surgery had he not had the radiation treatments, it would be a better option. ALSO, honestly I believe radiation usually offers more than my husband got from it. We are so struggling and have no faith in chemo or radiation right now because neither have even given him a comfortable NED status for anytime. We have gotten a new baseline CEA after treatments and had nothing but steady increases.

    Talk to them about the doors that the radition treatments will "close" in future treatment decisions. I wish I had even though it probably wouldn't have changed things as microscopically the margins were not clear on the pre-sacral mass they removed. (It wasn't back there though).

    Good Luck,

    MA
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #11
    You have a tough decision to make. Usually radiation is given preop for rectal cancer. Was your husband obstructed? They will do the surgery first if you are obstructed. But, he already has had the surgery. They fact that they think they got it all is very good. Radiation is done to zap any micrcroscopic cells that could be lingering. I had preop chemo and radiation 3 1/2 years ago. Since then I have had 2 more abdominal surgeries. I have alot of adhesions from the radiation.

    I have had 3 surgeries and many bowel obstructions. I have had no obstructions since 8/05. I have had 11 hospitalizations total. Has this whole journey sucked, YES ----- BUT, I remain NED since my surgery on 6/24/03.

    That to me is PRICELESS and worth everything I have gone through.

    Maureen
  • CAMaura
    CAMaura Member Posts: 719 Member
    #12
    I would say a second or third opinion might be very helpful. You and your husband want to feel very positive and confident in the porcedure; talking to people in two different camps cannot be easy. The nice thing is that you have some time...Make some calls and pick a few brains. I am sure you will feel better about everything with more information. Allt he best to you - Maura
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #13
    Hello,
    I think going to OHSU for a second opinion is a really good idea.
    One question I would want the answer to is why he needs radiation AFTER surgery since they think they "got it all". Secondly, why have they chosen FOLFOX rather than FOLFIRI. Was his tissue tested? Meaning, did they determine that Oxaliplatin would work better than Camptosar on his tumor? I was Stage IV colon cancer (in the Sigmoid colon). I was given FOLFIRI which my surgeon told me had less chance of long term side effects (neuropathy). Personally, also being 36 and having been through this I would lean towards not having any more treatments than are absolutely necessary and I would want to know WHY they are necessary. I understand that the idea of chemo is to sweep up any remaining cancer cells that might be lurking in the lymphatic system, etc., but I do not understand the rationale behind the radiation. Perhaps it is different for rectal patients, but I would certainly want to know WHY.
    Best of luck, in my opinion quality of life is of the utmost importance.
    -Susan H.
  • vinny3
    vinny3 Member Posts: 928 Member
    #14
    Hi,
    Usually radiation along with 5-FU has been the usual course of treatment after surgery if radiation was not used prior to surgery, depending upon the location of the tumor. I had preop radiation and the side effects were tolerable ( the burning rear end and some fatigue). It seems they might use that and then the Folfox. However I would recommend getting another oncology opinion. I would tend to follow the oncologist's recommendations over the surgeon's but it is a good idea to ask them why the different recommendations. My surgeon made some recommendations which I think were too minimal and I followed my oncologist's recommendations. It is a tough decision.

    ****
  • nanuk
    nanuk Member Posts: 1,358 Member
    #15
    as you can see, you get more than a second opinion here at CSN..my story is somewhat similar to Karik's; mesorectal excision with colostomy Oct 2000. Tumor has broken through the wall, but nodes were clean, and surgeon-(teaches the procedure at a major hosp)said adjuvant chemo/radiation not needed..then came back the next day and did a 180, saying both chemo & rads were a good idea-(think someone told him to CYA..)
    which I did. I was clean throughout for 3 years, then came up with stage IV - mets to lungs. But, nothing has recurred in the pelvic region. I am nearly twice your hubby's age, and have had some
    problems post treatment, but can't say for sure whether they can be attributed to surgery, chemo or radiation. If I had know Emily at that time, I might have opted for alternatives-juicing..
    What nobody knows is how many of those microscopic buggars are still lurking in there somewhere..bottom line; his decision, his consequences. I have to say that the ONLY time I have been sick has been when I was receiving treatment. Bud
  • NWmom
    NWmom Member Posts: 80
    #16
    Moesimo said:

    You have a tough decision to make. Usually radiation is given preop for rectal cancer. Was your husband obstructed? They will do the surgery first if you are obstructed. But, he already has had the surgery. They fact that they think they got it all is very good. Radiation is done to zap any micrcroscopic cells that could be lingering. I had preop chemo and radiation 3 1/2 years ago. Since then I have had 2 more abdominal surgeries. I have alot of adhesions from the radiation.

    I have had 3 surgeries and many bowel obstructions. I have had no obstructions since 8/05. I have had 11 hospitalizations total. Has this whole journey sucked, YES ----- BUT, I remain NED since my surgery on 6/24/03.

    That to me is PRICELESS and worth everything I have gone through.

    Maureen

    Thanks Maureen, He wasn't obstructed. The surgeon said he didin't like the idea of doing chemo/radiation first. He jsut wanted to get it out. Adhesions? How bad?
  • NWmom
    NWmom Member Posts: 80
    #17
    shmurciakova said:

    Hello,
    I think going to OHSU for a second opinion is a really good idea.
    One question I would want the answer to is why he needs radiation AFTER surgery since they think they "got it all". Secondly, why have they chosen FOLFOX rather than FOLFIRI. Was his tissue tested? Meaning, did they determine that Oxaliplatin would work better than Camptosar on his tumor? I was Stage IV colon cancer (in the Sigmoid colon). I was given FOLFIRI which my surgeon told me had less chance of long term side effects (neuropathy). Personally, also being 36 and having been through this I would lean towards not having any more treatments than are absolutely necessary and I would want to know WHY they are necessary. I understand that the idea of chemo is to sweep up any remaining cancer cells that might be lurking in the lymphatic system, etc., but I do not understand the rationale behind the radiation. Perhaps it is different for rectal patients, but I would certainly want to know WHY.
    Best of luck, in my opinion quality of life is of the utmost importance.
    -Susan H.

    We weren't told why they chose FOLFOX over FOLFIRI. We know they are testing his tissue for HNPCC, but don't know if that would affect the chemo choice. We are really going to drill our 2nd opinion, especially since he specializes in colorectal cancer.

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