ChemoRadiation and No Surgery?

charcurley
charcurley Member Posts: 9
edited March 2014 in Colorectal Cancer #1
Hello. My husband was diagnosed with Stage 3 rectal cancer. He just finished 6 weeks of radiation (twice a day) and Xeloda daily during radiation days about a month ago. He went for a follow up PetScan the beginning of the week. The first PetScan showed an SUV uptake of 19.9 and now it shows 3. The radiologist told us at the beginning that he was not a candidate for surgery because of his portal hypertension (he just turned 56) and said this was the overall result from the "Tumor Board" meeting. We were upset about this but the oncologist and surgeon seem to think surgery was an option (talking to them initially after the radiologist telling us no surgery)? We just had the follow up with the radiologist who insists that there will be no surgery he proceeded to tell us that it is 50% mortality for him if there is surgery. Also said that the amount of radiation that he was given was to be the only treatment (followed by 6 months of chemo) and because of the amount of radiation that too would affect surgery. We are tremendously happy about the results so far but worried about not having surgery. The Radiologist stated again that the "Tumor Board" when they met had decided this. We received a letter (by the way we are at the VA for oncology and surgery but another facility for the radiology) from the surgeon for a meeting in August as well as another appointment with the oncologist to start the chemo. Has anyone not had surgery? This is low rectal cancer and we were made to feel as if the tumor is if not completely gone definitely going to be gone shortly with the radiation still working and follow up chemo? Next follow up with the radiologist is in 4 more months. He insisted that if anyone mentions surgery we are to get in touch with him immediately. Any thoughts on all this would be greatly appreciated we are, needless to say, confused.

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    I would get a second opinion at a major cancer center. Just do a google search for top cancer centers in US. Pick the one closest to you.

    I thought that stage 3 is curable only if the tumor is removed. I am only a stage 3 rectal cancer survivor and not a doctor.

    Let us know what happens.

    Maureen
  • Patrusha
    Patrusha Member Posts: 487
    #3
    Something is backwards here. The radioloogist works for YOU. If you have a surgeon and oncologist saying surgery is an option, and you want to do it, then consider it an option. You have to be your own advocate. It is up to you to make the decisions, not the radiologist (who, by the way is neither a surgeon or a cancer expert!). Just make sure the surgeon and oncologist are aware of your husband's entire medical history and are giving you their best advice based on all of the facts... ask them to confer with your radiologist if you want to keep him in the loop.

    If you're not getting satisfactory answers, keep asking. You can also get a second opinion from another radiologist.
  • charcurley
    charcurley Member Posts: 9
    #4
    Patrusha said:

    Something is backwards here. The radioloogist works for YOU. If you have a surgeon and oncologist saying surgery is an option, and you want to do it, then consider it an option. You have to be your own advocate. It is up to you to make the decisions, not the radiologist (who, by the way is neither a surgeon or a cancer expert!). Just make sure the surgeon and oncologist are aware of your husband's entire medical history and are giving you their best advice based on all of the facts... ask them to confer with your radiologist if you want to keep him in the loop.

    If you're not getting satisfactory answers, keep asking. You can also get a second opinion from another radiologist.

    University Hospital in Baltimore is a major cancer and research center. He was given radiation on the trilogy machine which we were told there are not many in the US and latest and greatest in technology. Anyway I agree we should get a second opinion from a radiologist. We will meet with the surgeon and oncologist and see what their thoughts are after the results and treatment. I really appreciate all the feedback please keep 'em coming. I would love to find someone who did not have surgery. Regards, C
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #5
    charcurley said:

    University Hospital in Baltimore is a major cancer and research center. He was given radiation on the trilogy machine which we were told there are not many in the US and latest and greatest in technology. Anyway I agree we should get a second opinion from a radiologist. We will meet with the surgeon and oncologist and see what their thoughts are after the results and treatment. I really appreciate all the feedback please keep 'em coming. I would love to find someone who did not have surgery. Regards, C

    After I finished my radiation treatments, I was never seen by the radiation doctor again. You need a second opinion from another oncology surgeon and an oncologist.
  • Patrusha
    Patrusha Member Posts: 487
    #6
    charcurley said:

    University Hospital in Baltimore is a major cancer and research center. He was given radiation on the trilogy machine which we were told there are not many in the US and latest and greatest in technology. Anyway I agree we should get a second opinion from a radiologist. We will meet with the surgeon and oncologist and see what their thoughts are after the results and treatment. I really appreciate all the feedback please keep 'em coming. I would love to find someone who did not have surgery. Regards, C

    I am being treated at the University of Michigan, also a large teaching and research hospital. That alone makes me suspect and I am always questioning if they are offering treatment based on my best outcome or based on their latest study. While I value research, I try to keep my eyes open to make sure that anything they propose will not be aimed more at their research than my cure.
  • charcurley
    charcurley Member Posts: 9
    #7
    Patrusha said:

    I am being treated at the University of Michigan, also a large teaching and research hospital. That alone makes me suspect and I am always questioning if they are offering treatment based on my best outcome or based on their latest study. While I value research, I try to keep my eyes open to make sure that anything they propose will not be aimed more at their research than my cure.

    That's a good point about the teaching and research and that is certainly right, you don't know. In 2 weeks we meet with both the oncologist and surgeon and we will try to, if possible, get them in the same room to go over all of this.
  • scouty
    scouty Member Posts: 1,965 Member
    #8
    I concur about getting a second opinion. The horrid survival rate of the surgery would have me avoiding it too, but I would have to have it confirmed at a comprehension cancer center (the best and certified cancer treatment clinics in the US). I transferred to one right away way back when and I so happy I did. I accept the longer drive because I am still alive and am not supposed to be.

    Lisa P.
  • charcurley
    charcurley Member Posts: 9
    #9
    scouty said:

    I concur about getting a second opinion. The horrid survival rate of the surgery would have me avoiding it too, but I would have to have it confirmed at a comprehension cancer center (the best and certified cancer treatment clinics in the US). I transferred to one right away way back when and I so happy I did. I accept the longer drive because I am still alive and am not supposed to be.

    Lisa P.

    In Baltimore University of Maryland is one of the top 3. But we do have Johns Hopkins I will try to see if we can get in there for a 2nd opinion.
  • charcurley
    charcurley Member Posts: 9
    #10
    scouty said:

    I concur about getting a second opinion. The horrid survival rate of the surgery would have me avoiding it too, but I would have to have it confirmed at a comprehension cancer center (the best and certified cancer treatment clinics in the US). I transferred to one right away way back when and I so happy I did. I accept the longer drive because I am still alive and am not supposed to be.

    Lisa P.

    I just filled out a new patient app at Sloan-Kettering in NYC and phoned Hopkins but have to wait until Monday for their appointment bookings. Feeling better about taking a bit more control already.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #11
    I agree with Patrusha.
  • Patrusha
    Patrusha Member Posts: 487
    #12
    charcurley said:

    I just filled out a new patient app at Sloan-Kettering in NYC and phoned Hopkins but have to wait until Monday for their appointment bookings. Feeling better about taking a bit more control already.

    "Feeling better about taking a bit more control already."

    Good for you!! The beast can be so threatening, but never let it (or your doctors, or friends, or relatives) forget that it is you that calls the shots! Hang in there.
  • vinny3
    vinny3 Member Posts: 928 Member
    #13
    One more opinion, so far it looks like you are getting good advice. The radiologist is not one to determine whether or not surgery is done. The most curative treatment for rectal cancer is surgery. If your husband has a complicating factor for surgery, like the portal hypertension, then I would talk to several surgeons about the risk. Getting several opinions is definitely worth it but I would get them from the oncologists and surgeons and not a radiologist. Low rectal cancer has a higher rate of recurrance (that's what I had) and your husband will likely need an AP resection like I had. I initially had chemoradiation and then just a local excision. Feel free to email if any questions about the surgery.
    ****
  • spongebob
    spongebob Member Posts: 2,565 Member
    #14
    charcurley -

    Patrusha is sounding my mantra! The docs work for you! Also this tumor board thing... If your oncologist and surgeon were with the same practice as your radiologist, I could see it, but I have to wonder if the VA docs are part of this tumor board and are giving their input. Of course the radiologist is going to think that his slice of the pie is the best thing going - that's s/he believe in radiology; that's probably why s/he is in the field. It's like the surgeon who doesn't see a need for post-op chemo - the SURGEON cured the cancer. Talk to your oncologist and get his or her read on the situation. The onc is in the best position to look at the whole picture and make a recommendtion. There are a number of facilities in the Balto-DC area where you can get a second opinion if you are not liking the first opinion. See out that second opinion!

    - SpongeBob
  • charcurley
    charcurley Member Posts: 9
    #15
    spongebob said:

    charcurley -

    Patrusha is sounding my mantra! The docs work for you! Also this tumor board thing... If your oncologist and surgeon were with the same practice as your radiologist, I could see it, but I have to wonder if the VA docs are part of this tumor board and are giving their input. Of course the radiologist is going to think that his slice of the pie is the best thing going - that's s/he believe in radiology; that's probably why s/he is in the field. It's like the surgeon who doesn't see a need for post-op chemo - the SURGEON cured the cancer. Talk to your oncologist and get his or her read on the situation. The onc is in the best position to look at the whole picture and make a recommendtion. There are a number of facilities in the Balto-DC area where you can get a second opinion if you are not liking the first opinion. See out that second opinion!

    - SpongeBob

    SpongeBob,
    The VA Doctors were part of the tumor board meeting. When the radiologist first said this thing about "surgery is not an option" it was previous to treatment. We went immediately to the Nurse Practioner and Oncologists at the VA, that we had met, asking if this is true. They seemed to not get the same out of the tumor board meeting. They told us that it would be a risky surgery but still an option in the long run. I'd love to get all 3 of them in a room (surgeon, oncologist and radiologist).
  • spongebob
    spongebob Member Posts: 2,565 Member
    #16
    charcurley said:

    SpongeBob,
    The VA Doctors were part of the tumor board meeting. When the radiologist first said this thing about "surgery is not an option" it was previous to treatment. We went immediately to the Nurse Practioner and Oncologists at the VA, that we had met, asking if this is true. They seemed to not get the same out of the tumor board meeting. They told us that it would be a risky surgery but still an option in the long run. I'd love to get all 3 of them in a room (surgeon, oncologist and radiologist).

    Sounds to me like that is EXACTLY what you need to do!
  • charcurley
    charcurley Member Posts: 9
    #17
    Richard is up for the 2nd consultation but is of the mindset of let's give this a try. No Surgery start on chemo follow up and if there is a reoccurence deal with the surgery issue then. I guess cross that bridge when you come to it. What are your thoughts on this?
  • spongebob
    spongebob Member Posts: 2,565 Member
    #18
    charcurley said:

    Richard is up for the 2nd consultation but is of the mindset of let's give this a try. No Surgery start on chemo follow up and if there is a reoccurence deal with the surgery issue then. I guess cross that bridge when you come to it. What are your thoughts on this?

    Is it possible for him to address the hypertension issue in the mean time to perhaps make himself a better candidate for future surgery? Or is the hypertension issue something than cannot be addressed?
  • charcurley
    charcurley Member Posts: 9
    #19
    spongebob said:

    Is it possible for him to address the hypertension issue in the mean time to perhaps make himself a better candidate for future surgery? Or is the hypertension issue something than cannot be addressed?

    You know that is what I thought. Not sure about it for him particularly but I see there are stints that are put in place for portal hypertension. In the late 1980's he had esophageal varices and was successfully treated with sclerotherapy and endoscopic therapy (using rubber bands) and no problems since. Another avenue to venture down.
  • vinny3
    vinny3 Member Posts: 928 Member
    #20
    charcurley said:

    You know that is what I thought. Not sure about it for him particularly but I see there are stints that are put in place for portal hypertension. In the late 1980's he had esophageal varices and was successfully treated with sclerotherapy and endoscopic therapy (using rubber bands) and no problems since. Another avenue to venture down.

    How are his liver function tests now, the treatment was yrs ago, and most importantly his bleeding times? If he is able to clot his blood normally he may be a candidate for surgery. You may want to have a gastroenterologist evaluate that. They are not surgeons so don't have a stake in the pie of doing surgery or not but should be able to give some good advice. As in my case even what looks like a 100% response to the chemoradiation is not usually and the rate of recurrance is high.
    ****
  • charcurley
    charcurley Member Posts: 9
    #21
    vinny3 said:

    How are his liver function tests now, the treatment was yrs ago, and most importantly his bleeding times? If he is able to clot his blood normally he may be a candidate for surgery. You may want to have a gastroenterologist evaluate that. They are not surgeons so don't have a stake in the pie of doing surgery or not but should be able to give some good advice. As in my case even what looks like a 100% response to the chemoradiation is not usually and the rate of recurrance is high.
    ****

    The cause of his portal hypertension is a diagnosis of Hepatitis C. So the liver function tests I would assume are not too good. He has never had any symptoms of hepatitis C. He found out when in the Hospital in 1990 for the esophageal varices. He has been monitored thru-out the last 15 years for his Hepatitis. If they treat the Hepatitis C maybe that will help reduce the pressure of portal hypertension. Now they are talking of treatment for the Hepatitis after the chemo is completed. He has been on a list at the VA but now I guess he has moved to the top. I don't know but he certainly has a lot on his plate! His platelets have been low but not too low, they went down during treatment but now are about 90 (which I realize is low but not too terribly low). Overall he is back to his normal self, very active and not run down too often. We are leaving the country in December for 6 weeks and looking forward to it and not letting any of this slow down our plans/jobs or lives. By the way Sloan-Kettering phoned today and he will be able to see a surgeon there. We will call after we meet with our surgeon and oncologist for a consultation. We are pleased with that outcome and that came directly from the advice here on this forum.

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