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Dr. says no colonoscopy needed for Stage IV's ????

LivinginNH
LivinginNH Member Posts: 1,456
edited March 2014 in Colorectal Cancer #1
Hi All,

We need your opinions on this one... Rick and I went to a new doctor yesterday, and after we asked her if Rick should have a colonoscopy since it's been a year this month since diagnosis, she told us, "No, we don't give colonscopies to Stage IV patients with metastases.". Huh? Am I mistaken in the belief that if there's a tumor in the colon that it should be removed?? Rick had HIPEC in November, but there was no visible cancer after the operation. We have a Pet/CT scheduled for next week, so we're praying for a clean scan. But no colonoscopies??? She also said that she wouldn't have recommended the HIPEC surgery since the data doesn't show that it's worse or better than chemo, but then said in the same sentence that it was good for him to have it since he's young and in generally good health. Again, HUH??? It seems like she's talking out of both sides of her mouth. We're thinking of making yet another appointment with another doctor since this one is confusing us. Any comments???

Thanks everyone, Cynthia

Comments

  • pepebcn
    pepebcn Member Posts: 6,331
    I have been told something similar as seems reoccurrence on
    the primary cancer is not very common , despite that I told my doctor I'd like to have one 6 months after surgery and he did it.
    Must be true as they are not saving any money with me in tests , I got 10 scans and 4 Pet in 18 months but just 1 colonoscopy in between!.
    Hugs Cynthia!
  • Nana b
    Nana b Member Posts: 3,030
    pepebcn said:

    I have been told something similar as seems reoccurrence on
    the primary cancer is not very common , despite that I told my doctor I'd like to have one 6 months after surgery and he did it.
    Must be true as they are not saving any money with me in tests , I got 10 scans and 4 Pet in 18 months but just 1 colonoscopy in between!.
    Hugs Cynthia!

    second opinion
    If it doesn't feel right, chances are that it isn't. I would ask for a second opinion. I got one at a year and now another at the second year. after this one, I will go to every 3 years.

    pepe, those are a lot of scans! I think I have had no more then 6 in the past 18 months.
  • lisa42
    lisa42 Member Posts: 3,625
    time for another opinion
    Hi Cynthia,

    My first thought is that anytime you are questioning what your doctor is saying that you need to go get another opinion- maybe even two other opinions!
    Try to get into an NCI cancer center, or at least a major cancer center with a doctor that is not in any way associated with your current doctor (otherwise you might just get a rehash of what she is saying).
    Insurance, even if it's an HMO, has to let you go get another opinion, although they may control where you can get that opinion from.
    It's been 3-1/2 yrs since my stage IV diagnosis & I've had just one colonoscopy since my original one.
    I see no sense in your onc saying stage IV's don't get colonoscopies. Maybe it isn't as neccessary if your husband is getting regular scans, but colonoscopies can see things scans can't, such as adhesions, diverticula pockets, and small polyps (which could then be snipped off at the same time so they don't grow into tumors).
    Sometimes oncs put off colonoscopies because the patient is in active chemo treatment and depending upon the chemo, chemo might have to be temporarily stopped to have the colonoscopy. I know for me, I stayed on the main chemo, but had to stop taking Avastin 6 wks before and 6 wks after the colonoscopy, so I lost 12 weeks of taking Avastin, which was a concern for me at the time. It is the reason why we're not scheduling another colonoscopy now (it's been a year and 2 months since my last one).
    Although it's not that common, I am someone who has had a recurrence of my primary rectal tumor. Since it is very low, we are able to keep an eye on it through a rectal scope exam., and it currently isn't something that is going to be removed. We talked about me having surgery on it, but decided against that as it's been a 1/2 cm for awhile and the surgery might actually prove to make more problems than what I'm currently experiencing & since it isn't large enough to be a blockage, we're just leaving and watching it. I'm on chemo (mainly to address liver and lung tumors) & they're thinking that is the best thing for the time being.

    Best wishes, but definitely try and talk to another onc if you're not comfortable with or understanding what this one is saying.

    Lisa
  • chicoturner
    chicoturner Member Posts: 282
    Hi, Cynthia! My Dr's said I
    Hi, Cynthia! My Dr's said I should have one and I did it about 6 months after my surgery. I think I would get a more positive Doctor!! I hate it that we works so hard to be healthy and cancer free only to have the thought added by others that we are stage four and hopeless. Pooh on them all! I am confused enough when I have talked with the Doc's and it is not because they say two different things. You need a doc that is clear!! Best to you. Jean
  • pepebcn
    pepebcn Member Posts: 6,331
    Nana b said:

    second opinion
    If it doesn't feel right, chances are that it isn't. I would ask for a second opinion. I got one at a year and now another at the second year. after this one, I will go to every 3 years.

    pepe, those are a lot of scans! I think I have had no more then 6 in the past 18 months.

    Yep but in those 18 moths had a reoccurrence and
    radiotherapy so the did 2 just for radiotherapy!
  • John23
    John23 Member Posts: 2,122
    Cynthia -

    Re:
    "We're thinking of making yet another appointment with another
    doctor since this one is confusing us. Any comments??? "


    Her opinion actually isn't a bad one, but if you feel "confused",
    or otherwise unsure your trust in the physician, you -have- to
    find another one.

    But... you should question every opinion, including the ones from
    physicians you adore. Physicians are human, and make mistakes
    just as every human does. When you're dealing with a life-changing
    condition, why allow one opinion to rule your destiny? It just doesn't
    make sense to do that, right? So you need other opinions, and
    you oughta' get them as soon as possible.

    Some light reading?
    The Oncologist, Vol. 14, No. 6

    Colonoscopy is recommended 1 year after completion of treatment and should be repeated annually if new polyps are noted or every 3 years if not.

    Get another opinion!

    Best of health!

    John
  • pepebcn
    pepebcn Member Posts: 6,331

    Hi, Cynthia! My Dr's said I
    Hi, Cynthia! My Dr's said I should have one and I did it about 6 months after my surgery. I think I would get a more positive Doctor!! I hate it that we works so hard to be healthy and cancer free only to have the thought added by others that we are stage four and hopeless. Pooh on them all! I am confused enough when I have talked with the Doc's and it is not because they say two different things. You need a doc that is clear!! Best to you. Jean

    I don't think is a question of hopeless , but seems they are
    following an standard protocol , Look at the Internet it seems is a quite common procedure not only in S4 but in all stages! After surgery the
    standards suggest colonoscopy every 2 years or more.Despite this you can insist as l did and I'm sure they will do it! Also l must say that my doctors are very hopeful so I think not a question of hope but following certain standards.They follow very close labs to see if any unforseen.
    Hugs.
  • pepebcn
    pepebcn Member Posts: 6,331
    John23 said:

    Cynthia -

    Re:
    "We're thinking of making yet another appointment with another
    doctor since this one is confusing us. Any comments??? "


    Her opinion actually isn't a bad one, but if you feel "confused",
    or otherwise unsure your trust in the physician, you -have- to
    find another one.

    But... you should question every opinion, including the ones from
    physicians you adore. Physicians are human, and make mistakes
    just as every human does. When you're dealing with a life-changing
    condition, why allow one opinion to rule your destiny? It just doesn't
    make sense to do that, right? So you need other opinions, and
    you oughta' get them as soon as possible.

    Some light reading?
    The Oncologist, Vol. 14, No. 6

    Colonoscopy is recommended 1 year after completion of treatment and should be repeated annually if new polyps are noted or every 3 years if not.

    Get another opinion!

    Best of health!

    John

    That's exactly what my doctor said John !
    Hugs!
  • pepebcn
    pepebcn Member Posts: 6,331
    pepebcn said:

    That's exactly what my doctor said John !
    Hugs!

    Raquel !
    18 months , control every 2 months = 9 scans + 1 to locate the radiation points =10scans!.
    Hugs!
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Thanks everyone. Another

    Thanks everyone. Another concern is that this particular doctor is from Dana Farber - which has all of the latest trials! So, if we choose another doctor from D.F., we'll probably get the same line as from this other one. Now what? I guess I'm getting a little scared since it just seems that they're simply giving up on him. Well, I suppose we'll just have to go to yet another doctor since I want to make sure that we do everything we can to beat this beast down. Thanks again for all of your comments, they're so very much appreciated! Hugs, and best wishes for better health for everyone in the New Year.

    Luv, Cynthia
  • pepebcn
    pepebcn Member Posts: 6,331

    Thanks everyone. Another

    Thanks everyone. Another concern is that this particular doctor is from Dana Farber - which has all of the latest trials! So, if we choose another doctor from D.F., we'll probably get the same line as from this other one. Now what? I guess I'm getting a little scared since it just seems that they're simply giving up on him. Well, I suppose we'll just have to go to yet another doctor since I want to make sure that we do everything we can to beat this beast down. Thanks again for all of your comments, they're so very much appreciated! Hugs, and best wishes for better health for everyone in the New Year.

    Luv, Cynthia

    Cynthia sometimes we think docs are giving up but not
    just think in the amount of tests ,scans ,pet or labs they prescribed to us ! a colonoscopy is the cheapest of all that no sense they don't do it if you would need it!.
    Cheer up!.
    Hugs!
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    My colonoscopies
    were 10 months after surgery and then 1 year apart. So I have had 3 since dx 12/08. Gastro plans one each year for now and so far no problems. I asked the onc his opinion (different practice) and he was good with 1 year and then 3 years. But since my cancer showed up even after having had probably 4 to 5 colonoscopies because I was being watched because polyps were present and had been diagnosed as negative, I just don't feel secure that something will not be missed or some error occur. Probably paranoid, but at this point rather safe than sorry. Personal decision, I guess. Pat chemo brain-2 since dx 12/08
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Colonoscopies for Stage IV
    I can only tell you my experience............

    I was diagnosed Stage IV in 5/2005. The scope couldn't get all the way through because of the sigmoid tumor. Had surgery i 6/2005 and another scope in 11/05 to get all the way through (it was fine). At that time my GI doc said we could go 2 years before the next scope. My oncologist said "no way" - she wanted to know if the "natural history of my disease" involved frequent polyp formation. So a year later (2006) we did another scope. Negative. Then both my onc and GI doc agreed to wait 3 years - had one Dec 2009 and now they say I can go 5 years.

    It really depends upon your situation.

    Betsy
    diagnosed Stage IV 5/05
    sigmoid colectomy 6/05
    6 cycles Xeloda/oxaliplatin/Avastin
    Lung recurrence 11/08
    Wedge resection 4/09
    6 cycles of Xeloda and Avastin
    Continuing on Avastin only (19 months so far!)
  • geotina
    geotina Member Posts: 2,111
    Cynthia:
    Regarding the colonoscopy and Stage IV, while you are in active treatment they generally do not do a colonoscopy because they would need to stop treatment to do it and that is ill advised without good reason. That is the explanation we were given when I questioned our oncologist since George had his colectomy before starting treatment and his cancer had already metastized. Now if he gets clear scans and you want a colonoscopy, question the doc about it again.

    Take care - Tina
  • scouty
    scouty Member Posts: 1,965
    No big deal in my opinion
    You have the scans next week so concentrate on that first. If everything looks good then concentrate on his healing up and getting stronger. The thinking here is if there isn't a blockage to deal with, treat the mets first. Remember surgery takes a great deal out of someone and slows down healing and the ability to fight infections for weeks. You want his body fighting cancer 24X7 right now.

    I agree with everyone else about changing docs if you don't feel confortable but I'd give her a second chance thru the scans if it was me. I've been with my oncologist 6 plus years now and trust me when I say we have had a few tough conversations. I'm thrilled to have gone thru some of the tough stuff that we did to have the relationship and more importantly the understanding we have today.

    Lisa P.
  • John23
    John23 Member Posts: 2,122

    Thanks everyone. Another

    Thanks everyone. Another concern is that this particular doctor is from Dana Farber - which has all of the latest trials! So, if we choose another doctor from D.F., we'll probably get the same line as from this other one. Now what? I guess I'm getting a little scared since it just seems that they're simply giving up on him. Well, I suppose we'll just have to go to yet another doctor since I want to make sure that we do everything we can to beat this beast down. Thanks again for all of your comments, they're so very much appreciated! Hugs, and best wishes for better health for everyone in the New Year.

    Luv, Cynthia

    Cynthia -

    Re:
    "Dana Farber - which has all of the latest trials!"

    Why all the interest in "trials"? A trial might be fine if/when all
    other possible options have run out; but for your fight right now?

    If you're in New Hampshire, it's not too long of a drive to the
    UMass Cancer Center in Worcester, Ma.

    It's certainly worth going, even if only for a second opinion.

    I would hold off with "trials", until there's nothing else to turn to.

    (and there's plenty of things to turn to)

    Good health!

    John
  • CherylHutch
    CherylHutch Member Posts: 1,375
    John23 said:

    Cynthia -

    Re:
    "Dana Farber - which has all of the latest trials!"

    Why all the interest in "trials"? A trial might be fine if/when all
    other possible options have run out; but for your fight right now?

    If you're in New Hampshire, it's not too long of a drive to the
    UMass Cancer Center in Worcester, Ma.

    It's certainly worth going, even if only for a second opinion.

    I would hold off with "trials", until there's nothing else to turn to.

    (and there's plenty of things to turn to)

    Good health!

    John

    Trials as last resort
    Cynthia,

    I agree with John on this one. I think part of the confusion we all get caught up on is... there has to be SOMETHING out there for us and let's get in on as many trials as we can because one of them might be the magic key. But thinking that was just goes to show we don't totally understand how all of this works ;)

    When my onc told me that the Xeloda had stopped working for me this last three months, I panicked thinking, "OMG! Chemo has stopped working for me!" and the first thing I asked her was, "Do you think there are any trials I should be trying?" She looked at me quite puzzled and said, "No, I don't think so... besides, you wouldn't be eligible for them anyways." HELLO?? Not eligible?? How could I not be eligible if chemo has stopped working for me?? It's amazing how our minds jump from thought process to thought process without actually having done our research ... fueled by panic ;)

    The reason I'm not eligible is, I have only been on one kind of chemo treatment, FOLFOX... and then we tried Xeloda since June, which is just a milder version of the 5FU of FOLFOX. I've got a long ways to go with trying out various chemo treatments, or chemo + RFA or a variety of things yet, before we'd EVER even be considered for any trials ;)

    And I see this as a very good thing! I'm very pleased that I'm not eligible now that I understand it better :)

    Cheryl
  • LivinginNH
    LivinginNH Member Posts: 1,456
    scouty said:

    No big deal in my opinion
    You have the scans next week so concentrate on that first. If everything looks good then concentrate on his healing up and getting stronger. The thinking here is if there isn't a blockage to deal with, treat the mets first. Remember surgery takes a great deal out of someone and slows down healing and the ability to fight infections for weeks. You want his body fighting cancer 24X7 right now.

    I agree with everyone else about changing docs if you don't feel confortable but I'd give her a second chance thru the scans if it was me. I've been with my oncologist 6 plus years now and trust me when I say we have had a few tough conversations. I'm thrilled to have gone thru some of the tough stuff that we did to have the relationship and more importantly the understanding we have today.

    Lisa P.

    Hi all,
    You're all right,


    Hi all,

    You're all right, we should just take things one at a time and not think about trials, etc., at this point. After the scans next week the doctor wants to put Rick on 5FU + Avastin. But the reason i mentioned the trials is that the onc. stated that if Avastin stopped working the only next step would be trials. So maybe we're getting ahead of ourselves, but we just want a "game plan" up front so that we can kind of prepare, just in case. Rick is always saying that we'll take things, "one day at a time". It's hard sometimes... Anyway, thank you all for your kind postings, it's so wonderful to have such caring folks out here. And Happy New Year everyone! Luv, Cynthia
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Hi all,
    You're all right,


    Hi all,

    You're all right, we should just take things one at a time and not think about trials, etc., at this point. After the scans next week the doctor wants to put Rick on 5FU + Avastin. But the reason i mentioned the trials is that the onc. stated that if Avastin stopped working the only next step would be trials. So maybe we're getting ahead of ourselves, but we just want a "game plan" up front so that we can kind of prepare, just in case. Rick is always saying that we'll take things, "one day at a time". It's hard sometimes... Anyway, thank you all for your kind postings, it's so wonderful to have such caring folks out here. And Happy New Year everyone! Luv, Cynthia

    one day at a time but one minute at a time
    Cythia,

    Yours was a really interesting question. I learn so much from reading everyone detailed answers. We are a really caring and wise group. The more I read, I realise how much most of us have or will have to go through. This board gets us focused on helping others with what we have learned the hard way.

    So I did this great retreat for a week and they said simply the biggest thing to beating
    cancer and having a great life is finding peace. Have a read of the book "Quest For Life" by Petria King. It really focus's on the living in the now concept.

    Pete
  • Lisa_R
    Lisa_R Member Posts: 59

    one day at a time but one minute at a time
    Cythia,

    Yours was a really interesting question. I learn so much from reading everyone detailed answers. We are a really caring and wise group. The more I read, I realise how much most of us have or will have to go through. This board gets us focused on helping others with what we have learned the hard way.

    So I did this great retreat for a week and they said simply the biggest thing to beating
    cancer and having a great life is finding peace. Have a read of the book "Quest For Life" by Petria King. It really focus's on the living in the now concept.

    Pete

    My oncol said the same
    My oncol said the same thing.. after my initial one .. I didn't have a scope for 3 yrs.. with all the scans & chemotherapy he said he knew what my colon.looked like.. just had a clean scope in aug & officially in remission since feb 23 2010.. by the way I am st 4 w liver metsdx in june 07.. hope things go well for u & if.ur not comfortable with a dr.. change him.. that's why there is more than.one dr..
    Smiles
    Lisa
  • Bear23
    Bear23 Member Posts: 84

    Hi all,
    You're all right,


    Hi all,

    You're all right, we should just take things one at a time and not think about trials, etc., at this point. After the scans next week the doctor wants to put Rick on 5FU + Avastin. But the reason i mentioned the trials is that the onc. stated that if Avastin stopped working the only next step would be trials. So maybe we're getting ahead of ourselves, but we just want a "game plan" up front so that we can kind of prepare, just in case. Rick is always saying that we'll take things, "one day at a time". It's hard sometimes... Anyway, thank you all for your kind postings, it's so wonderful to have such caring folks out here. And Happy New Year everyone! Luv, Cynthia

    Chiming in
    Cynthia,
    Iam a Stage 4 as of last December. I have mets to the lungs. Previously did chemo/rad, surgery and the FOLFOX. I had a few other things go on between ending folfox and getting mets. One of them being a colonoscopy. It was a year after surgery. I was told 3 years for the next one. I said "Wait, I can't be on the three year plan" but that's what's up. Since mets in Dec 09, I went on 5fu and avastin and when that didn't work, I was kras tested and was able to go on Vectibix and Irinotecan. I had good results with that and am just on Vectibix now with a scan in another month. I have scans every 3-6months.

    It's hard not knowing the game plan but cancer is like that and you have to be flexible. See what the scans say next and then plan from there to the next step. You are treating this like a chronic disease. It's hard not being in control.

    I'm not sure why you would only have trials left. Has Rick been kras tested? If not he should be. I, too, went to Dana Farber. I did not like the doctor I met so I stayed in Portland with Mercy Hospital. Have you tried the Maine Med Group? Where were you going before the DF visit?

    Well, good luck to you both.
    Valerie
  • LivinginNH
    LivinginNH Member Posts: 1,456
    Bear23 said:

    Chiming in
    Cynthia,
    Iam a Stage 4 as of last December. I have mets to the lungs. Previously did chemo/rad, surgery and the FOLFOX. I had a few other things go on between ending folfox and getting mets. One of them being a colonoscopy. It was a year after surgery. I was told 3 years for the next one. I said "Wait, I can't be on the three year plan" but that's what's up. Since mets in Dec 09, I went on 5fu and avastin and when that didn't work, I was kras tested and was able to go on Vectibix and Irinotecan. I had good results with that and am just on Vectibix now with a scan in another month. I have scans every 3-6months.

    It's hard not knowing the game plan but cancer is like that and you have to be flexible. See what the scans say next and then plan from there to the next step. You are treating this like a chronic disease. It's hard not being in control.

    I'm not sure why you would only have trials left. Has Rick been kras tested? If not he should be. I, too, went to Dana Farber. I did not like the doctor I met so I stayed in Portland with Mercy Hospital. Have you tried the Maine Med Group? Where were you going before the DF visit?

    Well, good luck to you both.
    Valerie

    Hi Valerie,
    The doctor told


    Hi Valerie,

    The doctor told him last week that since he was a Kras mutant, the only drugs available now are 5FU and Avastin. (He'll start the 6 month treatment in a couple of weeks.) So, if those don't work, it appears we're then at the trial level. Our first onc. was at MGH, but we wanted another opinion since she didn't seem aggressive enough with treatment. So, after we opted for HIPEC, we found a new onc. at Dana Farber, but this one is quite young, so I don't feel that comfortable with her experience level, not to mention that her statements to us were a bit confusing. In any case, we're praying for clear scans on Wednesday... Best wishes, Cynthia
  • pepebcn
    pepebcn Member Posts: 6,331

    Hi Valerie,
    The doctor told


    Hi Valerie,

    The doctor told him last week that since he was a Kras mutant, the only drugs available now are 5FU and Avastin. (He'll start the 6 month treatment in a couple of weeks.) So, if those don't work, it appears we're then at the trial level. Our first onc. was at MGH, but we wanted another opinion since she didn't seem aggressive enough with treatment. So, after we opted for HIPEC, we found a new onc. at Dana Farber, but this one is quite young, so I don't feel that comfortable with her experience level, not to mention that her statements to us were a bit confusing. In any case, we're praying for clear scans on Wednesday... Best wishes, Cynthia

    Cynthia Im afraid I have lost the thread about Rick,s
    situation right now according to last scans you have.Would you clarify it to me ? I would appreciate it.
    Big hugs to both.
  • LivinginNH
    LivinginNH Member Posts: 1,456
    pepebcn said:

    Cynthia Im afraid I have lost the thread about Rick,s
    situation right now according to last scans you have.Would you clarify it to me ? I would appreciate it.
    Big hugs to both.

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia
  • tootsie1
    tootsie1 Member Posts: 5,036
    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,036
    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail
  • tgarris3
    tgarris3 Member Posts: 23
    tootsie1 said:

    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail

    Dads Surgeon
    My dads surgeon still does followups every 6 months and does a yrly colonoscopy.. He was dx in June 2009 with Stage IV w/mets to liver... He has been on chemo since July or Aug of last year continuous... He is doing great! Just wanted to say that I may not chime in much, but this place has been a life saver for me.. You all are great!!
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia

    5FU/Avastin
    Hi Cynthia,

    I think I missed the first posts about Rick's situation, so I'm a little intrigued here. When he was first diagnosed, I'm not sure what kind of treatment he had, or was the HIPEC surgery the first treatment? If it was and now the doctor is saying he needs to do the 6 months of 5FU/Avastin, that makes sense to me.... even if there was no visible signs of cancer after the surgery, it is pretty standard to do 6 months of chemo post-surgery, just to make sure that the patient is given every possible chance of catching any stray cancer cells that might be floating around one's system, especially after surgery. So, assumng the PET/CT scans come back clean, then you can sort of look at the 5FU/Avastin as an "insurance policy", so to speak.

    Where I am confused is where the doctor said if the 5FU/Avastin doesn't work, then all you are left with is trials. I'm assuming he means by "not working" is that if the PET/CT scan show cancer anywhere, be them new growths somewhere or growths in the peritoneal cavity and after 6 months of this chemo these growths are larger or there are new growths... then all that has really proved is the 5FU/Avastin chemo didn't work as well as you would like it to. If that's the case, then why can't he try some of the other chemos such as Ertibux (if he is KRAS tested and found that it might be beneficial) or Irinitocan, or a combination of any of these? Why does Rick's doctor think that if this one combo of 5FU/Avastin is the only chemo he can try? Or did I miss something in some of the posts that may have explained this?

    Cheryl
  • LivinginNH
    LivinginNH Member Posts: 1,456

    5FU/Avastin
    Hi Cynthia,

    I think I missed the first posts about Rick's situation, so I'm a little intrigued here. When he was first diagnosed, I'm not sure what kind of treatment he had, or was the HIPEC surgery the first treatment? If it was and now the doctor is saying he needs to do the 6 months of 5FU/Avastin, that makes sense to me.... even if there was no visible signs of cancer after the surgery, it is pretty standard to do 6 months of chemo post-surgery, just to make sure that the patient is given every possible chance of catching any stray cancer cells that might be floating around one's system, especially after surgery. So, assumng the PET/CT scans come back clean, then you can sort of look at the 5FU/Avastin as an "insurance policy", so to speak.

    Where I am confused is where the doctor said if the 5FU/Avastin doesn't work, then all you are left with is trials. I'm assuming he means by "not working" is that if the PET/CT scan show cancer anywhere, be them new growths somewhere or growths in the peritoneal cavity and after 6 months of this chemo these growths are larger or there are new growths... then all that has really proved is the 5FU/Avastin chemo didn't work as well as you would like it to. If that's the case, then why can't he try some of the other chemos such as Ertibux (if he is KRAS tested and found that it might be beneficial) or Irinitocan, or a combination of any of these? Why does Rick's doctor think that if this one combo of 5FU/Avastin is the only chemo he can try? Or did I miss something in some of the posts that may have explained this?

    Cheryl

    Hi Cheryl, Thank you for

    Hi Cheryl, Thank you for asking, and no, you didn't really miss anything - your second paragraph is right on. But for reference, I'll provide you with a quick summary:
    Rick was diagnosed in Dec. '09 and had colon surgery to remove the tumor; Folfox (4 cycles), liver surgery in March to remove 4 tumors; Folfox through August; six weeks later PET/CT found tumors in peritoneal cavity; Nov - HIPEC; recovery for two months, awaiting scans on Wednesday. Dr. said that since Folfox didn't stop the tumors from developing in the peritoneal cavity, she will put him on 5FU/Avastin for at least 6 months. And since Rick is a Kras mutant, Eribux won't work. Therefore, if the 5FU and Avastin don't work or stop working, she indicated that there's nothing left but trials. That's why we're now hesitant to leave Dana Farber, but we really don't like this particular onc. very much. You know, I really HATE cancer!! :-(

    Take care, Cynthia
  • pepebcn
    pepebcn Member Posts: 6,331

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia

    Cynthia ,thank you so much!
    Since I was a kid I have been too " nosy " hahahaha!
    Lots of luck on Wednesday, l will pray for it!
    Hugs!