recurrence questions

gbeccles
gbeccles Member Posts: 5
edited March 2014 in Colorectal Cancer #1
In 2005, my wife was treated w/ radiation & chemo for (anal) 'squamus cloacogenic carcinoma'. Last fall, it was found to have recurred (in some sense) and she had a colostomy to remove her rectum. The recurrence was found when they went to treat an anal fissure - it apparently did not show up on the CT scans she'd been having.

After the colostomy, they said that the pathology showed "microscopic cancer cells" in the lymph tissue. Her oncologist says to just continue "close monitoring" (CT scans, I think), and doesn't recommend any other treatment (chemo) at this time. Treatment for the original anal cancer involved quite a bit of radiation to that area, and they don't want to give her more there.

Questions:

1. Does "microscopic cancer cells in the lymph tissue" imply anything particular? (Like, "expect another round of cancer"? "game over"?)

2. Is there any special value in getting a second opinion? Her sister is pushing this - she wants us to go to Sloan-Kettering. IMO, this would not likely be useful at this point - all they could do is look at the same pictures that the people here (Syracuse NY) are looking at. But, I could be wrong.

3. She had an apparent allergic reaction (sneezing) to the iodine injection before one of her CT scans. Since then, they haven't give any contrast. Does this seriously compromise the quality of the pix?

And, any other thoughts/comments would be appreciated.

Thanks,

George

Comments

  • PGLGreg
    PGLGreg Member Posts: 731
    #2
    I think you should get a second opinion. It seems strange to let the cancer go untreated. (They may be able to substitute some other contrast agent so as to continue CT scans with contrast.)

    Greg
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Hi -

    You wife's allergic reaction to CT contrast sounds mild (sneezing). With my 8th CT scan I developed a wierd, very dry cough. We didn't think anything of it, but it happened again after the 9th one. While coughing (and sneezing) are not typical allergic reactions, my onc and radiologist decided to pre-medicate me - a regimen of prednisone and benadryl during the 24 hrs prior to the scan. No cough. Whether I developed no cough, just because, or it was due to the pre-med I don't know, but from now on we will go with premed protocol. This is pretty standard, so i am sort of surprised that they didn't suggest premeds for your wife, given that sneezing is not a typical or severe reaction.

    I don't know anything about "squamous cloacogenic carcinoma" - but if I were you I would like to have a second opinion to find out why some form of treatment is not being recommended. There may be a perfectly good reason, but offhand just waiting to see if CT shows up something seems a little too passive to me. A second opinion doc would be looking at the same pics, probably, but they might have an entirely different view of the pathology results.

    Take care,
    Betsy
  • scouty
    scouty Member Posts: 1,965 Member
    #4
    Hi George,

    Answers to your questions:

    1. Cancer cells in lymph tissue can mean many things but rarely does it mean "game over". I'm guessing they removed them or they wouldn't know in the first place, that is what they usually do.

    2. Is there any special value in NOT getting a second opinion should be your question. What have you got to lose? Best case, they will say the same thing that your other docs say but my experience with people that have gone for second opinions at comprehensive cancer centers (like Sloan-Kettering), they have had eye opening experiences with significant treatments differences and never looked back. Why wait until it is too late to do much about a second opinion. NIP it in the bud NOW. FYI, the place I went to first had a CT scan machine that only went to 10 mm and when I changed to a comprehensive cancer center, their machine went to 5 mm and picked up my liver mets and lung met before they got too far out of hand. The other one missed them so NOT ALL CT SCAN PICTURES ARE CREATED EQUAL!!!!

    3. I have developed a really nasty allergic reaction to the CT contrast (meds don't help at all) and my oncologist says the procedure without the contrast is pretty ineffective.

    Hope this helps, keep us posted and give your wife our best!!!!!

    Lisa P.
  • gbeccles
    gbeccles Member Posts: 5
    #5
    scouty said:

    Hi George,

    Answers to your questions:

    1. Cancer cells in lymph tissue can mean many things but rarely does it mean "game over". I'm guessing they removed them or they wouldn't know in the first place, that is what they usually do.

    2. Is there any special value in NOT getting a second opinion should be your question. What have you got to lose? Best case, they will say the same thing that your other docs say but my experience with people that have gone for second opinions at comprehensive cancer centers (like Sloan-Kettering), they have had eye opening experiences with significant treatments differences and never looked back. Why wait until it is too late to do much about a second opinion. NIP it in the bud NOW. FYI, the place I went to first had a CT scan machine that only went to 10 mm and when I changed to a comprehensive cancer center, their machine went to 5 mm and picked up my liver mets and lung met before they got too far out of hand. The other one missed them so NOT ALL CT SCAN PICTURES ARE CREATED EQUAL!!!!

    3. I have developed a really nasty allergic reaction to the CT contrast (meds don't help at all) and my oncologist says the procedure without the contrast is pretty ineffective.

    Hope this helps, keep us posted and give your wife our best!!!!!

    Lisa P.

    in re ...
    > Answers to your questions:

    > 1. Cancer cells in lymph tissue can mean many things ... I'm guessing they removed them or they wouldn't know in the first place, that is what they usually do.

    My understanding is that they found them when they did the pathology on the tissue they removed with the colostomy. The implication was that the cancer was not contained in what they removed.

    > 2. ... FYI, the place I went to first had a CT
    > scan machine that only went to 10 mm and when I
    > changed to a comprehensive cancer center, their > machine went to 5 mm .. so NOT ALL CT SCAN
    > PICTURES ARE CREATED EQUAL!!!!

    That's helpful. Thank you.


    > 3. I have developed a really nasty allergic
    > reaction to the CT contrast (meds don't help at
    > all) and my oncologist says the procedure
    > without the contrast is pretty ineffective.

    That's helpful, too - the (apparent) fact that they've been going ahead w/ something ineffective raises some questions. Also - as someone else noted - it's odd that they didn't at least try to do something to compensate.

    I should point out that she has had two PET scans - one right after the original treatment, and then again after this new tumor was found. Both were clear; but, the radiation left a lot of scarring, so I'm not sure how significant that is.

    Again, thanks,
    George
  • katefm
    katefm Member Posts: 112 Member
    #6
    Hi George-

    I'd go to Sloan-Kettering in a heartbeat - espeically since you can drive there. Getting a second opinion will give you peace of mind. We go to Sloan Kettering for our second opinions and we're in Wisconsin! I think it's worth the trip.

    Best of luck to you-
    Kate
  • taraHK
    taraHK Member Posts: 1,952 Member
    #7
    Hi George,
    My interpretation of microscopic cancer cells in the lymph tissue would be that the cancer did 'escape' from the tumour. I would have thought more chemo would be recommended -- just in case there are any more micro cells floating around. But this is just my humble opinion. I understand the no more radiation recommendation. My body certainly couldn't have handled more!. I was diagnosed with rectal cancer. I had presurgical chemoradiation then surgery (with removal of rectum and permanent colostomy). I had one positive lymph node. I then had more chemo. I understand your wife's situation is somewhat different, and there are different schools of thought regarding chemo choices....

    I am somewhat allergy prone and always get some 'premeds' (steroids) before CT scan with contrast.

    I agree with the others that you have nothing to loose and maybe something to gain by a second opinion. It shouldn't be considered an 'insult' to your current doctor/team -- in my opinion, it is a healthy thing to do.
    Best wishes to you and your wife.
  • minniemoose
    minniemoose Member Posts: 10
    #8
    A second opinion never goes wrong and maybe she should get one...I had cancer cells left after surgery for which they gave me 6 months of chemo to clear them up...I didn't have any more radiation after surgery thank goodness...the 20 sessions I had scarred and damaged my bladder so bad I have to take pills to stop going to the loo every five minutes....

    But I kinda think I would be wanting to know why I wasn't having chemo to kill off the rest of any cancer cells left....a visit with the onc and ask him why not....I think I would demand it as a precaution....
  • gbeccles
    gbeccles Member Posts: 5
    #9
    minniemoose said:

    A second opinion never goes wrong and maybe she should get one...I had cancer cells left after surgery for which they gave me 6 months of chemo to clear them up...I didn't have any more radiation after surgery thank goodness...the 20 sessions I had scarred and damaged my bladder so bad I have to take pills to stop going to the loo every five minutes....

    But I kinda think I would be wanting to know why I wasn't having chemo to kill off the rest of any cancer cells left....a visit with the onc and ask him why not....I think I would demand it as a precaution....

    "But I kinda think I would be wanting to know why I wasn't having chemo to kill off the rest of any cancer cells left....I think I would demand it as a precaution..."

    That's on our list. It's strange: until now, everyone has seemed very competent and engaged. Appearances can be deceiving, but it really has seemed that way. With this report, though, it was like something changed. For one thing, no one has really talked to us about what this means. We see the surgeon regularly, for follow-up on the colostomy. But, he seems to be deferring to the onc about this. From her, we hear (via the surgeon) that she doesn't think any chemo is called for, and she'll see us at the next appointment (April).

    I called the onc, and talked to her NP/PA/whatever - who said (as I understood it, anyway) that there was "nothing to treat." They'd just watch for any new developments, and treat them as appropriate. We also got a kind of fuzzy, vague response at the 'support group' run by the same practice (HOA of CNY). They have a PA 'moderating' the group, who seemed to be being pretty careful not to say anything 'diagnostic'.

    All of which _could_ well be OK, for all I know. But, it feels funny. My wife doesn't want more chemo. She hasn't really been 'well' for a couple of years (or much longer, depending on what you count), and just wants to be done with it. It's hard to know what to do.

    Thanks to all.

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