Background:
About two years ago, my wife was diagnosed w/ anal canal "squamus
cloacogenic carcinoma". She had standard treatment (chemoradiation),
and then a clean biopsy, PET, and CT. Last December, they found it had
recurred in her rectum, and she had a colostomy (APR). After the APR,
the pathology report showed "microscopic cancer cells in the lymph
tissue." (My understanding is that this would have to be in lymph that
was removed as part of the surgery.)
Nobody made a big deal about this, so we weren't sure how to interpret
it. The plan is to continue regular CT scans. But, since then, from
reading and from relatives' discussions with other doctors, I'm getting
the idea that the prospects are kind of not very good.
The big question we have is this: from what I've read and heard, the
current plan is pretty much the only recognized one - that there is no
accepted therapy to do now, except monitor for new tumor sites. Is this
true? This would be OK - I just want to be sure we're not missing
something.
Thanks,
George
J - 16 Mar 2007 19:32 GMT
> Background:
>
[quoted text clipped - 19 lines]
> Thanks,
> George
Welcome George.
I don't know the answer to your question.
Let's see if there's comments from others.
J
turtletrot1 - 18 Mar 2007 02:59 GMT
> > Background:
>
[quoted text clipped - 24 lines]
> Let's see if there's comments from others.
> J
How about referring him to a colon/rectal specific cancer site? I
still get info from those I used during Franzi's journey.
J W - 18 Mar 2007 15:09 GMT
Here are links to several colorectal cancersites that are very useful
and helpful.
1. ACOR colon cancer newsgroup
http://listserv.acor.org/archives/colon.html
2. C3 colon cancer coalition
http://www.fightcolorectalcancer.org/news/2006/10/colon_cancer_alliance_sponsori
_1.php
3. Colon cancer alliance link
http://www.nccrt.org/RoundtableMembers/RTMemberDetail.aspx?rt_member_id=23
4. Colon cancer alliance link
http://www.ccalliance.org/
5. Paitent advocate foundation - for copay assistance and many other
programs to assist cancer patients.
http://www.patientadvocate.org/
J - 20 Mar 2007 09:48 GMT
> > > Background:
> >
[quoted text clipped - 27 lines]
> How about referring him to a colon/rectal specific cancer site? I
> still get info from those I used during Franzi's journey.
I was hoping that Steph would make an appearance as to whether RT would be
useful at this juncture (or not).
How about ACOR? Are there specialists on that list?
J
George - 20 Mar 2007 15:42 GMT
>> > > Background:
>> >
[quoted text clipped - 9 lines]
>> > > Thanks,
>> > > George
>> ...
>>
>I was hoping that Steph would make an appearance as to whether RT would be
>useful at this juncture (or not).
>How about ACOR? Are there specialists on that list?
If RT is radiation therapy, we're told that she can't take any more in
that area.
G
J - 20 Mar 2007 17:31 GMT
> >> > > Background:
> >> >
[quoted text clipped - 18 lines]
> If RT is radiation therapy, we're told that she can't take any more in
> that area.
Oh I see George. Thjank you for the additional information.
Steph usually says there's no limit, but he has the benefit of having (usually)
treated the person the first time around and has them there to examine and examine
their RT history as to fractionations (etc). So I don't want to talk you into
something your wife should not have.
He works for the agency in this Province and this is what it says
<http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Gastrointestinal/07.Anu
s/Management/default.htm>
Squamous and basal cell cancers of the anal margin, including carcinoma in situ and
early invasive carcinomas, should be treated with local excision, providing
adequate margins can be obtained without endangering sphincter function. More
extensive tumours should be considered for combined chemotherapy and localized
radiotherapy.[quote]
So your wife had chemo/radiation instead. Which seems consistent with US web pages
I saw. But since I don't know the extent of her tumor(s), it's hard to come to any
conclusion about the initial treatment. (and I would have deffered that to Steph
anyway, since he's "our" expert here.
I'll go back to your first post for the rest of my reply.
J
George - 20 Mar 2007 18:22 GMT
>> >> > > Background:
>> >> >
[quoted text clipped - 38 lines]
>conclusion about the initial treatment. (and I would have deffered that to Steph
>anyway, since he's "our" expert here.
Thanks. Just to fill in the details here ...
She had local excision, plus chemoradiation. Chemo was 5-FU +
mitomycin. I wrote the phrase "5000 rads" in my notes; there's a pretty
good chance that the radiologist said that was the dose he gave.
We never were clear on the size of the original tumor. The guy who
found it (by colonoscopy) drew us a little circle, about 1/4" across.
The surgeon said 4x4 cm. We called, and never got a clear account of
why these were different. I suspect the surgeon had it right. The
original CT didn't show any lymph node involvement, so I think that
would make it stage II.
G
turtletrot1 - 20 Mar 2007 21:13 GMT
...
" Steph would make an appearance as to whether RT would be
> > >useful at this juncture (or not)."
> > If RT is radiation therapy, we're told that she can't take any more in
> > that area.
>
> "Steph usually says there's no limit,..........."
I doubt that Steph or any radiologist would say there is no limit.
The human body can tolerate just so much. No more. I know that
Franzi reached his limit and could not have additional for the
recurrence.
J, you have to do a little more research on radiation. As for
"Talking ...into" Be careful what you recommend. You do not have the
background for such.
J - 20 Mar 2007 22:43 GMT
> As for"Talking ...into"
Read my post again. You snipped too much.
J
Steph - 26 Mar 2007 05:36 GMT
> ...
> " Steph would make an appearance as to whether RT would be
[quoted text clipped - 12 lines]
> "Talking ...into" Be careful what you recommend. You do not have the
> background for such.
There is no magic number which is a limit.
But you can't do curative treatment twice, generally. And if it didn't work
the first time...........
But additional RT for palliation is certainly possible,
Steph - 26 Mar 2007 05:34 GMT
>> >> > > Background:
>> >> >
[quoted text clipped - 55 lines]
> I'll go back to your first post for the rest of my reply.
> J
Sorry, chaps, I was in the uk presenting at a conference.
The only possible curative treatment for recurrent anal canal cancer after
RT/chemo is surgery, and it almost always means an ap resection.
There is room for palliative RT or chemo
J - 20 Mar 2007 17:58 GMT
> Background:
>
[quoted text clipped - 16 lines]
> true? This would be OK - I just want to be sure we're not missing
> something.
Hello George,
It's my understanding that the lymph tissue, that had the microscopic cancer
cells" in it was removed. I would have thought that would have been
followed by judicious RT, but you've since told us she had her limit (of
RT), with the anal cancer treatment.
I understand, that there's a worry that more microscopic cells may have
escaped elsewhere into her body. But I have to explain something to you.
Around the 3rd or 4th regimen of chemo (no matter what chemo /name/brand),
the cancer cells become "chemo resistant", so if your wife had more chemo
now or after her APR, that would have been her 2nd regimen and well on her
way to "chemo resistance". So then if more cells escaped the 2nd regimen,
and more tumors grew, the 3rd regimen would have been next to useless and
toxic to her. So, in my non-expert understanding, it's best now just to
wait it out and hope for the best that they got it all. Should more tumor
occur, surgery may still be possible or chemo to shrink one or more tumors
for palliation. (which would still be effective ..ie not chemo-resistant).
So while, it's somewhat nerve-wracking to wonder if there's more microscopic
cells in her body, at this time, it's better to not have chemo until and IF
something appears. There's others here, with various types of cancers,
wondering if and when "the other shoe will drop". I and Steph encourage
such patients to get on with their lives and worry as little as possible.
While we're worrying about this issue, we miss out on a lot of living.
That web page I posted to you, also mentions "Abdominoperineal resection is
reserved for patients who have persistent or recurrent disease following
combined chemo-radiotherapy, or as primary therapy for patients with large
tumours that have destroyed the anal sphincter." and
"A proportion of patients will have persistence of or development of
inguinal metastases following chemotherapy and radiotherapy If this is the
only site of additional disease, inguinal node dissection is usually
recommended which may be combined with further radiotherapy. Surgical and
radiation approaches for paravertebral nodal disease are not routinely
recommended, due to anatomic location and associated technical complexity."
[end quote]
Under :"follow up" sectin it says
"They should be seen as follows:
* First two years - every six- eight weeks
* Third year - every six months
* Fourth and fifth years annually [end quote]
I think Steph's away for a few weeks. I would appreciate if you posted again
when you see his name appear on the newsgroup, tell him the story and ask
him what frequency and follow up tests should be done. I would feel more
comfortable if you did that. Then you can compare to what you've been told
at your end (from her experts).
I wish you well and hope to see you later, after Steph's reappeared.
If you wish to check elsewhere you could try the ACOR list under "colon" and
see what their opinions are, but don't forget if they suggest chemo, about
chemo-resistance. Not everyone knows about it. The list is here and click
on the list name to subscribe. http://www.acor.org/mlists/mlists.html
Best wishes,
J
PS Hang on to this as well
http://www.acor.org/news/whatsnew.html?item_id=5268
or you might wish to discuss this with her doctors, in case. and may she
keep her liver in good shape in the meantime.
J - 26 Mar 2007 06:49 GMT
> Background:
>
[quoted text clipped - 19 lines]
> Thanks,
> George
Steph,
Too late to bother having RT and/or chemo now? The surgery was December.
J
George - 31 Mar 2007 01:56 GMT
>> Background:
>>
[quoted text clipped - 23 lines]
>Too late to bother having RT and/or chemo now? The surgery was December.
>J
Actually, the surgery was mid-January, if that matters. They found it
in late December.
G