Does Chemo-Radiation Increase Chance of Fistula?

Msmoxie said:

causes of recto-vaginal fistula

Hi Kim,  I knew I had read of fistula being caused by neglect of the tumor and I just looked into it:

The most common cause of a rectovaginal fistula is injury during childbirth. Other causes include:

• Crohn's disease
• Complications following surgery to the perineum (area between vagina and rectum), vagina, rectum, or anus
• Radiation treatment or cancer in the pelvic area
• Perianal infection

Radiation:  the gift that keeps on giving... as some people here have put it on their thread.

The side effects of radiation are numerous and continue well past the actual radiation treatments and this is from what I read from survivors ... not just all of the journal articles and research.  I know that you too do tons of research on this anal cancer.  I wish that there was a greater sense of urgency on the physicians part to find better / less harmful treatment options.  I am studying the anti-angiogenic approach to these tumors (since if you could cut off their ability to form the blood vessels that these tumors need - you could stop them from growing, etc.) and I continue to work on my immune system.  

Sending you positive energy Kim : )

Thanks MsMoxie. Sending positive energy back to you too in your search for a more benign way to address this cancer. Like you, I have been investigating alternatives like mad. And I have certainly been looking at the anti-angiogenisis approach. I was thinking a drug like Avastin for that purpose, in conjunction with other treatments (immunotherapy, specifically - more on that further down). Although if you can find a non-drug way to achieve anti-angiogenesis, that would be even better.

In my own case, I feel I have run out of time in my search for alternatives because bowel movements have become quite difficult due to tumor growth. The pipe will become blocked at some point, and that would require emergency surgery. For that reason, I have VERY RELUCTANTLY decided to proceeed with chemo-radiation, beginning in about 5 weeks, since that will be quickest way to shrink the tumor (although the damage it will leave in its wake horrifies me).

FYI (in case you are looking into this too), I spent a lot of time and consults with doctors exploring the new immunotherapy drugs such as Keytruda and Opdivo. These truly achieve miracles for some cancer patients, but do nothing for others. There are some studies on each of those 2 drugs saying they 'look promising' for anal cancer. I had my PD-L1 marker tested and am positive... which COULD mean I would be likely to respond to immunotherapy. But that marker is not predictive for all cancers, and no one yet knows if it is predictive for anal cancer.

The only way I can get immunotherapy in Canada is to self-pay at a cost of $36,000 ($6,000/treatment for 6 treatments). I would go into debt to try that if it weren't for the fact that I now need to shrink the tumor urgently to avoid emergency surgery. The immunotherapy drugs won't work that fast (if they work at all).

If I didn't have a second cancer (Chronic Lymphocytic Leukemia), there are several clinical trials of immunotherapy drugs in US and Canada that I would qualify for with anal cancer, where I could get the drugs for free. But a second malignancy is a deal-breaker for trial eligibility with these drugs. I recall you having a 2nd cancer too (breast), so you may be in same boat unfortunately if you go looking at the clinical trials for immunotherapy for anal cancer. 

I will consider self-funded immunotherapy down the road if cancer recurs after chemo-radiation. And I am continuing with various naturopathic protocols.

Good luck to you MsMoxie!

kim

Msmoxie said:

more on immuno

Hey Kim,  Great to hear from you.  I have my repeat PET CT scan on Tuesday coming up... then will see the surgeon.  In my case I have not had a problem with blocking up because neither sphincter works ... plus the fistula... but since nearly a year has gone by ... I still DO NOT want the radical APR nor any lymph node removal I am now considering going ahead with an ostomy.  That would bring me a lot of comfort in not spending so much time of every day just cleaning up ( prefer to avoid any surgery at all cost)... plus I would be able to go swimming (which is out of the question now).  If I can get the surgeon to agree and only make me a great ostomy (no complications please)... I believe I can deal with that while still trying to shrink/stop the tumor in its tracks with alternatives.  I believe if I find the right surgeon ... even cryotherapy might work on the majority of the tumor... or maybe they can strangulate the blood supply (which is how they remove testicles the cheap way on bull calves, etc.)... Im open minded to whatever I believe could help and won't hurt me.

So, my PET is Tuesday and consult with oncologist the following day.

The following link is recent info on using our own cells...  

https://www.theguardian.com/science/2018/jun/04/doctors-hail-world-first-as-womans-advanced-breast-cancer-is-eradicated?via=newsletter&source=CSPMedition

Best to you Kim

Hi Moxie. Would you be interested in exchanging emails or phone numbers so we can chat outside of this forum? If so, you can private-message me here on this forum with your coordinates, and I will reply off-forum giving you mine.

Would be helpful to me to chat more fully about this dilemma with a like-minded person. (I will completely respect your privacy.)

kim

ACinNC said:

Does Chemo-Radiation Increase Chance of Fistula

Kim,

I had a fistula (rectovaginal) occur just as symptoms got so bad that I stepped up seeking answers.  I had a large tumor that, like yours, invaded the vaginal wall.  My tumor also invaded the rectal wall and connected with the levator ani muscle on one side in the pelvis. And I had an extension of the tumor out the anus that I thought (wrongly) was just a really ugly hemorrhoid. I had regional nodes involved and one non regional node but no mets.  I did not ask for survival odds but did seek a 2nd opinion of a major medical center group who concurred with the standard Nigro protocol.  The only differenence in their plan of care was that I would end up with an ileostomy rather than the colostomy that I have now.  Oh, and the surgical oncologist there said I would end up with no vaginal wall where the tumor invaded.  She said there would be a void and I would need reconstructive surgery.  She was very wrong.  So it's not good to listen to those who prognosticate dire outcomes without getting other opinions.  I am glad I stayed with my first set of doctors.  But they don't sugar coat the possibility that I could have recurrence or mets.   But I was in significant pain and wanted the tumor shrunk quickly so I didn't venture into clinical trials or anything that would delay treatment.

I finished chemoradiation 14 months ago.  My rad onc thought the fistula would heal.  My colorectal surgeon thought it wouldn't.  It appears my rad onc could be right. A recent exam under anesthesia and two separate tests to find the fistula turned up negative.  But that doesn't mean it's not there as sometimes they are hard to find on tests as I was advised by the colorectal surgeon.  In fact, an MRI with local contrast, which is supposed to be a sensitive test for fistulas, did not detect it early on. I will have a PET scan this week to make sure there is no area of concern and then I will consider having the colostomy reversed.

My rad onc agreed that radiation itself can cause fistulas due to the weakening of the tissues. But that can occur at any time after treatment, sometimes years later.  So while it is a possibility, having the tumor enlarge will also increase your odds of a fistula.  And having stool and gas come out through the vagina is horrible!!!  I'll warn you that having vaginal wall involvement may make you shed some pretty gross stuff through the vagina in the later weeks of radiation.  I was changing pads almost every hour.  But it did ease up a few weeks after treatment ended.  Perhaps that won't be the case with your treatment.  

I wish you well in your treatment.

Thank you very much for this inforamtion, ACinNC. What stage were you? Stage 3? Your tumor invasion sounds quite similar to mine with some invasion of rectum, vaginal wall and extension out anus.

Good luck on your PET Scan this week. How are you doing in terms of recovery and daily life 14 months post-treatment? Are you able to walk distances, sit, go places as normal?

It looks like I will begin treatment July 16th. I have a PET scan July 4th that will stage me more precisely.

kim

ACinNC said:

I was staged by CT at 3b.  The new standards I have seen this year would have made me 3c.  

Survivors talk frequently about the physical part of recover but I don't see nearly as much in the mental recovery aspect. Recovery for me was as difficult mentally as it was physically.  Never having been prone to depression, I discovered how difficult it can be.  I thought about trying a med but that's not my way.  I eventually found information in the old book by Frankl "Man's Search for Meaning"  that was meaningful and gave me a way to rethink my future with major body changes. At the time I was given the news, I had just come out of anesthesia from having the external tumor removed so the grogginess helped me cope then it was all a blur after that.  You have had plenty of time to absorb the diagnosis and learn as much as you can and I'll bet you will handle recovery better than I.  

I had just come off having radiation for breast cancer the year before the AC and have had a chronic blood disorder (cancer) that causes fatigue so my body was depleted when I went into treatment.  14 months later I still deal with fatigue that is ongoing only it is a little worse as a result of AC treatment.  I had a node at L5 zapped and that has created pain and stiffness. And I have a lot of lower body pain and stiffness.  But I am fairly active.  Love those afternoon naps, though.  We just got back from a week long vacation and the prolonged sitting flared up lymphedema in the legs that started occuring earlier this year.  I don't see lymphedema mentioned much as an later effect of radiation.  I plan to discuss that with my rad on in a couple of weeks to get a referral for manual lymphatic massage .  I already am doing the other recommended things.

I hope your PET scan has no surprises in store and just reveals the tumor and probably the nearby nodes.

 

Thanks again ACinNC! I happen to have Chronic Lymphocytic Leukemia (CLL), in addition to this newer AC diagnosis, which I received in March this year. Is your blood cancer the same perhaps?

kim