Does Chemo-Radiation Increase Chance of Fistula?
I don't currently have a fistula. Vaginal wall intact. Will be starting chemo-radiation in about 6 weeks. Does chemo-radiation increase the chance of developing a fistuala? Perhaps by further thinning/damaging the wall separating anal canal and vagina? That's where my tumor is located - front side of anal canal, invading into back wall of vagina, but not yet through. Anything one can do during treatment to reduce that likelihood? So sorry for those of you dealing with fistula. This is not an easy road.
kim
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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 : )
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Thanks MsMoxie. SendingMsmoxie 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
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more on immunoKim Gaia said:Thanks MsMoxie. Sending
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
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
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Hi Moxie. Would you beMsmoxie 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
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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.
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Thank you very much for thisACinNC 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
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Kim Gaia said:
Thank you very much for this
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
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.
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Thanks again ACinNC! I happenACinNC 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
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dry brushing for lymphedema
Hello ACin NC, I read your note about the lymphedema. They report that when they remove or damage lymph nodes in the process of other procedures that the lymphedema can show up like two years post-treatment. One of the professional papers I read even said "youre probably overwhelmed when you get the diagnosis, so you probaby didnt hear the doctor telling you about it"
I call BS... they don't like to tell you the stats on it. The hospital here in NJ that diagnosed my breast tumor (after my AC dx) during mammogram.... BRAGS about treating four thousand women last year alone for lymphedema. Shame on them.
I even have an NIH paper from Sept. 2017 that finalizes: "Lymph node removal in AC is merely speculative" ... this is NOT okay if you ask me. I am hoping that my appt. with the surgeon will prove that he/she is open-minded and willing to read these papers that are studies for their own profession; though I know they do not have the time to read everything. I am quite sure they have their plate full if they see ten patients a day and whatever CE requirements of their facility... let alone they may have an area of special interest that they devote some time to.
Anyway... off my soapbox... The dry brushing was introduced to me in April of this year when I was able to see my LMT/ Orthobionomist / Healer. He told me to get a natural bristle brush that is very soft. You begin in your ankle area and lightly brush towards your body... begin slowly as the lymph built up is going to move and if you move a LOT of it at once your body is not used to the release of those toxins. Getting them to move and drain. There really are not any lymph nodes below our knees (why???? I do not know)... so you move the lymph up clear to the top of your thigh. You can do this lying down or sitting however comfortable. I raise my leg to stretch anyway so I dry brush during my strecthing. It has helped my edema a ton.
Also, if you don't mind my asking; When they removed the external tumor... how much tissue and margin and did they manage your pain??? I also have an external tumor and since I am preparing to see the surgeon... I am quite concerned about all of this.
Sending You and Kim and All suffering from this AC and other cancers Positive energies for healing daily!
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dry brushingMsmoxie said:dry brushing for lymphedema
Hello ACin NC, I read your note about the lymphedema. They report that when they remove or damage lymph nodes in the process of other procedures that the lymphedema can show up like two years post-treatment. One of the professional papers I read even said "youre probably overwhelmed when you get the diagnosis, so you probaby didnt hear the doctor telling you about it"
I call BS... they don't like to tell you the stats on it. The hospital here in NJ that diagnosed my breast tumor (after my AC dx) during mammogram.... BRAGS about treating four thousand women last year alone for lymphedema. Shame on them.
I even have an NIH paper from Sept. 2017 that finalizes: "Lymph node removal in AC is merely speculative" ... this is NOT okay if you ask me. I am hoping that my appt. with the surgeon will prove that he/she is open-minded and willing to read these papers that are studies for their own profession; though I know they do not have the time to read everything. I am quite sure they have their plate full if they see ten patients a day and whatever CE requirements of their facility... let alone they may have an area of special interest that they devote some time to.
Anyway... off my soapbox... The dry brushing was introduced to me in April of this year when I was able to see my LMT/ Orthobionomist / Healer. He told me to get a natural bristle brush that is very soft. You begin in your ankle area and lightly brush towards your body... begin slowly as the lymph built up is going to move and if you move a LOT of it at once your body is not used to the release of those toxins. Getting them to move and drain. There really are not any lymph nodes below our knees (why???? I do not know)... so you move the lymph up clear to the top of your thigh. You can do this lying down or sitting however comfortable. I raise my leg to stretch anyway so I dry brush during my strecthing. It has helped my edema a ton.
Also, if you don't mind my asking; When they removed the external tumor... how much tissue and margin and did they manage your pain??? I also have an external tumor and since I am preparing to see the surgeon... I am quite concerned about all of this.
Sending You and Kim and All suffering from this AC and other cancers Positive energies for healing daily!
msmoxie,
Thanks for the info on dry brushing. I have heard of it in the distant past and had not thought of it since. I'll give it a try.
About the external tumor, I went in to see the surgeon thinking it as a nasty hemorrhoid. I was having lots of pain and other usual symptoms of AC and he said befoer he looked at it that he would do a digital exam of the rectum but once he looked at the external thing he passed on the idea. Said he would do it once I went into surgery and he had me under anesthesia. He did not offer his suspicion that it was cancer at the office visit but on reflection I could tell by his body language that he knew. Anyway, all he did during surgery was remove the actual tumor extension sort of like what they do for a hemorrhoid. There was no wide excision of any sort. Had just a simple suture. It was great afterwards not having to clean around the tumor and having the foul drainage. It was really a minor surgery and healed well.
Then the "thing" went to pathology and when I awoke my husband was the first to tell me about the cancer. Then the surgeon filled in the details and gave me pain meds. I do not tolerate narcotics well at all but the pain was worse than the side effects of the pain pillls. I tried hydrocodone, oxycodone, and they even gave me fentenyl. Skip to the present and I am taking a pain pill for abdominal pain of unknow origin and am having success with tramadol. Tramadol doesn't cause - for me - the nausea, tiredness and overall sick feeling that the other meds did.
If you've got a good team they should work with you to get your pain under control. Pain is a great stress on the body and we need to lessen stress while battling cancer. Please report on what your surgeon says. I think having the surgery made the effects of radiation a tad easier to bear but then also I had a colostomy just before starting treatment and did not have to endure bowel movements through radiated tissue.
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CLLKim Gaia said:Thanks again ACinNC! I happen
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
Kim,
I do not have CLL. Mine is a myeloproliferative neoplasm called polycythemial vera. It's unregulated growth of primarily the red cell line but can also affect white cells and platelets. I thought I would have an edge on not having my counts drop during chemo since they are already high except white cells which are always borderline low. But as it turned out all my counts got extremely low. Was hospitalized with febrile neutropenia during treatment. With your CLL, I'm sure your concerned about infections. I would insist on very frequent CBC's during treatment if I were in your shoes. My team was very proactive with any signs of infection and I hope yours will be, too.
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thank you
Hello ACinNC, Thank you for your sharing. I am praying that the surgeon will do that for me... just take the external tumor and not my anus and rectum. I know they want to take everything because the tumors sit on the sphincters... I am praying that the surgeon will just accept that I do not want the radical APR surgery no matter what (as high as 78% complications because it is such a major and basically horrific surgery)... I could accept a colostomy to stop the incontinence which is a full time job just to stay clean. I could accept removing the tumor that is protruding but nothing else. I have my appointment to discuss the latest PET CT with my radiation oncologist tomorrow... I am anxious about the meeting because I do know that this tumor has gotten larger over the past six months.
I can't tolerate tramadol (already had two seizures on that med)... I don't do well with standard meds typically so I am concerned about unbearable pain.
Praying that we ALL get some relief from this demon AC!
Moxie
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surgeryMsmoxie said:thank you
Hello ACinNC, Thank you for your sharing. I am praying that the surgeon will do that for me... just take the external tumor and not my anus and rectum. I know they want to take everything because the tumors sit on the sphincters... I am praying that the surgeon will just accept that I do not want the radical APR surgery no matter what (as high as 78% complications because it is such a major and basically horrific surgery)... I could accept a colostomy to stop the incontinence which is a full time job just to stay clean. I could accept removing the tumor that is protruding but nothing else. I have my appointment to discuss the latest PET CT with my radiation oncologist tomorrow... I am anxious about the meeting because I do know that this tumor has gotten larger over the past six months.
I can't tolerate tramadol (already had two seizures on that med)... I don't do well with standard meds typically so I am concerned about unbearable pain.
Praying that we ALL get some relief from this demon AC!
Moxie
msmoxie,
Something to consider asking your surgeon is having a colostomy done before the tumor removal if that is all you are shooting for. Your quality of life should improve greatly just from not having to deal with constant incontinence. And it might be easier for the recovery from surgery not having stool in contact with the incision depending on how big/involved your tumor is. I try not to hate my colostomy because I know it gives me more freedom to leave the house. I am going to have some incontinence and it might be pretty much total incontience if I have the colostomy reversed. My tumor wasn't sitting on the sphincter but radiation pretty much made it stop working effectively.
If you do decide to have a colostomy, try to have a planning visit with the stoma nurse before surgery. I didn't have that luxury and ended up with a placement I am not thrilled about. If you have a big belly with skin folds, planning for placement helps locate the best position to avoid problems with the appliance such as leaking. I am thin and don't have that problem but have other issues with where it is.
I have decided not to have an APR if I have recurrence. I know some people do not have a prolonged or difficult recovery but I know my body and it's limitations and am not willing to go down that road for "salvage therapy" for which the odds are not that great. But if this is your initial way of treatment, if it were me I would consider it. It seems that pain control is a huge issue for you. But you will need to find a pain med that you can tolerate in any event. If you don't stop the tumor growth it eventually will cause pain. Have you tried all the other narcotics? If you could get a prescription just to try different ones to see how they would affect you, you could know ahead of surgery which one you could tolerate and then you might not be so fearful of post operative pain.
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No APR for me
Thank you for your helpful info. I believe that I need the permanent colostomy due to where the tumors are. I have been reading about the different ostomies and what influences the surgeons decision and definitely would meet with the ostomy nurses first... also I just found out a relative on my nieces husbands side is the owner of a wound care management outfit in Toledo and she is already helping me with info (small world after all)... Nobody wants an ostomy but when you have to have it so it is not draining you physically and mentally just to stay clean throughout the day (and I have had a full year of total fecal incontinence to make my decision) AND more importantly... I would like to be able to go swimming for I have always been a fish in the water with swimming and diving and all : ) So of course I am praying for a really nice ostomy with no leakage issues. I am a slim 5'11 and 180 pounds but getting to choose placement or at least have a say would be nice too.
Now I just have to figure the pain management. I will meet with that person too prior to any surgery because I do want the muscles relaxers on board with anesthesia so I don't wake up with the spasms that tend to cause me the most pain at this time. I have been working with my primary on pain meds because the first one they sent me can cause manic episodes and that's the LAST thing I need on top of all of this. My niece had a manic episode caused by going into kidney failure while she was driving and she ended up in the jail infirmary quite literally out of her mind from the toxins until we got an attorney. A terrifying experience that took six months to get through court and lawyers and all of the associated trauma. So I am actively pursuing what I can tolerate ...
The salvage surgery is just too much for my body as well. Too many complications and aftermath... once they remove your rectum your vaginal wall fuses to your spine and of course its not perfect and there is scar tissue and pain. And if they do all that they might just decide to take the vagina too. Then there is the reconstructive surgery with flaps of skin taken from other parts of your body... it's just too much to bear. The void they leave in your lower abdomen is unimaginable and the six months to a year of not being able to sit down or lie on your back and so on is not good. I still have yet to meet up with or talk to someone that has undergone this procedure ... I am quite certain that they are not back to any kind of normal for more than a year and these "standard protocols" leave so very much to be desired. So if I can achieve good communication with the surgeon and they agree to an ostomy only ... I will be looking forward to scheduling it.
Thank you againg for sharing.
Sending you positive energies : )
Moxie
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Fistula
My first chemo treatment caused my tumor to shrink so much that I developed a fistula. Almost two years later I still have it. I am on daily antibiotics. My colorectal surgeon does not have high hopes for a corrective surgery- it has very low success rates. Plus, if I had it done I would have to have a temporary colostomy beforehand, and if the surgery was not successful it would more than likely be permanent. :-(
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Hi, Kim... do you have theKim Gaia said:Thanks MsMoxie. Sending
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
Hi, Kim... do you have the name of the place in Canada that does immunotherapy for anal cancer? I don't have the 36,000, but I was just wondering about the company that offered that, whether it was reputable, and was interested in checking it out on the internet, just in case my cancer gets worse.
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