Stage 3b Anal Cancer

13

Comments

  • EvelynB
    EvelynB Member Posts: 72
    Lorikat said:

    Tx

    I had the same treatment prodicol that Lizideli had.  Cisplatin once a week and a fanny pack of FU5 by pickline 5 days a week and radiation 5 days a week, all for seven weeks.  I was stage II invasive anal Cancer that had migrated into the rectum.  Many docs would refer and still refer to my Cancer as rectal.... The tumor had begun to invade the vaginal wall....

    I was incredibly lucky to have Lizideli call me and explain a LOT of things that would have scared me witless, and then to meet her twice in Houston when our appts overlapped.  I will be 4 years NED in October!  

     

    Lorikat

    Congratulations on being 4 years NED!! Wow! Yours and Lizdeli's treatment was intense! Were you extremely sick during treatment? Since I still haven't had my follow-up biopsy, I am wondering if my treatment should have been more intense. I had the standard Mitomycin/5fu the first and 6th weeks of treatment along with 30 radiation treatments. Pet scan shows tumor responded but not sure if residual is still cancer or just scar tissue. My tumor was a total of 11.2 cm. It had migrated into the rectum and had spread to two lymph nodes.  Although the cancer migrated to the rectum, it is still anal cancer. My first pet scan came back marked Rectal cancer and I think this is what has caused some confusion about the method of treatment.

    I'm glad for you that you found support in Lizdeli. She seems very knowledgeable. It's great to have a support like that. Helps not make it all so scary.  

  • Lorikat
    Lorikat Member Posts: 681 Member
    EvelynB said:

    Lorikat

    Congratulations on being 4 years NED!! Wow! Yours and Lizdeli's treatment was intense! Were you extremely sick during treatment? Since I still haven't had my follow-up biopsy, I am wondering if my treatment should have been more intense. I had the standard Mitomycin/5fu the first and 6th weeks of treatment along with 30 radiation treatments. Pet scan shows tumor responded but not sure if residual is still cancer or just scar tissue. My tumor was a total of 11.2 cm. It had migrated into the rectum and had spread to two lymph nodes.  Although the cancer migrated to the rectum, it is still anal cancer. My first pet scan came back marked Rectal cancer and I think this is what has caused some confusion about the method of treatment.

    I'm glad for you that you found support in Lizdeli. She seems very knowledgeable. It's great to have a support like that. Helps not make it all so scary.  

    hey Evelyn!  Honestly?  I

    hey Evelyn!  Honestly?  I thought my tx was pretty standard...  Liz and I have the same oncologist, Dr. Eng, and she doesn't pull punches!  And yes, anal cancer migrating into rectum is still anal cancer.

    i was pretty sick after I reached the half way mark for tx.  I also ended up in the hospital after I got home from Houston in isolation because I was neutropenic.  Two blood transfusions and LOTS of antibiotics and a wound care specialist got me back on track.  second and third degree burns on my everything from radiation.

    I was stubborn and insisted we drive home the day after tx ended.  About eight hundred miles!  I stayed in a motel, sat on my poor burned up bottom for two days of travel, used rest stop restrooms etc....  No wonder I was in such rough shape!  I have to take some of the blame...

  • EvelynB
    EvelynB Member Posts: 72
    Lorikat said:

    hey Evelyn!  Honestly?  I

    hey Evelyn!  Honestly?  I thought my tx was pretty standard...  Liz and I have the same oncologist, Dr. Eng, and she doesn't pull punches!  And yes, anal cancer migrating into rectum is still anal cancer.

    i was pretty sick after I reached the half way mark for tx.  I also ended up in the hospital after I got home from Houston in isolation because I was neutropenic.  Two blood transfusions and LOTS of antibiotics and a wound care specialist got me back on track.  second and third degree burns on my everything from radiation.

    I was stubborn and insisted we drive home the day after tx ended.  About eight hundred miles!  I stayed in a motel, sat on my poor burned up bottom for two days of travel, used rest stop restrooms etc....  No wonder I was in such rough shape!  I have to take some of the blame...

    Lorikat

    I cannot imagine how in the world you did that!!! Your treatment was definitely more intense than the standard. Mine was 30 radiation treatments and Mitomycin/5fu treatments by picline for four days on week 1 and 4 days on week 6.(From what I understand, that is the standard) Do you know how much(gy) radiation you received? I normally have a high pain tolerance but after 30 days, I didn't feel like I could take anymore. My radiation dr said they usually only do 25 days of radiation but they gave me 30 because the tumor was so large.  

  • Lorikat
    Lorikat Member Posts: 681 Member
    EvelynB said:

    Lorikat

    I cannot imagine how in the world you did that!!! Your treatment was definitely more intense than the standard. Mine was 30 radiation treatments and Mitomycin/5fu treatments by picline for four days on week 1 and 4 days on week 6.(From what I understand, that is the standard) Do you know how much(gy) radiation you received? I normally have a high pain tolerance but after 30 days, I didn't feel like I could take anymore. My radiation dr said they usually only do 25 days of radiation but they gave me 30 because the tumor was so large.  

    No.  I don't know how much

    No.  I don't know how much radiation.  Will see if I can find out!

  • mxperry220
    mxperry220 Member Posts: 493 Member
    EvelynB said:

    Lorikat

    I cannot imagine how in the world you did that!!! Your treatment was definitely more intense than the standard. Mine was 30 radiation treatments and Mitomycin/5fu treatments by picline for four days on week 1 and 4 days on week 6.(From what I understand, that is the standard) Do you know how much(gy) radiation you received? I normally have a high pain tolerance but after 30 days, I didn't feel like I could take anymore. My radiation dr said they usually only do 25 days of radiation but they gave me 30 because the tumor was so large.  

    30 Treatments

    I was Stage 2 and had  30 radiation treatments plus Mitomycin and 5FU.

    Mike

  • mp327
    mp327 Member Posts: 4,440 Member

    30 Treatments

    I was Stage 2 and had  30 radiation treatments plus Mitomycin and 5FU.

    Mike

    Radiation amounts

    The usual radiation dosage per treatment is 1.8 gys.  I had 30 treatments which adds up to a total of 54 gys.  I was right on the fence between stage 1 and stage 2.  Maximum radiation dosage for AC is 59 gys or less, depending on stage.

    Martha

  • EvelynB
    EvelynB Member Posts: 72

    30 Treatments

    I was Stage 2 and had  30 radiation treatments plus Mitomycin and 5FU.

    Mike

    Mike

    Mike,

    Did that treatment work for you?  Have you had any recurences?

     

  • EvelynB
    EvelynB Member Posts: 72
    mp327 said:

    Radiation amounts

    The usual radiation dosage per treatment is 1.8 gys.  I had 30 treatments which adds up to a total of 54 gys.  I was right on the fence between stage 1 and stage 2.  Maximum radiation dosage for AC is 59 gys or less, depending on stage.

    Martha

    Martha

     Seems like you have really done your homework! Thanks so much for that information Hopefully it works on stage 3b as well as it has stage 1& 2.

  • sandra2468
    sandra2468 Member Posts: 2
    Help any possibility I may have anal cancer?

    My apologies for posting on this site as I have not yet been diagnosed.

    Just wondering if someone out there could advise.

    Some history

    1.  Low back pain on waking since 2004 possibly L5/S1 facet joint deteriation.

    2.  Incidental finding of pelvic lesion 2004 near sciatic nerve.

    3.  Monitoring of lesions since 2004 appear stable.

    4.  Last 5 years anal symptoms which began at night time with a pushing sensation in anus.

    5.  My initial concern this was a spreading of a cancer from my lesions that have though shown stability, however no certainties with S1-S3 involvemet of the sacral roots. Was told in 2004 no biopsy possible as lesions so near the sciatic nerve.  It must be said now after 10 years that these lesions are not coming form the nerve and therefore must arise from the internal organs, hence cannot be a nerve turmor.

    6.  A one off bout of bleeding 2011 in pan, not continual.

    7.  Sygmoidoscopy shows internal and external haemorrhoids.

    8.  Colonoscopy negative shows haemorrhoids which I am told need addressing by gastroenterologist.

    9.  Colorectal sureon disagrees with the analysis and I am discharged.

    10. Discomfort gets worst in anus, on waking which begins to effect my sitting down too.

    11. Proctorgram taken in fact 2 lying down MRI, showing prolapse in all 3 departments.

    Mobile womb at entrance of vagina, bladder low but not causing too many problems with leakage. Lining of bowel down.  No acknowledgement from colorectal surgeon that there is anything to do.  Banding not advised told nothing to band, No procedure recommended.  Discharged for pain management. Told that prolape is within limits.

    12.  Colorectal surgeon believes this is more of a uterine problem.

    13.  Gynaecologist examines.

    He is not convinced that my symptoms tie up with prolaspe.

    Symptoms

    Wake with discomfort in anus on waking lying on my back and bottom.

    Discomfort/pain worse when sitting.

    Relieved when standing and upright, hence I am not worse at the end of the day which is common with prolapse symtoms.

    14.  Seek advice.

    Banding adivsed by one surgeon

    HALO adivised by another surgeon

    Conflicting advice told that banding could make continence worse and advised against.

    Ventral rectopexy offered by colorectal surgeon, who infers that I have high grade intussuscception, after examination and looking at proctogram discs.

    However surgery for this is not without risk as there is a chance of mesh erosion, and it is a compled surgery not fully acknowledged by every surgeon as it is is a diffiuclt surgery.

    There is a 50-60 per cent chance of a success with the surgery.

    I do not suffer from consitipation, tummy pains, sickness which is common with intussusception.

    I suffer though with incomplete evactuation, and wiping several times.

    The worse is this feelig of sitting on excrement, or a foreign object left inside my anus.

    It is not pain but pure discomfort which is a huge disability.

    I had a colonoscopy 2011 which was negataive apart from haemorrrhoids, no biopsies were taken at the time.

    I had a high resolution anoscopy 2014.

    Anal cytology negative for HPV virus.

    Finally ventral rectopexy advised by one colorectal surgeon.

    However I fear the success rate and also fear that there may still be some other concerns too suich as an undetected cancer.

    My blood appear normal apart from a paraprotein which is non quantifiable, and so is monitored yearly.

    However hematologist inferred blood can remain normal with some cancers.

    My lymph glands under my arms are often up and painful.

    My anal sphincter muscles are getting worse.

    I am not able to do any anal sphincter or pelvic floor exercises, as I have too much discomfort when squeezing.

    Any adivce would be very much appreciated.

     

     

     

     

     

     

     

     

     

     

     

     

  • Lorikat
    Lorikat Member Posts: 681 Member
    mp327 said:

    Radiation amounts

    The usual radiation dosage per treatment is 1.8 gys.  I had 30 treatments which adds up to a total of 54 gys.  I was right on the fence between stage 1 and stage 2.  Maximum radiation dosage for AC is 59 gys or less, depending on stage.

    Martha

    My records says tx were 2.0

    I checked my records...  27 treatments at 2GY TO TOTAL 54 GY.  

  • EvelynB
    EvelynB Member Posts: 72
    Lorikat said:

    My records says tx were 2.0

    I checked my records...  27 treatments at 2GY TO TOTAL 54 GY.  

    Lorikat

    Thanks for checking that and letting me know. We had the same amount of radiation. You had alot more chemo than I did, though. Mine was only Monday through Friday on week 1 and week 6.

  • sephie
    sephie Member Posts: 650 Member
    Lorikat said:

    My records says tx were 2.0

    I checked my records...  27 treatments at 2GY TO TOTAL 54 GY.  

    same tx as you

    lorikat,,,,i had the same....27 tx for total of 54 gy.... both of us at MD anderson....i was stage 2 no nodes no mets.....they did not know the size of my tumor because i had a doc who tried to excise the whole tumor and stopped because it would have destroyed my spincter...... sephie

  • mxperry220
    mxperry220 Member Posts: 493 Member
    EvelynB said:

    Mike

    Mike,

    Did that treatment work for you?  Have you had any recurences?

     

    YES

    I have been cancer free since Januray 2009.  I have had no recurrence.

    Mike

  • EvelynB
    EvelynB Member Posts: 72

    YES

    I have been cancer free since Januray 2009.  I have had no recurrence.

    Mike

    Mike

    That's great news!!!

  • tallorder5793
    tallorder5793 Member Posts: 67
    Wishing you all the best

    Stage IV. I had radiation with no chemo following. But at next scan, I learned small lesions had returned to liver and spread to lung. I'm currently doing high dosage chemo. I have new scans in two weeks.

  • shamayim
    shamayim Member Posts: 22 Member
    mp327 said:

    Radiation amounts

    The usual radiation dosage per treatment is 1.8 gys.  I had 30 treatments which adds up to a total of 54 gys.  I was right on the fence between stage 1 and stage 2.  Maximum radiation dosage for AC is 59 gys or less, depending on stage.

    Martha

    radiation amounts

    Martha,

    I just looked at my radiation treatment summary and I had 22 treatments with 180 cGY dose of rapid arc(IMRT)? to a wider pelvic margin, and then 8 treatments of 180 cGy of a static type focused on the anal tumor for a total of 5400 cGy and 30 treatments. I took a 1 week break just after the second round of chemo.  I also had a vaginal cylinder shield in place during all radiation treatments to spare as much healthy vaginal tissue as possible. I believe the vaginal shield made a huge difference and my OBGYN was surprized to see how well the tissue looks considering what I've gone through.  I dont know if women typically have this inserted during treatment, but I had to ask about it.  In the beginning my radiologist said he had one other patient use one who was much younger than me, but in my opinion, any protection you can get, at any age is worth a try.  There is very little information on the shields but I found a study in Radiotherapy Oncology 21012 Aug 104(2):161-6  "Reproducibility and genital sparing with a vaginal dialator used for female anal cancer patients.  The results of the test showed a 5.5Gy mean lower dose to the vagina compared to patients without vaginal dialators.  It was only 10 patients, and it didnt compromise their tumor coverage.  Their conclusion(Im paraphrasing) was that IMRT treatment planning, use a vaginal dialator could allow for maximum sparing of female genitalia for patients undergoing radiation therapy for anal cancer.  The article was publihed by Elsevier Ireland Ltd.  Every woman in my opinion with anal cancer should know about this option and maybe the women out there are already using and are aware of this.  I just got the feeling it was not routine....

    Shamayim

  • mp327
    mp327 Member Posts: 4,440 Member
    shamayim said:

    radiation amounts

    Martha,

    I just looked at my radiation treatment summary and I had 22 treatments with 180 cGY dose of rapid arc(IMRT)? to a wider pelvic margin, and then 8 treatments of 180 cGy of a static type focused on the anal tumor for a total of 5400 cGy and 30 treatments. I took a 1 week break just after the second round of chemo.  I also had a vaginal cylinder shield in place during all radiation treatments to spare as much healthy vaginal tissue as possible. I believe the vaginal shield made a huge difference and my OBGYN was surprized to see how well the tissue looks considering what I've gone through.  I dont know if women typically have this inserted during treatment, but I had to ask about it.  In the beginning my radiologist said he had one other patient use one who was much younger than me, but in my opinion, any protection you can get, at any age is worth a try.  There is very little information on the shields but I found a study in Radiotherapy Oncology 21012 Aug 104(2):161-6  "Reproducibility and genital sparing with a vaginal dialator used for female anal cancer patients.  The results of the test showed a 5.5Gy mean lower dose to the vagina compared to patients without vaginal dialators.  It was only 10 patients, and it didnt compromise their tumor coverage.  Their conclusion(Im paraphrasing) was that IMRT treatment planning, use a vaginal dialator could allow for maximum sparing of female genitalia for patients undergoing radiation therapy for anal cancer.  The article was publihed by Elsevier Ireland Ltd.  Every woman in my opinion with anal cancer should know about this option and maybe the women out there are already using and are aware of this.  I just got the feeling it was not routine....

    Shamayim

    shamayim

    You are right, it doesn't seem to be standard practice to shield the vaginal canal during radiation.  One exception that I know of is at MD Anderson, where they insert a vaginal dilator for each radiation treatment.  I wish I had known about all of this prior to my treatment, but I did not, and my rad onc never addressed the subject.  Thanks for the info.

    Martha

  • EvelynB
    EvelynB Member Posts: 72

    Wishing you all the best

    Stage IV. I had radiation with no chemo following. But at next scan, I learned small lesions had returned to liver and spread to lung. I'm currently doing high dosage chemo. I have new scans in two weeks.

    tallorder

    Did you have chemo at all (while you were having the radiation)?

  • EvelynB
    EvelynB Member Posts: 72
    shamayim said:

    radiation amounts

    Martha,

    I just looked at my radiation treatment summary and I had 22 treatments with 180 cGY dose of rapid arc(IMRT)? to a wider pelvic margin, and then 8 treatments of 180 cGy of a static type focused on the anal tumor for a total of 5400 cGy and 30 treatments. I took a 1 week break just after the second round of chemo.  I also had a vaginal cylinder shield in place during all radiation treatments to spare as much healthy vaginal tissue as possible. I believe the vaginal shield made a huge difference and my OBGYN was surprized to see how well the tissue looks considering what I've gone through.  I dont know if women typically have this inserted during treatment, but I had to ask about it.  In the beginning my radiologist said he had one other patient use one who was much younger than me, but in my opinion, any protection you can get, at any age is worth a try.  There is very little information on the shields but I found a study in Radiotherapy Oncology 21012 Aug 104(2):161-6  "Reproducibility and genital sparing with a vaginal dialator used for female anal cancer patients.  The results of the test showed a 5.5Gy mean lower dose to the vagina compared to patients without vaginal dialators.  It was only 10 patients, and it didnt compromise their tumor coverage.  Their conclusion(Im paraphrasing) was that IMRT treatment planning, use a vaginal dialator could allow for maximum sparing of female genitalia for patients undergoing radiation therapy for anal cancer.  The article was publihed by Elsevier Ireland Ltd.  Every woman in my opinion with anal cancer should know about this option and maybe the women out there are already using and are aware of this.  I just got the feeling it was not routine....

    Shamayim

    shamayim

    Sure do wish my radiologist would have used the vaginal cylinder on me. I understand there are some things that can be done but I haven't taken the time yet to research.

  • tallorder5793
    tallorder5793 Member Posts: 67
    EvelynB said:

    tallorder

    Did you have chemo at all (while you were having the radiation)?

    Yes

    During radiation I had chemotherapy. It was less than what I had been doing prior to radiation, however. I did smaller amounts of 5fu and taxol, if memory serves.