Stage 3b Anal Cancer

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.  

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

Mike

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.

EvelynB said:

Mike

Mike,

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

 

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

Mike

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 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

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