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HELP PLEASE;;;5 YR ANAL CANCER SURVIVOR , PELVIC RADIATED ALSO ABNORMALLY BLEEDING?

TuffCookieHere2
Posts: 32
Joined: Apr 2010

SOMEONE PLEASE HELP ME....I HAD ANAL CANCER 5 YRS AGO, AND AS MOST OF YOU KNOW WHEN THEY RADIATED THE RECAL ANAL CANCER, THEY ALSO RADIATED THE "OUTSIDE" PELVIC ORGANS, WITH NO
CANCER PRESENT, THEY DID IT AS A PRECAUSION...BECAUSE OF THE LYMPH NODES....IVE NEVER HAD KIDS, I GOT ANAL CANCER AT 43....NEVER HAD HYSTERECTOMY BEFORE THE RADS TO PELVIC, I HAVE BEEN FOR THE LAST 2 YRS...EXPERIENCING ABNORMAL BLEEDING...AND NO GYNO OR ONCOLOGY GYNO CAN GET UP THERE.....TO GET A BIOPSY OF UTERUS OR PAP OR CERVIX....IS THIS HAPPENING TO ANYONE OUT THERE? PLEASE I NEED YOUR HELP....THIS IS MAKING ME CRAZY FOR 2 YRS NOW...AND THIS PAST SATURDAY I HAD DARK BLOOD...AND ITCHING...AND PAINFUL, FREQUENT URINATION OUT OF VAGINA
URINARY AREA...DONT KNOW IF ITS VAGINAL OR URINARY...MORE LIKE VAGINAL....THE DARK STOPPED BUT THE ODD ITCHING AND SOMEWHAT PAINFUL URINATION IS STILL THERE..I AM SEEING GYNO THURSDAY....ALSO, IS THE TRANSITIONAL ZONE UP THERE...PASSED THE CERVIX? IF IT IS THEN
THEY HAVE GOT TO CERVIX BEFORE...AND I DONT UNDERSTAND WHY THEY SAY THEY CANT GET TO IT OR UTERUS.....2 YRS AGO....I HAD A SPINAL...AND THEY SAID I HAD SO MUCH SCAR TISSUE THEY COULDNT GET UP THERE....PLEASE SOMEONE HELP ME...ARE YOU HAVING THESE PROBLEMS AND IF SO WHAT ARE YOU DOING TO GET THE GYNOS UP THERE....AND HAVE THEY DIAGNOSED YOUR ABNORMAL BLEEDING AS WHAT?

MY NAME IS NINA, SOME OF YOU MIGHT REMEMBER ME FROM POSTING BEFORE 2 YRS AGO.

I HOPE YOU ARE ALL WELL....WHOEVER CAME UP WITH THIS IDEA TO RADIATE THE PELVIC ORGANS
WHEN HAVING ANAL CANCER ALSO....WAS CRAZY....!ITS CAUSING SO MUCH PROBLEMS.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Hi, Nina-
I am so sorry you are having these problems. I am having problems with late effects of radiation also. The most serious one from my perspective is vaginal.

I, too, can no longer have routine gynecological exams. My vagina has fused from the radiation. This is undoubtedly what happened to you. To date, 2 1/2 yrs post treatment, I have had not had vaginal pain or secretion or anything but I am well past menopause (at least a dozen years). We also cannot have our usual sex. I have tried dilators to reopen my vagina with very little success and no further progress expected via that method.

My biggest concern is the lack of access to my cervix and uterus for routine health testing. I had abnormal cells in my uterus at the same time as they diagnosed the anal cancer. There were no abnormal cells 5 months post tx but no one has been able to get in to see or test since then. My gyn doc has been taking ultrasounds every 6 months but this only catches problems when there is something more extensive than a few abnormal cells growing so I am not happy. I am in the process of decision making about further steps now. Not sure I want surgery - at least not here as this seems to be an unknown problem in these rural parts (Maine). Are you also in a rural area?

You indicate symptoms that sound very worrisome. I am glad you will be seeing your gyn. I would push the issue of testing - minimally an ultrasound and maybe a CAT scan.

Please keep me/us posted! You and I have a similar problem!

Keeping you in my thoughts and prayers,

Priscilla

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hello Priscilla,

Thanks for your reply. May I ask how old you were when you got anal cancer and how long
have you been a survivor?

I am 49, and i was 44 when i got it, so im a 5 yr survivor, I got it 7 mths after my dad died, and, 4 yrs prior, I had breast cancer, but the 2 cancers were not related.

I think its "insane" whats happen. How there was no cancer in the pelvic organs and they
had to? be radiated as a precausion due to the lymph nodes. None of the doctors warned me, that these problems would arise about not getting a cervical pap smear or biopsy of the uterus. I cant tell you the nightmare this has been for me.

The last years each time i see blood or dark blood or whatever sensation down there, I freak out, i have ultrasounds, MRI of pelvic. My gyno and gyno oncologist both gave me a spinal and we went to the OR and they tried to get the biopsy of uterus 2 yrs ago, to no avail, they tried to cut out the scare tissue and they just couldnt get to it.

This is insane! I also have tried with the dialators, the problem is, the doctors should
have given us the dialators right after treatment, not years later. I am not sexually active, not because of this, just because i am not. I also have other disabilities that make me housebound, another thing caused by doctors errors. You have no idea what i go through. I have no siblings..or kids, never married, my dads passed....i have my mom but shes been getting ill also.

Priscilla, there just has to be a way up there. The radiologist MD in charge of the treatment plan told me, hes never heard of such a thing, that hes done this for many many years and hes had women patients who have got there biopsies and paps just fine, i even pushed to ask them if they could....find the women, whos gynos have been successful, so i could talk to them and they wouldnt or couldnt do it...BS.

What these doctors are waiting for is, for when something gets advanced and shows up in an MRI or ultrasound...then they know when its to late, something is wrong, well not in my
book. I have been to a few gynos, one only really took me to the Operating room.

I am a obese girl....i even had a radiologist of over 35 yrs, try to go through the
outside of my body with a needle to get to uterus, but he said, my habitus ( abdomen)
he didnt want to risk it...he could be 1. liable and 2. he didnt want to hit a nerve.
I was to big for the procedure.

So, how do we get up there? There has got to be a way, there has to be...the doctor
who thought of this protocol is in chicago, i forget his name...what a nut, to think
to radiate pelvic organs that had no cancer...my stage was i believe between 1 and 2,
so the doctor feared it traveling to the nodes, that is why he radiated the pelvic
organs....he said, had the tumor been smaller he might not have, lucky me.

I am from NY STATE, Upper Westchester county. if you would like to talk to me via,
my AOL sn....here is is: NiceBrwnEyez160@aol.com...maybe we can talk better one
on one...or in Instant message...and come up with something.

You said, the dialators didnt work? How often did you do them? i was doing it every
night for a few weeks.....i was thinking of getting a vibrator...but not sure if thats
going to make a difference...there was a girl i spoke to about 2 yrs ago..she had
same as us....she had a bf..and did have sex....she said, her gyno was able to get
up there....maybe cause she was sexually active? dont know, also she said, she was
thin....but my gyno said, that doesnt matter, thin or not..but...some doctors
expressed maybe in my case....it does matter.

I am going to gyno tomorrow...same one and i can hear it now....she cant get up
there...the Breast surgeon....said, why cant she put....like a tampon of estrogen
up there to try to open it up....and leave it in me for about 1 week...she feels
thats a big risk....considering i had breast cancer....estrogen receptor positive,
he, the breast surgeon feels diff. You dont know who to beleive or trust.

I have all these odd symptoms after my vaginal bled dark this past saturday, itching,
pain, you name it, the clitoris feels like it keeps moving, its odd. Do you get odd
sensations down there or in abdomen?

We have to do something Priscilla.

Hope to hear from you soon, i am so scared.

Nina

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