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HELP ME PLEASE, ANAL SURVIVOR, CT SCAN RESULTS

TuffCookieHere2
Posts: 32
Joined: Apr 2010

PLEASE SOMEONE HELP ME.....PLEASE HELP ME.......I AM SO SO VERY SCARED.

Hello,

My name is Nina, I have visited the boards in the way past. I am a 2x cancer survivor,
of 9 yr breast and 6 yr anal cancer, neither were related. I am 50. I have other health issues and disabled housebound. Here is the recent activity with my health. For 3 weeks, I been experiencing, bad sciatica and groin hip pain like you wouldn't believe. I had a colonoscopy and rectal exam, both came back normal. Because of the excrutiating pain in hips groin, when going to bathroom ect, the colonoscopy doctor ordered a CT abdomen and pelvic, I have not read the report yet, but he said, there was a ROUND MASS finding but they are not sure what it is, due to my weight? i am about 300lbs, but they did use IV contrast, he said, they arent sure if it is between the rectum and uterus, or uterus and ovary and that I should
follow up with a PELVIC US AND TRANSVAGINAL. Now I am guessing that this pain i been having around hips groind buttocks ect is possibly that mass hitting a nerve. HERE IS MY BIG WORRY.
WHEN I HAD ANAL CANCER BACK IN 2004, AS MOST OF YOU WOMEN KNOW, THEY RADIATE THE OUTSIDE
PELVIC ORGANS....BACK IN 2008, I TRIED TO HAVE A BIOPSY OF MY UTERUS BECAUSE I HAD SOME ABNORMAL BLEEDING...THE...GYNO AND GYNO ONCOLOGIST, COULD NOT, REPEAT COULD NOT GET UP THERE
BECAUSE OF TO MUCH STENOSIS....SCAR TISSUE.....HOW IN THE WORLD ARE THEY GOING TO GET TO THIS MASS I AM WORRIED SICK....IF THEY CANT GET UP THERE???????? THIS IS INSANITY, THE MD RADIOLOGIST WHEN WE DID....ANAL CANCER TREATMENTS NEVER WARNED US OR TOLD US OF THE REPROCUSSIONS....I AM ALSO...A BREAST....CANCER SURVIVOR....ESTROGEN BASED CANCER....SO THEY CANNOT STICK ANY ESTROGEN UP IN MY VAGINAL TO SOFTEN ANYTHING TO OPEN IT UP.

HELP ME, PLEASE, SOMEONE, HELP ME, PLEASE....ANYONE......I AM PETRIFIED....HAVE ANY OF
YOU WOMEN....AROUND MY AGE....WHO HAD THE ANAL CANCER AT ABOUT 44...WHO HAVE SURVIVED A FEW
YEARS NOW....WHO NEVER HAD A HYSTERECTOMY.....HAVE ANY OF YOU GOTTEN ANY MASSES IN THE FRONT IN YOUR UTERUS OR OVARY, SINCE THE RADIATION TO THE "OUTSIDE" PELVIC FOR FEAR OF IT GOING TO
LYMPH NODES......AND IF YOU DID HAVE A MASS.....HOW HAS YOUR GYNONCOLOGIST, GOT UP THERE, WITH ALL THE SCAR TISSUE....AND ATROPHIC........PLEASE HELP ME, PLEASE, IM SO SO SCARED.

PLEASE SOMEONE, PLEASE, HELP ME......I LOST MY DAD A FEW YEARS BACK, THEN HAD THE ANAL
CANCER, BEFORE THAT IT WAS BREAST CANCER...PLUS I HAVE OTHER DISABILITIES, THE DOCTORS
RUINED ME...I ONLY HAVE MY MOM.....I WANT TO LIVE A LONG LIFE, STILL.

PLEASE COULD ANYONE ANSWER MY QUESTIONS....READ MY POST CAREFULLY, HOW HAVE YOUR DOCTORS
BEEN GIVING YOU A BIOPSY OF YOUR UTERUS, OR A PAP....HOW ARE THEY GETTING UP THERE WITH
ALL THAT SCAR TISSUE...AND TIGHTNESS...I HAVE IN PAST TRIED DILATORS, DIDNT WORK...AND
ALSO.......IF YOU HAVE HAD A MASS UP IN OVARIES....OR BETWEEN THE RECTUM...OR UTERUS
WHAT....OR HOW DID THEY GET THERE.....WITH ALL THE SCAR TISSUE????????????????????????

NINA IN NY WHO IS IN PANIC

z's picture
z
Posts: 1249
Joined: May 2009

So Sorry about your health issues. There is one poster on here Sandysp that had tumors in her pelvic region and when they were brought out they were not cancer. So there are such things as benign tumors. There is surgery to open up the vagina and if a ct can see something theres different ways a dr may access the area. I hope other posters will give their input. I hope you will get the answers you need soon.

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hello Z,

Please forgive me, as I am still trying to get use to how to post and where to look for the replies. I know yesterday I answered your post to mine, but can't seem to find it anywhere. I am trying here now again. Thanks for your encouraging words about Sandy, I hope that is the case with me as well. I wanted to ask you, you stated there is a surgery to open up the vagina and if a CT can see something, theres different ways a doctor may access the area??????????? Can you please explain what surgery you are referring to? and what did you mean by if a CT SEES SOMETHING, there are different ways a doctor may access the area??????
PLEASE Z CAN YOU HELP ME!!!!

z's picture
z
Posts: 1249
Joined: May 2009

Your drs should refer you to a surgeon who is able to reopen the vagina. Many paitents suffer from fused vagina openings due to the radiation, and have to have the surgery to reopen them. Now as far as being able to see inside, they use mris for guided biopsys for example with the breasts. There are other ways to access areas, via exploratory surgery. I have no other information for you, other than if the drs are not giving you information you need to reslove your health issues, you might need to get a second opinion.

sandysp's picture
sandysp
Posts: 773
Joined: May 2011

I have not had the radiation treatments you describe yet but I did have a CT scan with multiple pelvic masses. Just had them removed and they were all benign. I woke up feeling better right after surgery. I went into surgery not knowing if the masses were malignant so I do know some of how frightened you must be right now. But please know that I actually feel better and am glad the CT scan showed these masses so they could be removed. I pray your outcome will be like that. You deserve a break!

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Sandy, ty so much for your inspiration and kind words. The problem I have also is, the scar tissue, and them not being able to get a biopsy. The gyno and gyno oncologist, both tried in 2008 to go up there in operating room and to no avail. They cut some scar tissue and still couldnt get to it. I have pain all over the groin, pelvic even when i go to bathroom, but the anal and rectum and colonoscopy all were fine. All other organs are ok. The mass is 3inches x 3 inches round mass. I have to get a new gyno, cause the one i have seems very inconsiderate and non caring..that is same one who tried in 2008 to get biopsy. She seems to be passing buck to someone else, she hopes i find. Tomorrow I am having PET CT SCAN and wednesday, having Pelvic & transvaginal ultrasound. No matter what scan they give, nobody can get up there to get a biopsy, i went to a few gynos.

I SPOKE TO SOMEONE IN THE CT DEPT WHERE I HAD THE FINDING.....HE SAID, THE MD. RADIOLOGIST, PUT ON THE REPORT......THAT THERE WAS, NO DEFINITE CONSTRUCTIVE LESION APPARENT. YET THERE WAS THE 6.9 X 6.5 MASS ( 3 INCHES X 3 INCHES ) THAT WAS NOT CLEAR, OF WHAT IT WAS.

Nobody else on this board seems to be reading my post, how can i get any help, you and Z,
are the only 2, I AM STILL TRYING TO FIND OUT....HOW THE WOMEN ON THESE POSTS WHO HAD THE PELVIC RADIATION....WHO NEVER HAD A HYSTERECTOMY.....HOW THEIR GYNOS ARE GETTING A BIOPSY OF THE UTERUS...( IF NEEDED, AND OR A PAP )?????????????????????????????????????????

THIS IS A QUESTION IM TRYING TO HAVE ANSWERED.

GOD BLESS YOU SANDY, YOU SEEM LIKE A NICE PERSON....I HAVE POSTED BACK IN 2010, NOW
BACK.

z's picture
z
Posts: 1249
Joined: May 2009

Hi Nina, I have had a pabs and I used the dialators to keep the vagina open. You might want to go to the cervical cancer board to see how they have biopsies done. I agree you should definitly get a second opinion.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I have had pap smears and gyno exams. My doctors used dilators during treatment so I have had minimal problems post treatment. If you haven't already you may want to consult with a oncolongist who specializes in gynocology. I'm saying what you have is a tumor, it could be an ovarian cyst which is very common. But a gyno oncologist will be more familiar with dealing with the issues you are facing around accessing the area for a biopsy.
Liz

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hey Liz,

Your doctors were smart and thorough and caring. To have used the dilators during treatment. Thank God you have minimal problems. I have consulted with a gyno oncologist, in fact, back in 2008 that was. Her and a gyno, both went into operating room, cutting scar tissue out and still not being able to get a biopsy of uterus. Back then i was 3 yrs done with the anal treatments and i had been abnormally bleeding, but it was stop and go bleeding. She, the gyno oncologist told me, cancer doesnt act that way, usually you keep bleeding, not, stop for a mth and bleed for 2, then stop for 5 then bleed again, so, she said, dont worry about it, just keep doing the MRI and stay on top of things, to keep an eye out. So, I did have an gyno oncologist trying to help me then. I also went to another back then. If they couldnt get the biopsy then, how will they now, 3 yrs more has gone by. I am disabled with other disabilities, my dad passed, 7 mths after he died, i got the anal cancer in 2004, i live with my mom, no siblings, or kids, and im not married. I have other disabilities, that the doctors ruined...and, when they saw the spot on my breast, never took it out, breast surgeon said he should have, would have not turned to cancer...and, the oncologists, never checked me, or sent me to have other tests, due to the breast cancer i had, then i got anal cancer in 2004. My doctors breast, primary, were floored, and so upset. They felt so bad for me. The mass
they found other day on CT SCAN AB AND PELVIC.....IS 6.9 X 6.5 THAT IS 3.45 X 3.45 INCHES.
THE MASS IS ROUND....BUT A FRIEND I SPOKE TO DOWN THERE YESTERDAY....WHO KNOWS SOME MEDICAL STUFF....SAID....IT WAS TO PERFECT ROUND....WHICH NORMALLY, MALIGNANT ONES ARENT.

HE SAID, THE REPORT AGAIN READ. "NO DEFINITE CONSTRUCTIVE LESION APPARENT" THEY DONT KNOW WHAT IT IS, JUST CALLING IT A ROUND MASS, BUT NO DEFINITE LESION APPARENT???? ALL OTHER ORGANS ON SCAN WAS FINE.

TOMORROW I AM GOING FOR THE FULL BODY PET SCAN....AND WEDNESDAY.....GOING FOR THE PELVIC AND TRANSVAGINAL ULTRASOUND.....I HEARD THEY HAVE 2 NEWER MACHINES....THOSE MACHINES, CAN SEE NOW THE OVARIES AND UTERUS, VERY CLEAR, AS OPPOSE TO YEARS AGO, TECHNOLOGY WASNT AS PRECISE.

WISH ME LUCK ON THE PET SCAN/CT SCAN ( FULL BODY ) FOR TOMORROW....I KNOW THAT SUGAR DYE
IS SUPPOSE TO LAND OR ATTRACT THE...C WORD.....I HOPE IT DOESNT.

LOVE YOU AND GOD BLESS YOU ALL......TY YOU 2 FOR CARING.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

so sorry for all of your anguish. first, it probably is NOT a cancer so try to think that way. i did not have the dilator during tx. (MDA started that after my tx--smart of them). but i , on my own, did request them from the docs because i remembered a small statement in the beginning by the radiation PA that my vagina might close up!!! so I started the dilators about 2 months after tx. my vagina has opened up enough for pap smear. but still painful. i do not know where you live but a good cancer center like MDA knows more how to get to places that are fused by radiation. as someone told you , go to the cervical ovarian uteran cancer site and see if they have ideas. God bless you and PRAY. hope you get some relief. sephie

sandysp's picture
sandysp
Posts: 773
Joined: May 2011

I am visualizing a satisfactory or better outcome for you. I have no idea what you have or are going through. My journey is just beginning, although I lost my uterus to cancer in 1976. So the journey into chemo and radiation is just beginning. I don't even remember what it is like to have a uterus! But since it was always problematic, I didn't miss it much that's for sure. Good luck tomorrow. Please know you are in our hearts and minds when you are in that machine. (I haven't had a pet scan yet either - lot's of catching up to to:-)

Captain11
Posts: 88
Joined: Apr 2011

Good luck on your scan tomorrow. I wonder if all the surgery you had for removing scar tissue has created more scar tissue???? I didn't have the experience that you are having. I had no pain, and because my radiation onc thought I might have a vaginal tumor, she sent me to a gyno onc, who discovered it was just red and irritated tissue. So I didn't need any of my female organs to be removed. We are not doctors, so we don't know what the answer is; only that every one of us is different and we can only hope for the best. I have to believe that there is some answer out there for you; one that will lessen your pain, heal your body, and ease your mind giving you peace. I will keep you and all of us in my prayers. Again, good luck tomorrow. Keep the faith that all will go well. God bless.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Nina,
I typed something wrong. What I meant to type was "I'm NOT saying what you have is a tumor". Forgive me. You probably think I'm an insensitive moron. I've been out of town and catching up. So sorry for the typo.
Liz

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