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It's not cancer. Why do I feel let down? It's not cancer. Why do I feel let down?

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Unread 11-19-2003, 07:10 PM
from one who got a different result

Don't feel guilt about your reaction. You still are left with the questions without answers and sometimes the unknown is the hardest to take.

For two years I have been dealing with this growth that won't go away. It has felt like my feet were stuck in quick drying cement and a car was coming and would hit me or not with nothing I could do to stop it. After my laser in 2002 I got the first positve sign that maybe it was ending. A year later the results were marked as "severe" and I watched the proverbial car come careening toward me again. This time, there was a biopsy and it was cancer, benign, but cancer, so at least I know and can hope that this hysterectomy may end this time of waiting for me.

You don't yet have that relief so you have my empathy and my caring. Accept your emotions, you still have the unanswered questions and all the emotional baggage that goes with that.

Wishing you a definitive answer to your need so you can find some peace and the help you need.

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Unread 11-20-2003, 07:31 AM
It's not cancer. Why do I feel let down?

Dear Hopeseeker and other friends:
I see you are scheduled for your castle visit soon. My prayers go with you and surround you these next (long) days.
I am better. Funny, but an older daughter had the same reaction I did at the news. I am so frustrated at not knowing what is wrong.
To all my dear sisters whose biopsies were positive ~ please understand that I grieve for you. I think its an answer I am seeking - certainly not a "C" diagnosis.
The Dr put me on Provera. Why? I read the possible side effects and they seem worse than bleeding out clots for 3 weeks. At least I'm used to that.

I will continue to seek solutions. Thanks to all of you...
Unread 11-20-2003, 07:47 AM
It's not cancer. Why do I feel let down?


Did your doctor do an endobiopsy or a D&C? If the former, you may want to ask him/her about a D&C, as it is not out of the question that an endobiopsy can miss endometrial cancer. An endobiopsy takes a number of tissue samples from the uterus, but a D&C scrapes the entire uterine lining and is, therefore, much more thorough in the tissue that is sampled. If the endobiopsy does not happen to sample the area where the cancer is located in the uterus, it could be missed.

I seem to recall that there are some old threads discussing just this very issue. If you're interested in reading them, you can do a search. In any event, I would recommend that you discuss this issue with your doctor (is he/she a gynecologic oncologist?). If not, you may want to consider a consult with a gyn-onc just to make sure all the bases have been covered and that nothing has been overlooked.

Best regards,

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Unread 11-20-2003, 08:23 AM
It's not cancer. Why do I feel let down?

I had the endo-biopsy.
I also had the sonagram to rule out fibroids. That showed an enlarged uterus which my Dr said differed from endometrial myoplasia (thickened lining).
I hate this roller coaster. I am a public speaker and scheduling Dr appointments, possible surgery and recovery time - not to mention standing in front of 100 women knowing in 30 minutes I had overrun my Super + tampon and overnight pad- are just so hard to work around. Forget the anemia - I am tired from the worrying and searching for an answer.
I haven't been to a Gyn-oncolgist. I don't even know if we have one in our rural area - but I will do some searching.
Thanks for helping.

Unread 11-22-2003, 03:28 PM

I had a tvh in July to treat adenomyosis. I had great difficulty getting this condition diagnosed, and was even told at one time that the excruciating pain I felt during an exam was from PID. I finally found a doctor who knew about adenomyosis and it was confirmed after the hysterctomy.

I have never felt better! No more cramps (for weeks!), no more heavy bleeding, no more bloating, back pain and discomfort. I was able to keep my ovaries and had a speedy recovery.

I suggest you go and find yourself a doctor better versed in adenomyosis and get yourself treated correctly.
Unread 11-22-2003, 09:14 PM
It's not cancer. Why do I feel let down?

I had the same feeling 3 1/2 years ago after my tah/bso. My doctor said I was fine and sent me home two days after surgery. Two days after that, he called and said he received my pathology report. I didn't need further surgery, but he said I had Stage Ia uterine and Stage Ic ovarian cancer! The uterine cancer was contained within the uterus, but the ovarian cancer needed to be addressed. He then recommended that I make an appt. with the Gyn-oncologist within two weeks. The Gyn-Oncologist was able to get my pathology slides reviewed (felt it was not cancer) and then got a third opinion at another cancer center. The final report said it was borderline, that I didn't have cancer and didn't need chemo. I have been seeing my Gyn since then and everything is ok. The longer it has been since surgery, the more I feel that I will be ok. NOW I have an ovarian cancer survivor telling me that I have cancer. I understand that she feels she is trying to help me, but she is not a physician. I have decided to avoid her because I can do without the negative remarks.
After my roller coaster ride (being told I was going to have chemo and then telling me it wasn't necessary six weeks later), I went to mass. During the sermon, I had tears in my eyes. When I turned around to "give the sign of peace to my neighbor," I still had the tears in my eyes. The lady behind me said she wanted to talk to me after mass. I told her my tears were tears of joy. I told her about my experience after mass.
You have been through a lot of emotional highs and lows and it is natural to show that emotion. Keep up on your medical appointments. I see my Gyn every six months.
Take care.
Unread 11-23-2003, 06:41 AM
It's not cancer. Why do I feel let down?

hey sweetie...listen to your instincts..that type of heavy bleeding is NOT normal..and don't let your doc tell you so...have you had a pelvic sonogram?...or and endo biopsy's...and DC?..sometimes the Dc will not only give you a diagnosis...but slow the bleeding for a while<though it always seems to come least in my experienceI had two within two years but it did help for a bit>..adenomyosis is hard to detect..and if you're that tired of it..discuss having a theraputic hysterctomy w/doc anyhoo... especially with all that dysfunctional bleeding..let doc know it's interfering with your quality of life.... don't stop until you get the answers you is your body..and if your gyn won't listen...try another...I did..after my first one did laproscopic surgery..and just kept telling me pain was due to fibroids...finally after three years of bs...switched...and lo and behold... this doc wasted no time..seems I had endometrial cancer stage 1 gr b..adenoyosis..and an ovarian tumor..which praise God was you have it...the squeeky wheel gets the grease.....hugs..
Unread 11-23-2003, 04:21 PM
It's not cancer. Why do I feel let down?

I have had the sonagram (including trans vaginal). It showed an enlarged uterus and ovarian cysts. Now they're trying progesterone (which I hate). It make me cramp terribly although I have not bled in the 4 days I've been on it. Of course, I also just came off a bleed...sigh.
I really appreciate all of you and your support and advice. Tomorrow I think I'll call and complain some more about the progesterone and see what he thinks of my adenomyosis theory.
I do have one more complication with having a hyster... no health insurance. Does anyone have an idea what one costs? (I realize it will vary - but are we talking 10's of thousands, 100's or what?)
I'm growing weary of the battle. I am a public speaker and filling a pad in 20 minutes is unacceptable.
Keep supporting me. I really depend on all your support and prayers.
Now for a cry...
Unread 12-02-2003, 04:32 PM
It's not cancer. Why do I feel let down?

I don't have health insurance either.

I had my surgery at MCV hospital in downtown Richmond, VA. They have a financial screening that if you are badly enough off, you can qualify for some percent off your hospital bill. Even if you don't qualify for this assistance (I didn't), they will still allow you to make payments.

I could also have gone to a Catholic hospital that would have made financial assistance or billing arrangements, but didn't because if I didn't need a TAH I wanted to have my tubes tied, and the Catholic hospital wouldn't do that operation.

Try looking into teaching or Catholic hospitals. I had a very good experience with MCV.

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