Damn it all. I want a cancer manager, someone like a life coach or a personal manager who can explain this whole cancer thing to me because I feel I am being cheated of information.
Today I went to see my gyncaecologist. Routine annual check. A week ago my one sister went to see her gynae and he said, because of her age, she needed a special kind of pap smear test. She said it was so awful that she treated herself to a chocolate afterwards as consolation/comfort eating.
Anyway, there I arrive and lo and behold, once he hears I am on tamoxifen (I wasn't the last time I saw him), he tells me that it can cause thickening of the endometrium and therefore endometrial cancer or various pre-cancer stages. So I need this test which is inserted right into the uterus.
Now my sister and I are still trying to work out if we had the same thing, as my doctor seemed incredulous that she would need such a test if she was not on tamoxifen. Whatever. Mine was called a Z-sampler although I am battling to find info on it on the Net. Essentially it is an endometrial biopsy. 'Cos that is what it says on my medical aid invoice.
And essentially it was agony. Ok, only about 4 isolated seconds of agony, but agony nevertheless. And for quite a while afterwards, I felt quite overwhelmed by it all. Now that sounds dramatic but really, when I arrived back at the office, the office manager asked if I was ok. I didn't feel it.
Something I read about it on the Net, cannot remember where, said that 5% of women find it very painful. Like period pain, said the gynae. Like period pain, said the doctor too. But I have never really had period pain so it's not a good comparison for me. And for a while afterwards - as in an hour or so - the area around my tummy felt funny, but that is just my being hypersensitive cos that feeling was more of an awareness than pain.
Now I had read that tamoxifen can cause endometrial cancer. But had no idea I had to endure this agonising procedure, which I have to repeat in six months, although an article I read on www.cancer.org the american cancer association site said repeat testing is not necessary.
What I did also find on the Net was this horrifying article on the side-effects of tamoxifen on the american cancer association site. Why did nobody explain all this to me? Is it because I did not ask?
I live in Johannesburg, South Africa, where I was diagnosed with breast cancer on Thursday January 15 2009. This is my journey with cancer and other musings as surveyed - initially temporarily hairless - from under my hats.
Good grief!! I am scheduled to visit my ob/gyn on Monday. I am not on Tamoxifen (had my ovaries removed in Sept 09 - I had bc in 2009 including bilat. mastect. with chemo. I also tested positive for the bc gene BRAC1 so bye-bye ovaries. I'm 41 and now in menopause!) Anyhoo, I'm on the post-meno equivalent called Arimidex. I wonder if I will endure the same. I'll check with my dr. Best wished - I stumbled upon your blog as inspiration for lauching my own site/blog. I've invented a surgical drain pocket - Pink Pockets - to hold those nasty drains. I'm marketing to patients, drs. My group of ladies that have used them say they are fantastic. I hope you are well. Thanks for sharing your experience. What great timing for me to read.
ReplyDeleteDiane@pink-pockets.com
www.pink-pockets.com
My mother was diagnosed with breast cancer about 4 years ago and used a "non-mainstream" treatment (it's scientifically oriented just not the usual run-of-the-mill type of treatment) to cure herself.
ReplyDeleteSince then both her and I chose to learn and use this method to help ourselves and others as it was such an inspirational process and experience.
You can contact me via Twitter -- @mandalareopens -- if you would like to find out more.
Best of luck!
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ReplyDeleteDiane, Good luck with starting your blog. And Matthew, thanks, but I seem to be fine now. Thanks anyway.
ReplyDeleteHi...I'm writing from Canada. Just read your posting on the Z Sampler..sounds very similar to what I had earlier this year. I had been in chemically induced menopause for over 8 years and then had my ovaries removed because a tumor had grown on one of them. That was Dec 08. In February of 2010 I came back from a winter holiday and the night we flew home I had very unusual discharge that a menopausal woman should NOT have! (brown, then bloody, then like mud over a couple of days) I immediately informed my nurse and saw my oncologist who wanted me to see the gyne-onc for a pelvic exam ASAP. The gyne-onc's nurse is an angel and warned me in advance that he would likely be taking some biopsies. I was surprised it could be done right there in the exam room...I don't know why, guess I thought it was more "surgical" than it actually is. I braced myself for pain but didn't really feel much when he was taking the biopsies (I think about 8 little chunks were taken out). However, by the time we were walking out to the car I was NOT feeling good at all. I dropped my husband off at work and wasn't sure I could finish the drive home. After several minutes of deep breathing with the windows down (on a freezing Canadian winter day!) I drove home in extreme discomfort with all four windows down! I got home and laid on the couch with a hot water bottle on my belly. I felt tender and sore/crampy for the remainder of the day but felt nothing after that. The biopsy results came back positive for cancer. They're too small to tell what KIND of cancer so I decided to just go ahead and have a hysterectomy. Turns out it was the same breast cancer I've had for almost ten years. I was diagnosed metastatic in July of 2000 when I was 35. A CT scan before the surgery also detected 2 new tumors in the lining outside the liver, one new large tumor inside the liver and numerous areas of my abdomen (lymph nodes), as well - a patch of cancer growing where my ovary used to be!! I recall the gyne-onc saying he had to "tease" the ovary away from the abdominal wall. Obviously some cancer cells remained and multiplied! I started chemo in May and just had (hopefully) my last chemo 2 days ago.
ReplyDeleteI'm so glad you wrote about this. Women who are on Tamoxifen need to know that it can cause endometrial cancer and that they should be checked. I'm lucky that my cancer wasn't a secondary (endometrial) but was still the original cancer. I would gladly put up with that pain for one day to determine what's going on. If any of you girls have unusual/different discharge than normal be SURE to tell your oncologist!
Excellent blog by the way!
Lisa
Lisa thanks so much for your comment. Now I have a question in turn: why is the same cancer returning better than a secondary cancer? Is the initial cancer in a different site, not a secondary cancer?
ReplyDeleteI was kinda overwhelmed by my experience at the gynaecologist as I have been on tamoxifen for a year and my oncologist had not said anything about needing such a procedure. Only seeing him in about a month. Waiting for test results from Friday's procedure.