Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Sophie39 on Tue Oct 07, 2008 12:00 AM
I have been ill for many years...I have had...
endometriosis(16) told it was gone at (19). I assumed I was mis-diagnosed at 16. (3 laporocopys in total)
My gull bladder removed at 21. ( Could not find stones or blockage...but was severly ENLARGED.)
After 3 children delivered by c-section, 10 years I battled menstration problems treated with, hormones (depo-prevera..did nothing but cause a long span bout of depression), failed ablasions.. until severe anemia finally forced a hysterectomy at 36. Pathology showed..uterine cells grew INTO the uterine muscle. NO mention of cancer.
At 38 years old...I developed periodontial disease severe enough to have all of my upper teeth removed resulting in a 15G denture.
Then there is my bladder....my what seems like life long battles of pain, infections, self medicating and blood in my urine.
I have been screaming at the dr's office for years that something is wrong. Last July when I could no longer handle the flank pain, lower back pain, abdominal pain and blood in my urine, ..that caused a melt down in the Dr's office. The F bomb was dropped more than I am certain anyone was comfortable with. Finally instead of a prescription for antibiotics, I got a requisition for CT Scan.
One month after my 39 bday and have been told I have 80% chance that the 2cm tumor on my kidney is RCC or TCC, ... with the information he has so far, he told me to prepare to have the kidney removed. The MRI will tell for sure, along with the bone scan, lung exray and cyscopocy(bladder test).
My family and friends tell me to stay positive..."stop internet researching, let the DR tells me what is what". I want to desperatly...but given our health care system of the hurry up and wait...one symptom at a time diagnosis. And I struggle with the feeling of knowing....how many of you out there where NOT surpised when the dr told you it was cancer? I find it ironic now...at that same melt down, I told the Dr's and staff, that "whenever they get around to figuring out what the f#$#%@ the problem is.. they just remove the f@$%@# part from from my body. Im not going to wait for them to do the same with my kidneys". Bringing me to today..1 week since the Dr. told me this news..I have a tumor. Oddly enough, I am not angry, I am relieved to know there is SOMETHING wrong. Cancer or not..it is inside me, and it shouldnt be. What keeps me up at night is wonder?? .... given my age and the multiple surgeries I have had for unexplainable issues...am I crazy to think this could be a re-ocurring undiagnosed cancer??? I so want put on the I AM FINE rose coloured glasses on and then find out in 2 years from now, I should have been doing treatment differently. After all.. has it not been those same glasses that brought me to this damn tumor. Smoking, fast food, dehydration(I hate water..maybe 3 glasses a week..in the past. Now I have at least that a day.), toxic work enviroments, my overachieving stressful lifestyle... Thx for your time in reading my story. My family and friends refuse to talk about it for fear of a jynx the tests, it is great to vent.
by Trishpm on Wed Oct 08, 2008 12:00 AM
I am sorry for the treatment you have received from healthcare providers. IMHO, iit is inexcusable, but, unfortunately, common.
Ask your doctor about the possibility of "nephron-sparing" surgery (a partial nephrectomy). For a 2 cm tumor, you should not have to lose an entire kidney (depending on where it is located in your kdiney).
There is an email support list specific to kidney cancer. See http://cancerguide.org/kofaq/ .
by Sitora on Wed Oct 08, 2008 12:00 AM
Try to stay positive since the tumor may turn out to be benign like it was in my case. Doctors cannot know for sure if the tumor benign or malignant until pathology test of the tissue. Considering a very small size of your tumor it may be benign and not causing your current symptoms. I strongly recommend to conside cryoblation procedure if you decide to treat that tumor. I had partial nephrectomy and regret to this day having it since now I have new health problems that I didn't have before the surgery.
by golferinpa on Fri Oct 10, 2008 12:00 AM
I know how you feel about dropping the F*bomb in frustration.
I too was diagnosed with a small tumor on my right kidney. I educated myself about possible treatments as I wanted to retain as much kidney function as possible. I switched to a more experienced urologist who offered nephron sparing surgery. I ended up with cryoablation and am very pleased with the result.
The above poster is correct, go to the Kidney Cancer Associaiton website and use all their resources to educate yourself about the disease so that you can make an informed decison about your own care. There is also no reason not to go for a second opinion if you feel the need.
I can tell you one thing for sure. Experience counts when treating kidney cancer.
Best of Luck.
by cancergotme on Mon Oct 13, 2008 12:00 AM
I developed kidney cancer in 2004 and they said i was cured after surgery.It's 2008 and guess who came back...CANCER.I'm 44 yrs old.On nexavar.
by JulieUK on Mon Oct 13, 2008 12:00 AM
Yes, but at least now there is something to go on (ie, Nexavar and the other drugs) - back in 2004 they were still in trial.
Maybe back in the pre-newdrug era, docs didn't want to tell you it could come back, since there was so little they could do if it did. These days it's ESSENTIAL that all Stage III post-neph patients are warned to keep scanning regularly, to spot the first sign of mets. I believe some docs think it's a good idea to put you on the new drugs to stop the mets appearing at all, but others think it can't act when the mets are very tiny, so it's not worth it (and expensive!). With around, I think, 40-50% risk of recurrance, I'd say scan every six months indefinitely, certainly annually. What's to lose? (except our lives if we don't!!!!!!)
by cancergotme on Fri Dec 26, 2008 12:00 AM
My urologist told me my smoking did not cause my kidney cancer.Genetic link.Check into this and maybe you'll quit yelling at you!
I yelled at myself too!Smoked for years and i'm 44.
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