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wierd cancer

patsplace
Posts: 14
Joined: Nov 2010

New to this--so here's my wierd cancer situation (it's a bit long, but bear with me...): I was diagnosed with grade 3 endometrial andenocarcinoma in March 2010, just 10 days after my 52nd birthday. Had a complete abdominal hysterectomy with node sampling, washings, etc--all clean but the cancer had invaded to within 3mm of the outer uterine wall, and there was lymph vascular invasion. Felt great after healing from surgery, then went through 6 weeks abdominal external RT + 2 brachy treatments that ended mid-July. Somehow made myself go in everyday for all of that. In the midst of the radiation had a biopsy of my thyroid as the CT taken in April prior to RT showed possible thyroid problems and I was in fallout range of I-191 as a child. Thyroid biopsy showed Hurthle & follicular cells, but so far no cancer. By the end of August, though like others just beginning to deal with the emotional mess, was beginning to feel pretty good again. BUT...

In early September, I found a lump on the top of my pelvic ridge in back. My primary physician was immediately concerned. Turns out this showed up on the April CT but was not commented on because it was too small (about .5 cm then) and in the wrong place to be a met. It took until Sept. 27 to get the biopsy done, and then path read by local and other big cancer center--but both inconclusive. Excision of the lump, which by then HURT, October 21. PET day before surgery showed a little activity at the thyroid and the tumor lit up like headlights--it had sextupled in size since April--but no other hot spots. Took two reads on the excision to come up with the decision that it is/was a met of the endometrial cancer.

So the summary is this: I have grade III, Stage IV endometrial cancer whose behavior, as one doctor put it, is "bizarre". Recommended treatments are RT to the surgery site (at least it would not involve any organs) and 8 infusions of doxorubicin (though the drug of choice is not certain yet). Will get at least one more opinion on the excisional pathology (would like to have two that agree!), and will get a second (and maybe a third) RE the currently proposed chemo. Through every step of this most of the medical staff have been great, though several need training in what to say to people in crisis, and there were numerous bungled blood draws and nurses too busy to do anything but hand me my discharge papers and say call if you have a problem. I do ask for copies of all reports--even got a copy of the April CT on disc--when the docs see me coming they get ready for lots of questions.

I am not in anyway afraid of death (far more afraid of radiation, though I know that makes no sense), and am far more unhappy when having to deal with doctors or hospitals than thinking of my inevitable demise. I will NOT go through these difficult treatments just to grab onto every possible minute of life, but will consider treatment that would gain me a significant amount of time (significant defined for me as years more than the treatment and its recovery take--being given a year of life when that year will be miserable seems foolish). The docs are guessing on the chemo, basing on breast cancer lumpectomies. No one has any good predictors--all studies of advanced endo cancer are based on multiple mets to organs; I had a solitary (but exceedingly aggressive) met to the periphery of the pelvis.

Would love to hear from anyone who has any similar experience or knows of anyone with anything similar.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Am I correct that you haven't had any chemo yet? Usually with a Grade 3 cancer 6 rounds of adjuvent carbo/taxol chemo after surgery is pretty routine. Was your recurrence within the radiation field? I'm guessing not if they are recommending radiation to you again as they rarely re-radiate the same area, although my radiation oncologist did say it can be done.

I think all cancers are pretty crazy, as individual as snowflakes, each unique to each of us. I also have a grade 3 endometrial andenocarcinoma, originally diagnosed as UPSC in fall of 2008 but after a second review of my pathology slides in the fall of 2009 determined to be Grade 2-3 endometrial andenocarcinoma. My cancer recurred in a lymph node in my armpit in November 2009, a recurrence spot so rare for uterine cancer (.03% of the time) that they thought it might be a 2nd primary cancer. A needle biopsy confirmed that it was a recurrence of my endometrial cancer.

(As background, I had my big hysterectomy Oct. 2008; did 6 adjuvent carbo/taxol chemos; 28 adjuvent rounds IMRT pelvic radiation; and 3 adjuvent brachys, finishing up my initial treatment protocol in March 2009. For my recurrence in November 2009, I did 17 weekly rounds of taxol and 3 rounds of Doxil so far, and had a brief 3 month remission after the 1st 10 rounds of weekly taxol. I had my latest Doxil chemo Thursday and will be getting a CT/PET the week after Thanksgving to find out what is making my CA125 continue to rise even while I'm on chemo.)

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

My Doc is 'excited' about my progress, feels ' we' have a chance for a 'cure' ( though in my condition, Stage IV-B Endometrial Clear, that is  time delimited too) and he seems not so sure if it a good idea to keep me on Chemo as 'maintenance' or wait till 'relapse'. 

CT, Bloods reasonable after two transfusions two weeks ago, and Ca 125 = 6.2, Gyno Ultrasound WNL, so he is recommending changing protocol from six rounds of weekly Taxol and 1 x every 3wks Carboplatin, to ending after four rounds I.e. Four carboplatin and sixteen taxol in all, and doing the next 2 rounds with Doxil / Carboplatin every 3-4 weeks.   I'm  beginning to have signs of neuropathy from Taxol.  Spoke to him regarding 'tried and true' protocol of six rounds versus four, and he said my weekly dose and response to Taxol and once every three weeks Carbo since Aug. 15th, three months of treatment , has proved itself and before neurotoxicisity from taxol gets worse, or my body builds up anti/immunity to it, I should switch to a one every four week Doxil and Carbo mix.  After this go on an anti hormonal protocol. He feels that the six carbo/taxol protocol is an Ovarian model, and that for me as a Uterine IV-B case, there isn't so much data, really more like a desert, of research.

He is not an Avastin fan!

What do you more experienced Warriors think?  

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was concerned that my chemo oncologist has decided that single chemo drugs, (given alone and not given in combination with a 2nd drug) given sequentially, is the best option for me personally since my recurrence. I went to Fox Chase Cancer Center to get a 2nd opinion, and they concurred with that strategy for me. I had delays and needed blood transfusions for each of the last 3 of my initial carbo/taxols, and so they are very protective of my bone marrow's ability to keep my blood counts at safe numbers so that I can stay in treatment. But everyone is SO very different. Besides the 6 carbo/taxols, I had 17 weekly taxol infusions and never had a problem with nueropathy from taxol. Oncologists need to individualize everyone's treatment; there simply is no 'one size fits all' after you have a recurrence. The individualized treatments are very isolating, and I find myself missing having a group of women getting the same treatments as I am, like I had in the beginning of my cancer journey. And yet I SOOOOOOO hope no more of you join the ranks of "those of us with recurrences."

patsplace
Posts: 14
Joined: Nov 2010

Sounds like all the docs are guessing on us SIV-G3 folks. My research when first diagnosed, and the info from the docs last spring, indicated against chemo (no invasion in nodes, tubes, ovaries or vagina, washings clean; they thought it had been contained in the uterus.) I talked in September to the radiologist that had read the CT taken in April prior to the abdominal RT; he is he one that called the location of this most recent recurrence "bizarre" & "exceedingly rare", kinda like your nodal invasion in the armpit--a <.03% recurrence! Interesting that they are using the CA125 on you--no one here has suggested that and when I ask they say it's too unreliable to be of any good...part of why I question the chemo--I have no visible mets now, there is no tumor to shrink (though I'm not kidding myself that they won't be likely to return), and no reliable marker. How often do they put you through a PET?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My oncologist uses CT/PET fusion scans every 3 months to gauge the effectiveness of my current treatment in case we need to switch gears and try something new. My insurance always shells out the $22,000 they get billed each time I'm scanned, but I am sure they will raise my rates upon renewal again based on the $330,000 in claims I've had this year even with no surgeries. CA125 has been a fairly reliable marker for me, spiking when I had my recurrence, although it was in the mid-40's the last time I was in remission with a NED scan. Now that it is hovering close to 200 (190 2 weeks ago; 181 last week) I am HOPING it is not indicating disease progression, but emotionally preparing myself for bad news at my next CT/PET I'm to have the week after Thanksgiving. My oncologist doesn't treat on a rise in CA125 alone, but he does use the number to justify the scans to my insurance.

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