Stage 1 Grade 1 Recurrence Cancer only Treatable with Radiation - Chemo won't work?

I was diagnosed in 2005 with Grade IC, Stage II endometrial adenocarcinoma.  Had complete hysterectomy and external radiation and declared cured.  Had diagnosis of metastatic recurrence in 2012 with tumor in para-aortic area, scattered lesions in both lungs and a second tumor in my right clavicle area.  I was living in Australia at the time and the therapy prescribed was radiation (a different enough area from first time that radiation was possible) and high-dose hormone therapy...400 mg daily of progesterone (Provera).  At the time, there was some question what was going on in my lungs but the radiation oncologist assured me is was cancer.  For the remaining time I lived in Australia my 6-month CT scans showed tumors shrinking until the time I left in October 2013 I was considered to have a "partial result" which meant that I was on a good trajectory.  Today, I am NED (no evidence of disease) as I continue on my high-dose of Provera.  The US doctors I saw upon my return ridiculed the treatment I received in Australia, one doctor rolling his eyes as if Australia is some third-world country.  I will say, however, the hormone therapy seems to be disfavored in the US.  The only other person I see on this board who has been on it is Helen in England.  So maybe it is a therapy that is more pursue by the British Commonwealth countries.  I now live in Pittsburgh and have a gyn oncologist who also disapproved of my treatment and he sent me for a PET scan and CT in January 2015.  I had mild uptakes in the upper part of the stomach and my breasts.  An upper GI endoscopy showed nothing and a rigorous set of mammograms and ultrasound of the breasts is "probably benign" and will be repeated in October.  But the upshot is NED status and my current doctor had the grace and humility to acknowledge that he could not have expected the chemo regimen that would have prescribed would have put me in any better place than I am now.  Having said all that, what I would say to you is to take your time and gather info and get a second opinion.  I am convinced that there is no reason to treat these situations as emergencies requiring an instant decision in response to one doctor's advice.  You don't say whether you've had your tumors biopsied.  You certainly should demand this.  It may be that your tissue can be tested to learn whether there is a chemo that will not work and one or more that will.  Find out also whether the receptor status of the cancer is estrogen and/or progesterone positive.  If it is progesterone receptor positive you are at least a possible candidate for hormone therapy.  The problem with progesterone therapy is while it is acknowledged that science supports some women and responsive to the therapy, there is no test to determine if it will work for you and there is science that indicates that even if it works, it eventually will not (the thought is that the progesterone receptor status degrades after some period of treatment).  Find out if your insurance has a special cancer care provision.  This may enable you to get a second opinion at a leading cancer care hospital outside of your network.  At my first diagnosis I went to Moffit in the Tampa, FL area and was satisfied.  Even if you can't go out of network, do some research and find out who are the best gynecological oncologists in your area.  Get a second opinion on biopsy, possible surgery, chemo and hormone therapy.  At both my diagnoses, I reacted in panic and did not do things in my interest that, with the benefit of hindsight, I wish I had.  For example, at the recurrence why I did not insist that the second tumor be biopsied I don't know.  I knew that it wasn't going to be radiated because it was being used as a "guinea pig" to see if the Provera worked.  That tumor is now gone, but as one US doctor said we can't be sure it was cancer at all because it wasn't biopsied. He was right.  So, try to calm down and go about getting a dependable diagnosis and treatment options that you can weigh and judge what has the best possible outcome for you.  Best wishes in your journey.  Oldbeauty

Prissy777 said:

Nailed It.

Thanks OldBeauty, you nailed it.  I am panicking like mad.  I am sure I am frustrating my doctor but right now it is all about CURE.  I am not one to believe that only the US has the last say in cancer treatments and what works. I think getting on the Provera was a godsend for you and am glad it was made available.  Yes, I asked  about my progestrin reception and have not heard back.  I had a short consult, on Tuesday, yes you have recurrence and need radiation. 

I agree with you and many of the ladies on the board (Kaleena and Helen) that I need a second opinion.  I will do so and go to Sinai as they are in Baltimore as well.  I have also contacted NIH for a brachytherapy study and they want my records.  I am scanning them in the system tonight.

I live in Maryland but frankly would relocate to anywhere for treatment I feel is more agressive.  I know the protocols are to provide a standard of care, but when it fails you, boy!

Now I want more than the standard protocol and I am letting everyone know.If my currrent gyn-oncologist does not agree with the assessment of more, then I am going to get another one.  It is OUR lives not theirs.

Fighting Mad Prissy! 

 

 

Prissy, if you are in Maryland, also consider Johns Hopkins' Kimmel Cancer Center in Baltimore.  I lived there briefly before coming to Pittsburgh.  There is a doctor at Johns Hopkins named Amanda Nickles Fader.  She is the chief of the gyn oncology practice there and she has a special interest in endometrial cancer.  Also, Dr Sarah Temkin there, but I preferred Dr Fader and I saw them both.  In my experience, it is rare to find a gyn oncology doctor who specializes in endometrial cancer so I wanted to shout out to you about Dr Fader.  Regards, oldbeauty