Confused with 2 different diagnosis and treatment options for 1A - Grade 3

maryv1119 said:

UPSC & Sarcoma - me too
Hi Shelby,

After fighting BC, I'm sorry you have to face it again.

You're one of the first people I found who had two separate uterine cancers like me.

Mine was stage 3C (and of course grade 3 - aggressive) so I wasn't given the option of treatments. I had 5 courses of cisplatin and then 6 courses of carbo/taxol, and also received internal and external radiation.

Chemo is the pits - but it did the job for me. My guess is that you know in your heart how you want to handle this choice. If both Dr's are gyn/onc's who are knowledgable and respected in their field - then I'd go with the recommendation of the one that feels right for you.

If the thought of more chemo gets you upset and puts you under stress - that won't be good for your health either.

God Bless you and heal you.
Mary V.

Shelby54 said:

Thank you everyone for your
Thank you everyone for your insights and ideas. You all provided me with good information and your experiences and I thank you for sharing that. That is exactly what I needed to hear. Sometimes the answer is right in front of you but you don't see it until you clear out the "other stuff". I had to search a little deeper to find out what was preventing me from making a decision. I have told myself I would feel better once I have made a decision and can move forward.

I am 54 years young and plan on being around for another 30 years and know I could not sleep at night if I didn't do everything possible to possibly avoid another reoccurance with cancer and so that does include chemo. I have decided to go with the doctor who provided the second opinion. Both doctors are gyn/oncologists and very well respected in the field. I just think one is conservative and one is more aggressive in their treament styles. I am choosing to go the aggressive route, plus the other doctor mentioned I might qualify for a clinical trial for women who have had breast cancer and took tamoxifin. I am willing to help research in hopes my daughters don't have to go through what I have gone through. My husband is very supportive as he went through the breast cancer with me. I will post again when I know when I will start chemo and what kind and how often it will be.

Thanks again and God bless you all in your journey.

CindyGSD said:

Confused?
Unless I'm misreading your post, it sounds like your doctors can't even decide on what kind of cancer you have. UPSC and carcinosarcoma, though both rare and aggressive, are not the same kind of cancer. First, you need to find out which cancer you have. Maybe a third opinion? I think you might have more treatment options if it's UPSC, because according to what I've read, it is similar to ovarian cancer. There is also a blood test called CA125 that you can use to monitor your cancer which doesn't usually work for carcinosarcoma. Granted since you are in the early stages your chemo protocol would probably be the same, but it worries me that the first doctor doesn't think it's a big deal to even know what kind it is.

That said, this is a tough decision. I know if I would have been given a choice of not doing chemo with my doctor's encouragement, I probably would have happily agreed with him. I applaud your attempts to find out more information. One thing to consider is your grade of cancer. The higher the grade the more aggressive it is.


Take care,
Cindy
Stage 2, High grade carcinosarcoma

carolenk said:

Grade does not indicate aggressiveness
Dear Cindy

I, like you, also thought that the tumor grade indicated aggressiveness; however, my oncologist gave me a BIG explnation on grading.

Grading only indicates how un-differentiated the cells look. The cells can be the highest grade (grade 3) yet slow growing. That's what the gyn/onc said.

I think the TYPE of cancer is a better indicator of aggressiveness but that might now be true either. For ovarian cancer, there are at least 13 different types of tumors some slow, some fast growing. I'm dealing with the papillary serous adenocarcinoma type (much like uterine USPC) which is known for it's aggressiveness. It certainly seemed aggressive when I was diagnosed last year.

I am having a recurrence (more like a cancer re-activation as I never was in remission) yet the tumors at this time are no way nearly as fast-growing as they were last year. The CA-125 was < 10 at the end of chemo in the Spring. The CA-125 started climbing slowly this summer and recently climbed higher at a faster pace--then I had to be treated for a bladder infection.

I'm doing the coffee enemas & Gerson therapies at home & I think the treatments are beneficial but know I will be back in chemo by the end of the year. I'm trying to extend my time off chemo as long as possible.

Lois B. said:

Another sister
Can't believe so many common threads of being two-time cancer survivors.
I had breast cancer in 1993 with surgery and chemo with no recurrence. Then in 2008 I was diagnosed with USPC. I believe it was 1b - I'd have to check my lab report to be more specific. I did the regular route of six chemos and three vaginal cuff radiations.

I'm being followed by a doctor at M.D. Anderson and have been NED since 2008.

Except for a follow-up PET scan a few years back, I'm being followed with CA-125 blood tests and pap tests. I've now graduated to every six months.

Only you can decide which road to take. I was given a copy of some hints to surviving cancer. One of them sticks in my mind - hit it early and hit it hard.

May you have peace with your decision and take one day, one second, one moment at a time.
I pray for a cure for all cancers.

Lois

Hilajoan said:

Carcinosarcoma (was called MMMT) Stage 1a, Grade 3
I had breast cancer op (mastectomy) in March this year and after oncytypeDX had no need for Chemo, but three weeks radiation. Was just getting round to considering 'reconstruction', as they so nicely put it. Now have just had radical hysterectomy (all gone) for Carcinosarcoma (which was called MMMT before its renaming) Stage 1a, Grade 3. Entirely contained in uterus, but am told that radiation would reduce chance of recurrence in the pelvic region by about 50%, though won't stop it recurring anywhere else. Chemo would add 10% to my chances of preventing it recurring systemically - if I have got this correctly. Am still analysing and trying to get to grips with it all. Two cancers, entirely different from each other, in one year - NOT FAIR. Friends and family all very supportive but looks like I'll have to accept the Chemo (Paclitaxel and Carboplatin) and the radiation - seems from postings that radiation is sometimes done in the middle of the Chemo, is that right? It's only 12 days since my op and my abdominal area has not 'settled down' yet. I hate the thought of my whole life having to come to a standstill for months on end. I carried on so well after the breast cancer and I thought they would just remove this one and I could carry on. Apparently not. Looks as though things are much the same in America and England - I am in London (Susan, get in touch?) Thank you so much, all, for your posts. I hadn't realised that I wasn't the only one with an aggressive endometrial cancer - though I guessed. There's almost no research done, and no clinical trials in the UK - probably because it usually only occurs in older ladies (like me/us....... )- and others are more common. Can't bear to think about reconstruction of the breast, now. Do write back.