Change in treatment plan carcinosarcoma MMMT

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  • Editgrl
    Editgrl Member Posts: 903 Member
    #62
    Cindyr941 said:

    diagnosed MMMT 11/10/16

    Hi all, I'm new here.  Trying to follow posts in this thread, in search of most recent, however I see nothing newer than Feb 2016???  Posts don't seem to be in date order.  I just had my hysterectomy last week with removal of ovaries, omentum & lymph nodes.  Waiting for results of biopsy, especially lymph nodes and the ONC GYN will go over staging, grading and plan of care.  Would love to hear from any of you who have had good (or bad) results from various post-op treatments.  Wishing all of you favorable long-term results.  - Cindy

    Welcome, Cindy, and yes, this is an older thread.

    If you do a search of carcinosarcoma or MMMT, you will find some other threads and posts that are more recent.  Also, I might suggest that you start a new thread of your own.  It's much easier to find and follow threads that don't have as many posts.  Posts are not necessarily in chronological order because some posters respond to individual posts within the thread.

    I am still here after undergoing chemo with  6 carbo/taxol infusions and 3 brachytherapy treatments.  My last scan in October showed 2 very small suspicious areas within two lymph nodes.  Right now, I am working with a naturopathic oncologist and will have a follow-up scan at the end of January.  I am feeling good with lots of energy.

    I hope you are recovering well from your surgery.  Right now is always the hard part, waiting for the pathology after surgery and wondering what the proposed treatment plan will be. Once that plan is in place and there's some path forward, you'll feel much better.  One thing I'll recommend is to get copies of all of your pathology reports and scans.  They'll come in handy to have for your own records and should you ever decide to get second or third opinions in the future.

    Again, welcome to the board.  You'll find lots of support and information here and it's a fine group of smart caring women who are generous with their time and experiences.  

    Chris

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #63
    Cindyr941 said:

    diagnosed MMMT 11/10/16

    Hi all, I'm new here.  Trying to follow posts in this thread, in search of most recent, however I see nothing newer than Feb 2016???  Posts don't seem to be in date order.  I just had my hysterectomy last week with removal of ovaries, omentum & lymph nodes.  Waiting for results of biopsy, especially lymph nodes and the ONC GYN will go over staging, grading and plan of care.  Would love to hear from any of you who have had good (or bad) results from various post-op treatments.  Wishing all of you favorable long-term results.  - Cindy

    Hi Cindy, I agree with Chris

    Hi Cindy, I agree with Chris that it may be easier to follow if you start a new post.

    I am so sorry to hear of your diagnosis. I recall being in your shoes just last year. It is a very scary time but please know that you will have all the support that you need from us. How are you healing from your surgery? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal.

    The stage of the MMMT will be very important to know. Mine was stage 1b. The staging will help determine your treatment plan. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May and had a clear CT scan showing no evidence of disease or "NED" right afterwards.

    My last CT scan was a little less clear as it found a mass in my chest near my thymus gland. I had a PET scan to try to determine if the mass was related to the MMMT and it seems to indicate that it's benign but my gyn-onc has now referred me to a cardiovascular-thoracic surgeon for another opinion on whether it should be biopsied or just observed.

     

    In addition to getting copies of all of your records as Chris recommended, you may want to also consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to my recordings again after the initial shock of the diagnosis wore off and realized that I had missed some very important things the gyn-onc had said at the time.

    Good luck to you as you move forward with treatments. You can do this and we will be here to support you! Wishing you peace and strength, Kim

  • janaes
    janaes Member Posts: 799 Member
    #64
    Hi Cindy, these two wonderful

    Hi Cindy, these two wonderful ladies are right and so helpful.  They are the ones who walked me to where i am now.  I had my hysterectomy May 2, 2016 and was diagnosed with MMT stage 2 grade 3.  I started chemo  in June and did therapy 6 times once every three weeks.  I will be honest it was tough but i did make it through all my tratments.  I was done with my three bracytherapy appointments the first part of November.  I am feeling really pretty good.  Not compleatly back to the way I was befor surgery but really doing pry good. 

    Good luch with all you decide to do.

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    edited December 2016 #65
    Txtrish here.  My Dr works at

    Txtrish here.  My Dr works at UTSW in Dallas which is a NCI regonized treatment facility.  They follow the NCI guidelines and she told me the same thing 5 years ago.

    I asked her because everyone on here was having chemo the radiation then more chemo and I thought I was not getting the best treatment.  I was very concerned.  She told me the same thing your radialogist told you that per NCI they had found that their was not enough improvment over just chemo alone vs chemo and raditiona so why put a person through it.  Especially after you had surgery to remove all the cancer that they could find so there was not a point that they could beam the radation on and to do the whole pelvic area did more damage than good to the other organs in the body.  Best of luck in your research and discussion.  trish

  • Cindyr941
    Cindyr941 Member Posts: 3
    edited January 2017 #66
    diagnosed MMMT 11/10/16

    Hi there, thanks for the replies.... I have have since received my post-op appointment with a Stage 1B and grade 3. No evidence of cancer outside the uterus.  6 lymph nodes, cervix, omentum, tubes and ovaries all clear.  They also did the peritoneal washing which was all clear.  So here's the glitch - my ONC GYN said chemo not necessary, just recommended radiation of the vaginal cuff area and observation.  I saw the radiology oncologist on Friday.  She is very good and after going through my records told me that I don't need radiation.  She showed me the NCCN guidelines for uterine sarcoma and for stage 1 they recommend "observe OR consider systemic therapy."  So she is referring me to another oncologist who will evaluate to determine if chemo is recommended.  I am sure it will be good to get a third oncologist's opinion, hoping there will be some concurrence in the plan of care.  I don't want to think I'm getting off scott-free but at the same time would definitely go through chemo if it would improve my prognosis and keep recurrence at bay.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #67
    Editgrl said:

    The plot thickens

    Just got a call from my gynecologic oncologist.  While the radiation oncologist is saying no external radiation, the gyn/onc is strongly in favor of it. He is recommending a second opinion from another radiation oncologist which I already have scheduled, and was very much in favor of me getting an outside second opinion as well.  He is also going to present my case at the next sarcoma cancer tumor board.  Nothing is ever cut and dried with cancer, is it?

    Same situation

    I had the same situation.  My gyne/onc definitely wanted me to have pelvic radiation but my radiation oncologist was against it.  He indicated that the treatment would cause more problems than if I didn't have it done.   The reason being is that I scar so much.  The scarring would cause a great deal of problems for me as I was already pretty scarred up from having endometriosis.   The came to a middle where I only had brachytherapy (3 x).   They do not know what the long term effect of radiation is so they cannot tell you that.  It can cause scarring and blockages.   And because of all of my surgeries, I have been getting more scarring too.  I did end up with a block ureter by my bladder (which my urogolgist indicated was from the brachythereapy).  I had to have a stent in for over a year until last December when I have a ureter reimplantment surgery.

    My best to you.

    Kathy

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