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Questions/Warning& Advice Needed! Diagnosed Stromal Sarcoma

Posted , 7 users are following.

erin_d
erin_d

I am 11 days post op-vagional hysterectomy and am having pain while sitting at work, does this pressure and pain go away with time? Or am I doing to much?? I want to also ask opinions and give a warning. I am 44 years old and had an ablation 8 years ago due to heavy bleeding and haven't had a period since. Because of severe back pain my OB/GYN did a vagional ultrasound discovered my uterus was the size of having a 4-5 month pregnancy, along with some fryboids and endometrisis. While removing my uterus my doctor saw areas he didnt like which were sent to pathology and discovered stage 1-2?? early stages or low grade stromal sarcoma. I now have a Oncologhy OB/GYN specialist , scary stuff! Because the ablation and no period, and I had no signs of cancer. For those who have had an ablation as well you need talk to your doctors, because there are few symtems, but one would have been heavy bleeding!! My question is this, my doctor does say that the falopian tubes must come out but it's my decision on the ovaries. Does anyone have an opinion, should I leave them at 44 years old keep one or have them removed ???  I don't know what to do sad(( PLease help! 

1 like, 15 replies

15 Replies

  • kathy59767
    kathy59767 erin_d

    Posted

    Hi Erin,  I am 12 days post vaginal hysterectomy, and also had an ablation a few years ago.  However, the bleeding returned with a vengeance after three years and other procedures made no difference, hence the hysterectomy.  I know absolutely nothing about the other conditions you mention, and hopefully others on this forum will be able to advise you more.  I would talk it through with your doctor re the ovaries, because at your age it might be nice to continue to get the hormones.   However, I don't think you should be back at work only 11 days post op!  I am 49 and still lying down a few times a day to take the pressure off... and you can't do that even in a sedentary job...    Good luck with whatever you choose re the ovaries though.  I'm sure whatever you choose will work out well. x
    • erin_d
      erin_d kathy59767

      Posted

      I wish I didnt have to be back, I'm really struggling with the pain and pressure. thanks for the reply. I hope your feeling better soon as well!

       

  • froggy28
    froggy28 erin_d

    Posted

    Hi. I'm so sorry for what you going thru. I'm nowhere near as scary but have severe endometriosis and have had one op to free organs that were fused and now waiting for total hyst inc ovaries. I'm 39. I've been in total indecisiveness about losing hormones young but hrt seems to be way forward and less of a risk until after normal menopause age. I'm in no way saying this is going to happen to you as we all different but a close friend of mine was diagnosed with cervical cancer and had hyst and kept ovaries. 2 years later she has cancer on ovaries too. We are no Drs and i haven't seen her records but she often says she wonders if she should have had taken out at same time. Hindsight is difficult call though. I'm taking ovaries as endo grows on estrogen and Ican replace on lower dose. That's what my consultant recommends esp as 1 in 3 ladies ovaries pack up within a few years of hyst anyway. I really wish you all the best xxxx
    • erin_d
      erin_d froggy28

      Posted

      Thanks for taking the time I will keep all of that in mind when making my decision smile Good luck to you as well! xxx

       

  • froggy28
    froggy28 erin_d

    Posted

    Just realized you put 11 days not 11 weeks.... Should you be back. I was off 3 weeks after first op and nothing was removed that time! Xx
    • erin_d
      erin_d froggy28

      Posted

      They suggested 2 weeks but I have no more sick/or vacation time left so I had to. I'm probably pushing it?? 
    • froggy28
      froggy28 erin_d

      Posted

      That makes it so difficult moneywise but Dont overdo it or you'll be off through no choice. You can claim stat sick pay which isn't as much but is something if you need time. Depends on how good employer is but you do have rights esp if Dr signed you off. Was that hospital that said 2 weeks or employer ? X
  • phoebewhite
    phoebewhite erin_d

    Posted

    I had a Grade 1A cancer of the uterus last September, was referred to a wonderful Oncology GYN, I had a total vaginal hysterectomy, I had everything removed, however I am much older than you so had already gone through menopause, I can only say what I would do, as uterine cancer can spread to the ovaries then I would lose those as well regardless of the symptoms of menopause that this would bring.

    Phoebe.

  • bridy16825
    bridy16825 erin_d

    Posted

    Hi, I can't believe you have managed to go back to work......please be sure to take it easy!!!
  • judy01992
    judy01992 erin_d

    Posted

    I also had ablation 9 years ago and I am now pre op for TAH tubes, overies and samples to be taken from stomache covering - 23 March
  • Needle
    Needle erin_d

    Posted

    Hi Erin, your message is timely as  I am guessing that this is a difficult decision that I will also be faced with.  I had a myomectomy a couple of weeks ago to remove a17 cm fibroid. For the first time in a long time I felt alive. And then the devastating news 2 weeks post-op, Low grade Stromal sarcoma. WTF! As if I hadn't been through enough. I was so adamant against hysterectomy and now I have no choice. I keep trying to soften the blow by reminding myself that it was lucky it was found. Alas, I'm not there yet. My chances of having kids were low anyways but now they will be non existent. I am concerned that I will feel different and 'less of a woman' after surgery. I have yet to meet with the oncologist and in the meantime, combing through the Internet to see what I can learn. I think I'll stick to this board and hystersisters as the others can be downright depressing! Reviews on removal of ovaries vs not seem to be mixed. So...I totally understand where you are coming from and why it is so difficult to make a decision.

    good luck with this very difficult decision...and strength to us as we go through the process!

    • erin_d
      erin_d Needle

      Posted

      I wish you luck with your surgery, mine went well. I will pass on something to you. For me, the worst thing that I felt post surgery was trying to poop! They will probablay give you a stool softner before you go home from the hospital, but take my advice, I would purchase Colaice and have it at home, as soon as you start your pain pills I would start regular doses of that! I waited way to long and It was a miserable 24 hours trying to gobiggrin I'm not sure how old you are but it sounds like the choice/possibility to have children is gone, and I'm so sorry I know that must be difficult. Please try to be happy that this was caught early, and remember you are a beautiful woman, and very lucky. Like me this could have been mush worse and caught in a higher grade. I go for a CAT scan today to make sure that it hasn't spread, very scary, but if that's clear the next step is the final surgery to remove the rest. XO hang in there, please email if you need anything!
    • judy01992
      judy01992 erin_d

      Posted

      I'm 63 years Ihave grandchildren now. I wish I had the operation years ago I put up with years of bad pain and heavy bleeding it's now it's all coming out.
    • erin_d
      erin_d judy01992

      Posted

      Good Luck Judy! That's my question about doing a total hysterectomy, vs a partial. I'm worried that something's going to come up years from now and I'm going to say I wish I wish i wish ?? Still undecided??
    • Needle
      Needle erin_d

      Posted

      Thanks Erin. I read in another forum that they should be able to tell you if your cancer is estrogen/progesterone receptor positive. If this the case, highly recommended to remove ovaries as this is what fed tumour (and I'm assuming other tumours?) Good luck with your CAT scan and hope all is clear.
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