OBG Oncologist want to remove my uterus and ovaries
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Livinlife,
I definitely have much to be thankful for! If this is the beginning of cervical cancer then I definitely am grateful that I had the DNC and didn't put it off and this was found. I shudder to think what my next pap test would have revealed the next gynecologist appointment one year later. I will take my dr advice and get all of the s%&! out, I am waaaaay past childbearing age, have had two babies, so finished with that. My reproductive organs serve no other purpose. I will definitely keep everyone updated on what happens. That is why I post my journey as it happens. Although this is not actually breast cancer, I have taken Tamoxifen for the past 3 years and wonder if this is a causative factor in why this has happened or if this is just bad luck.
I will continue to keep everyone apprised of what happens.
Celand
P.S. Will not be taking Tamoxifen again since I tested positive for a genetic blood clotting disorder, so AI is only medication that I have take.
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Update - started hemorrhaging quite heavily after Nov 10 D & C. Dr prescribed Norethindrone and has slowed down / stopped it temporarily. Oncologist says that she is not worried about my taking this for short term but is more concerned about my blood clotting disorder, so can't take this very long. So now plans have changed, will be getting a hysterectomy on January 19 instead of cone biopsy. Gynecologist concerned that if she did the cone biopsy first and I hemorrhage that there is nothing that I can take safely to stop bleeding. She is taking everything out, so if my BC returns I will take an AI. Dr has been after me for last couple of years to get hysterectomy, now it is happening.
Celand
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Celand I know you've been trying to avoid this - I remember your posts from some months ago when I was brand new on here. It sounds like you're working on the acceptance of all of this as hard as it is.... So much going on for you health-wise so even if truly not your preferred route I hope it helps you from a health perspective! Please keep us posted!!!
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LivinLife,
Yes, this hysterectomy was not something that I had wanted to do, however, I do not want to continue with heavy hemorrhaging either. I must give my dr credit, she absolutely did everything she could to avoid this and left no stones unturned. This is the end of the road, but actually I was trying to avoid this surgery for so long and just dealt with my problems that although I am nervous I am actually looking forward to getting it over with and being able to live a decent quality of life. Many ladies have traveled this path - I am not the 1st one and certainly will not be the last. (My dr told me that she does 2 hysterectomies per week per year. There are 10 dr's in the practice so many others get this done. I am going into this knowing that I am in good hands and will no longer have to worry about bleeding through my clothes with no warning. I did find a website called Hyster Sisters that is an excellent source of information, articles and patient stories of other ladies who have gone through this. Very thankful to have these websites available for source of support.
Celand
P.S. My oncologist and gynecologist did both say that my female problems could have been Tamoxifen induced.
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Hi Celand, I found the hardest thing for me was not being able to bend because that puts pressure on your incision. If you have time put everything you might need up higher. I had to teach my husband how to use the my new washer and dryer. Thinking of you. Let us know how you are doing.
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Hi Celand,
I had total hysterectomy (including cervix) and BSO (ovaries and tubes) just under two years ago. I had laparoscopic surgery. It was a total hysterectomy which includes taking the cervix. With this method of surgery, the uterus is removed through an incision in the vagina. I had two port incisions near each hip and one inside my belly button. My largest incision was in my vagina. Nothing is macerated. They do a pelvic wash to check for cancer cells. Total pelvic rest for 8 weeks. No lifting over 5 pounds for 6 weeks, as I recall.
I have no dysfunction with bladder, bowels or sex post surgery. I do not notice the lack of uterus or cervix. I was post menopausal and on an AI so the ovary removal really did not effect me too much. I had been on hormones my whole life, then HRT for 18 months pre diagnosis. So “menopause” happened for me instantly with BC diagnosis, cessation of HRT and addition of AI. I was one year on AI at time of hysterectomy and BSO.
I read Hyster Sisters as well. I found the weekly surgery groups to be helpful. I read along with the groups that were a few weeks ahead of me, then joined along with my own group.
I would want to do laparoscopic vs open if possible. Also, I would want to make sure the surgeon uses GYN Onc surgical protocol in case there are any surprises in your pathology.
Good luck! I hope all goes well for you!
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Big thumbs up from me for Hyster Sisters as well. I had a rare diagnosis and even managed to connect with a few others with it as well
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Just want to echo Simone's post. I finally had my total hysterectomy in September. About 8 weeks later I was back to my full exercise routine. No problems with sex, etc. If you were to ask me right now, I wouldn't know anything had been done to me. Since my ovaries were removed, I would say I have a few more hot flashes and sleep disturbances at night - but otherwise, I can't complain. Also very happy not to have bi-annual transvaginal ultrasounds any more. I too joined hystersisters. It's a good resources - but be careful that you don't get scared. For every side effect I had that went away in 2 weeks, there were always people posting about on-going problems. So don't assume every pinch or pain you have after surgery is some big problem. Most will go away. Keep in mind that most people who post in there who have had complications are the exception, not the rule. Most who have had a smooth go of things, likely aren't in there much! Wishing you the best on your surgery. I'm sure, like me, it will seem more obvious afterwards that you made the right decision.
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Thank you to everyone who replied to my post and offering words of encouragement as well as your experience with hysterectomy. As of today I am getting things in order at home washing bed sheets, clothes, getting things placed where I don't have to band to get them (I also have a grabbing tool that will come in quite handy). All I will need to do is pack a small overnight bag, I will stay overnight at hospital, hope and pray no complications, and I will have to bathe with special soap that hospital gave to me tonight and tomorrow morning. Also nothing to eat or drink past midnight tonight. This isn't my first surgery and surprisingly I am calm so far. Very grateful for online support groups such as this one and Hyster Sisters - others willing to share their experiences means world to me - I will share mine as well!
Celand
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Uodate - I had my hysterectomy yesterday, I am very glad that this is behind me. Dr. started out laparoscopy but ended up having to open up my abdomen to get my uterus out because it was too enlarged to go through vaginally, so I have a bikini cut, just like a C-section. She didn't want to cut it smaller to take out vaginally just in case a cancer is found. She said this was safest route to take. I was quite a bit groggy yesterday and all last night.
Recovery is a bit rough but with pain medication I am tolerating ok. Also this morning took a couple of walks around hospital hallways and managed to eat breakfast. Also having gas pains. But overall, I am not feeling too bad. Thus far this surgery is not as bad as I I thought it would be. Also have a spirometer for breathing exercise, doing ok with it but it is hard for me.
The dr told me that I should feel better after two weeks but plan on six weeks off. She took out everything, uterus, ovaries, cervix, fallopian tubes. I was ok, now if my breast cancer returns or recurs I will go straight to AI.
Also she told me that they xrayed my abdomen and didn't find anything. So, will find out what pathology discovers in next 10 days. Hope and pray no gynecological cancer. Will continue to keep everyone posted.
Celand
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Hi Celand,
So glad your surgery is behind you. Sorry to hear it had to be open, but better to be safe!
Wishing you as smooth a recovery as possible!
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All that you wrote sounds so promising Celand! Glad your recovery is going well so far even if uncomfortable... hopefully every 2 or 3 days you will notice a little more improvement. this is behind you now! Thanks for letting us know so soon after the surgery too!
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Update with good news - my dr just called me to let me know that pathologist found no gynecological cancer!! Pathology did find some Adenomyosis and a fibroid, which my dr says that both can cause excessive bleeding that I was experiencing.
Hysterectomy was the only option for me because NSAIDS, or Advil, etc was not controlling my pain or bleeding, taking birth control pills (although my dr did prescribe Norethindrone short term which stopped the bleeding when I took it) because of BC being hormone positive plus my blood clotting disorder.
Now, I don't have to worry about pathology results until my 10 day post op appointment! My dr's call made my day!
Celand
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That has to be such a relief Celand! Good for you having this behind you now!
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LivinLife,
Yes, I am definitely beyond relieved! Now, I can focus on healing from open abdominal surgery and getting on with life.- one with no more bleeding! God is good!
Celand
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Great news on the pathology report, Celand:-)!!!!!! That is fantastic! Now you can focus all of your energy on healing. What a relief! I hope you have smooth sailing!
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SimoneRC,
Thank you, I will definitely focus on relaxing, doing as little as possible, except for several short daily walks, to facilitate healing my body.
Celand
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It is now April and next week I will be 3 months post op from my January 19 hysterectomy. I am feeling better than I have felt in years! I didn't realize just how many issues reproductive organs can cause. Everything was healing at my 2nd post op appointment. I am now back to work but still working remotely at home due to Covid, like so many others. The main issue that I am now having is fatigue if I do too much, so I do not push myself past limits when exercising, doing housework, yardwork or even shopping (with my mask on). My dr says that ongoing fatigue can last for a few months following major surgery. Overall, I am glad to have this behind me and hopefully this will also lower my chances of recurrence or new cancer (my oncologist told me this).
Celand
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Thanks for the update Celand!
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I was so hoping you would feel better after surgery Celand! I'm glad that's the case, except for the fatigue- hope that begins lifting before much longer. Thanks for letting us know how you're doing!
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Glad to hear your surgery went well! While I wasn't having any problems that bothered me physically, I have to say it's a relief to not have other organs (besides the breasts) to have to constantly monitor! I think you'll find that the fatigue will gradually go away.
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Fantastic update, Celand! Glad to hear you are feeling so good. Hopefully you will be past the fatigue soon and feeling 110%!
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