Hello! I'm new here. I'm 39 years old and a LONG TIME breast cancer survivor. I was dx at 21 and at 22. I have a rare genetic disorder, called Li Fraumeni syndrome that makes me prone to several kinds of cancer.
I'm having a hysterectomy and RSO (I have a complex cyst on my right ovary that needs biopsied), possible BSO on Wednesday. I'm a stressed out wreck, but know it has to be done. I'm having it done with the Da Vinci robot, but because my uterus is so big he is not sure he can get it out whole. He is comfortable morcellating it, but I dont' know if that is a good idea with my genetics. The only way they can 100% be sure that all of my gaziilion fibroids are actually benign fibroids and a not any leiomyosarcomas is to biopsy them. And if he cuts up a cancerous tumor, then the cancer cells can spread and 'seed' my entire pelvis. Ugh. So I have to decide to take the risk or to have him open my abdomen up if he can't get it out vaginally. I hate these kinds of decisions. It was hard enough agreeing to the hysterectomy/RSO in the first place.
With the Li Fraumeni Syndrome the number 2 occurring cancer with our syndrome is sarcoma. Leiomyosarcoma is a soft tissue sarcoma. I know that they are EXTREMELY rare (like 1 in a 1000). My doc said that he would be the farm that they are just fibroids. He is a gyn/onc, but doesn't know too much about my particular mutation. Most docs don't. There are only like 400 cases in the US. What is scaring me is that I personally have talked to 3 LFS ladies who have had uterine sarcomas. UGH. UGH. UGH.
If he has to open me up, the recovery will be so much longer. And he will have to go through my DIEP incision. Any advice? Thoughts? Experiences?
Hi coffee diva, im sorry you have this difficult decision to make. With everything you said if it was me I wouldnt take the chance of the dr cutting it and possibly spreading the cells as you said. I had a hysterectomy and BSO thru the abdomen and the heal time is longer but I thought it went okay. I just had to take pain pills and alot of bed rest. You get a little constipation because of the pain med and possibly because of the surgery but it passes. Maybe more ladies can help you as well to decide. I always like to have peoples opinions then research it and make my decision. I wish you the best of luck and if you have any questions im here *Bea*
What a hard decision for you to have to make at such a young age.
I guess I too would vote for abdominal surgery. When I had my surgery they were so sure it was going to be very early stage, but because of my D&C/hysterscope, the cells were thought to be pushed into the abdominal area thru the fallopian tubes. Because of that, it put me at a higher stage. Anything to avoid spreading those cells would get my vote. I have had the abdominal surgery and for me, recovery has been longer. I have some digestive isssues now, but I think I am still glad they got a good look inside to check everything.
Only you can make this decision...Wishing you the best.
I would opt for the abdominal surgery. I also have a genetic root to my cancer, HNPCC (also known as Lynch Syndrome -- the colon cancer gene).
My gyn was certain I didn't have cancer, and did the hysterectomy laproscopically. The recovery was great, until they confirmed cancer and I had to face a more extensive surgery -- and abdominal cut -- eight weeks later.
You really do want to avoid a second surgery if possible.
Just my opinion, but those of us with genetic disorders really can't take any chances.
You've been through so much to be so young! Surgery of any kind is stressful enough without the added concerns of your situation. It sounds like you are very well informed and have done a lot of research - good for you!! I have to go with the other ladies that have posted - abdominal surgery. I understand your gyn/onc feels he can do your surgery successfully via robot and I know technology is a wonderful thing, but there is something to be said for the "old school" way of the surgeon actually being able to see into the pelvis - especially when there could be surprises lurking about. Yes, recovery time is longer for an abdominal surgery, but with all of the different stories I've read, common complications and issues occur regardless of the surgery type.
My TAH/BSO was my first major surgery, ever (I'm 40). Honestly, my recovery was a breeze considering how major of a surgery this is. I was expecting to be down for the count for 6-8 weeks with severe pain and complications. In reality, I did absolutely nothing (except walking daily) for the first week and a half post-surgery and was able to add more and more activity with each day. Was I back to my normal life at that point? No, but I wasn't useless, either. Did I have bowel issues and abdominal pain? Some, but it was all manageable. But, I had zero incisional pain. I think the things that helped me the most through this is I worked on my core muscles before surgery (I had a month), I ate light and bland for about a week prior, I had a spinal block instead of regular anesthesia, I didn't use my abdominal muscles at all for about 2 weeks or so (it was hard!!), and I wore an abdominal binder post surgery 24/7 for about a month and then at night for another 2 weeks. Oh, I also started chemo two and a half weeks post-surgery!
Anyway, I wish you all the best with your decision, surgery, and recovery! I hope your gyn/onc is right in that it's only fibroids! What a blessing that would be! Please keep us posted...
I'm another vote for an open procedure. I was 37 when I had my surgery (see sig line), and although it wasn't a picnic, it was do-able. I returned to work (part-time) after four weeks. As you mentioned, there is the risk of spreading any possible cancer cells with the other procedure which is no small thing. BTW, I had a bikini cut (just over 6 in) which was actually glued together, and you can barely notice it at this point.
Of course, these are only our opinions and personal experiences, and you have to do what you feel is best for you in the long run.
Thank you ladies so much for your replies. I reallly appreciate it. I just checked in to the hotel and drank my miralax. This is day 2 of a clear liquid diet and I am starving!!!! What kind of evil mideval tortue is this!!!!
My doc is a gyn/onc and we discussed the ability to stage during the da vinci if necessary and he can 100% do that. This surgery #15 for me, so I definitely don't want to add another if at all possible!
I am going to have him do it abdominally IF he can't remove it whole vaginally. I have been stressing out for weeks about the decsion and today it feels like the right one. A longer recovery is worth piece of mind and a better possible outcome should anything be malignant.
I'm glad to hear you decided to be cautious and opted for abdominal surgery if the uterus can't be removed intact vaginally.
For me, the TAH/BSO surgery caused very few problems, and all have resolved, except the scar, which is fading more and more with time. I disliked bending down for a while after surgery so used an "Easy Reacher" to pick things off the floor.