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LSH Surgery on 8/16 - feeling sad and alone
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07-25-2011, 04:27 PM
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HysterSister
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Posts: 5
Hysterectomy: August 16th, 2011
Surgery Type: LSH
Ovaries: Removed both
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LSH Surgery on 8/16 - feeling sad and alone
Hi there, I’m new the site, been reading for a while but wasn’t sure what to post until now. My LSH with salpingo oophorectomy is scheduled for 8/16 and I’m feeling more and more anxious and alone every day that passes. I’m not sure what I am even looking for, I feel like I am doing everything I can to prepare and that I’ve made the “right” decision to have this surgery but it doesn’t make it any less isolating or confusing. More than anything I’m just looking to connect with women in similar situations so I don’t feel so alone…here’s a little bit about me:
I’m 35 years old and I found out in January that I am BRCA1 positive (high risk gene for early onset breast and ovarian cancer in case anyone is not familiar) I knew my grandmother had OVCA when she was 35 and BC when she was 37, died at 40 but I wasn’t aware about the rest of my family history until my father starting to uncover in the months after my positive gene test. It seems like there were dozens of women in the family that had BC, OVCA and uterine cancer in their mid to late 30’s and most died by the time they were 45. So I have what most doctors would describe as an “incredibly strong family history of early onset, aggressive cancer” – to me it just felt inevitable that I would get one or more of these diseases sooner rather than later so I decided to take action.
In early may I had a double mastectomy with DIEP reconstruction at The Center for Restorative Breast Reconstruction in New Orleans. My surgery in August will be phase 2 of my breast reconstruction as well as my LSH/BSO. I’m trying to cut down of how much surgery I need to have by combining them but I’m starting to feel very overwhelmed. I’ve been active on sites likes FORCE and breastcancer.org but they member there are more focused on breast reconstruction and oophorectomy rather than hysterectomy. Most people there say stage 2 is a breeze but I don’t think many are combining it with hysterectomy—I also don’t think that many are as young as I am. I decided on an LSH because I had a history of painful fibroids as well as some family history of uterine cancer—I figure while they are in there it’s best to get everything they can. I also like the idea of not having to do full HRT if I don’t want to.
I’m trying to be as prepared for this as I can be but I still feel very alone and sad. I’ve been talking to a therapist (who is also BRCA+ and have breast surgery and hysterectomy) so that has been helpful but it’s not really enough. I feel very estranged from all of my friends, most of whom just had babies this year and have moved onto a new phase of their life. I don’t want children, my husband and I never had, but I can’t help but feel very, very alone. Like there is some club that I am not a member of, that no one will understand or accept that I still want to be a part of their lives even though we are all on different paths.
I’ve had my hormones baselined and on Friday I’m going to see a bio-identical hormone specialist who will help with hormones after the surgery. I feel like I’m doing everything I’m supposed to do, but I just feel so lonely and sad…and a little bit lost right now. It’s all not helped by the fact that my husband and I moved from NY to CA about 8 months ago and I don’t have many friends in our new home town—all these health issues/surgeries have really preventing me from connecting with people when that is what I feel I need the most right now. Any advice ladies?
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07-25-2011, 05:28 PM
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HysterSister
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Posts: 286
Hysterectomy: August 16th, 2011
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: LSH Surgery on 8/16 - feeling sad and alone
I'm sorry, I have no advice for you. You really have a lot on your plate and I think what you are feeling is very normal for your situation. Do you have family that is supportive? Have you tried looking for groups where women are going through the same sorts of things that you are where you can meet and discuss different options and procedures? I know meetup.com seems to have a group for everything, that might be a good place to start. This webiste has been a wealth of information for me, I never thought at 40 I'd be having all of the issues I've had and be having a hysterectomy next month. I am an open book so most of my friends know what is going on and have been so supportive of me and my family. I have to say I'm surprised by it, they have been more supportive than my family, which is kinda sad I guess but I never expected much from them anyway. There is a cancer section on here so you may want to head over to that page and check them out as well. Good luck on your journey
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07-25-2011, 06:42 PM
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HysterSister
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Posts: 159
Hysterectomy: July 11th, 2011
Surgery Type: LAVH
Ovaries: Removed both
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Re: LSH Surgery on 8/16 - feeling sad and alone
I cannot say I know exactly what you are going through, but I have a pretty good idea. I am 33 and an uninformed BRCA negative, so I don't have the gene, but I'm still at an increased risk due to family history. I just had an LAVH BSO 2 weeks ago for medical issues as well as prophylactic. I definitely get the alone part, I move a lot with my job so I have a few close friends, but none live in the same state I do. My daughters are young and know nothing that is going on right now. They went with my dad for the summer to have some fun in the country. During my recovery I have had time to peruse the internet (probably more than I should) however I did come across the FORCE website (Facing Our Risk of Cancer Empowered) if you haven't already, it might be a good place to check out. They have a message board as well and has a great wealth of information for individuals just like us. It sounds like you are definitely trying to cover all your bases on things you can control. No matter what, just know you have friends here who will listen to you no matter what you're feeling. If you would like to talk more, feel free. Hang in there!
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07-25-2011, 06:56 PM
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HysterSister
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Posts: 18
Hysterectomy: August 4th, 2011
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: LSH Surgery on 8/16 - feeling sad and alone
I am so sorry for all that you are going through. This is not easy for us who are older but I can imagine that there are so many worries and feelings that come with someone of your age facing so many losses and surgeries. I hope you are able to find support here even if it is a way to vent and have people to listen. Sending thoughts and prayers your way.
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07-25-2011, 07:19 PM
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HysterSister
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Posts: 6
Hysterectomy: July 5th, 2011
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: LSH Surgery on 8/16 - feeling sad and alone
Dear HysterSister,
You are really being proactive in your health which means you are that much ahead of your relatives who probably didn't have all the medical surgeries and treatments available now.
No where near the things you have faced, I did have a hysterectomy and vaginal repairs 3 weeks ago. Just before the surgery I was feeling a lot like you were. I logged in here and found that I wasn't alone. There are a ton of emotions going on. Allow yourself to cry and to mourn, then wipe your tears, and continue to love yourself. You are not alone! Be sure to log in during your recovery and let us know how you are.
Be prepared to be tired and follow all the post op instructions. Know that being fatigued for a while after words is normal.
You are an amazing woman and your HysterSisters are here to listen!
Nancy
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07-26-2011, 08:47 PM
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HysterSister
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Posts: 5
Hysterectomy: August 16th, 2011
Surgery Type: LSH
Ovaries: Removed both
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Re: LSH Surgery on 8/16 - feeling sad and alone
Thanks so much everyone for your comments and for your support. My family is marginally supportive but I just don't think they really understand what I am going through. My mother is more concerned about how the stress of all the surgeries affects her health and her sleep situation rather than mine. I just called her and she spent the majority of the time on the phone telling me about all the great vacations she has planned for next year, so she is in her own world. Can't say I'm very surprised. I've tried to get involved in groups in person like FORCE and Bright Pink but the former isn't very active where I live and seems to be predominantly older women who have had cancer, the later is filled with women younger than me who are only doing survelliance at this point. I've met some very nice people, but I feel like I'm stuck in some weird limbo and I really just don't fit in either place. Most of my friends are 3,000 miles away and consumed with their own lives and having babies and I just feel so seperated from everyone both in distance and in what I am going through. I feel like everyone just wants to you have surgery and "get over it" because that is easier for them to deal with. Well I'm still not "over" my mastectomy from a couple of month ago and I think it's going to be a while before I am over my hysterectomy. I'm sure it will be fine, just hate feeling so lost and alone and wish I could find someone local to talk to over coffee - is anyone in Northern CA?
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