Heading into surgery in October
Been a long process but I finally have my surgery scheduled for the end of October. I will be getting a prophalactic double mastectomy and a hysterectomy. I will have the one surgeon working on my breast, the plastic surgeon to put in expanders at the same time and the OB GYN doing the hysterectomy. All three surgeons have worked together in the past on patients so I feel confident I am in good hands. It was hard to decide what I wanted to do, but I do not feel safe waiting to do two different surgeries. I am scared, a little scared they will find something unusal as my previous OB GYN messed up many patients according to my new doctor who had to fix many of those. I am BRCA2 positive and 43 years old. Much of my moms family has had cancer, younger than me even. The Oncologist I saw recommended I get these procedures done due to extensive history and highly recommended this team of doctors. One of my Aunts tells me not to get them both done at the same time, but I really feel in my gut I need to. She had expanders in for 9 months prior to her implants. But also, I think that her situation was far worse than mine as she also had cancer and chemo and radiation to deal with at the same time. I have some reasons to do it together, One I fear if I got one done, it would make me not want to get the other one done later as I have extreme anxiety issues. Other is the insurance part. I will pay less as my max out of pocket is $5,000. If I did them seperate and one next year, that a whole other $5,000. Plus the time off of work. I have temporary disability for up to 3 months and dont think I can do that twice in a 12 month period. the OB GYN said that the hysterectomy will be pretty straightforward, 3 small incisions, not like the 6 inch scar I have from my ovary removal 10 years ago and I should be able to drive the next day. Of course, I wont be, because I will be having the Mastectomies done too. I realize that this will be the most extensive op, as the PS said that I had to have the expanders in first unless I went considerably smaller in size and I do not want that. Not looking forward to it, but my aunt is kind of making me feel like my choice is a bad one. I am going in with a positive attitude and knowledge that it will not be easy. I feel though that if the doctors did not think that a person could handle it they would not all be suggesting it right? Because they all have done similar procedures together many times. I am scheduling off 2 months of work for recovery. Doctors were telling me 6-8 weeks and actually not going to go back until after the first of the year so essentially 9 weeks. My boss is going to freak out though as I work retail and I will be gone through the whole 4th quarter essentially. I am just looking for support, as obviously I am nervous. Pretty sure that I will make it through the surgery (my constant phobia of death doesnt help) but that is what is also pushing me to do this to avoid cancer later. Any advice would be welcome about recovery. I wont change my mind about getting it all done at the same time, unless the doctors have some doubts about it.
Comments
-
Wow, good luck to you. I found mx and DIEP recovery easy, I didn't have ovaries removed so I dont have that recovery knowledge.
-
Thats actually pretty encouraging, as I just expect that part to be the worst.
-
I had a pretty easy time with bmx recovery. I took 4 weeks off work and was glad I did but it felt good to get back to work. I had delayed recon and 3 surgeries in a year and although I have good insurance, the $3000 out of pocket two years in a row was rough. I can totally appreciate your wanting to get it all done at once, I probably would do the same. Best wishes for your surgeries and a speedy recovery
-
silverpullet, I am BRCA2 as well and also had breast cancer, diagnosed 9/29 of last year. I am wondering why you would do the hysterectomy. All of my doctors and surgeons have said that though I am at a higher risk for ovarian cancer, and that my BC was 90% er+, I should definitely do the ooferectomy, but that BRCA 2 doesn't pose a uterine cancer risk, and that surgery isn't necessary. I had a tumor board meet on my case, and they recommend the oof, but not the hyst. Just curious if you have some information that I haven't heard yet. I'm scheduled for my oof on 10/19, and I asked them all if I would benefit from a hysterectomy, but was told by all that it had no benefit. I'm still up in the air about doing the oof so soon, and am actually toying with the idea of doing a medical ovarian suppression for now, and the prophylactic BMX that I opted out of last fall. Thanks, and best of luck to you! cbff
-
No I do not have any new information, I mentioned it to my new OB GYN and she did not disagree with my want to get a hysterectomy. I just want everything out of me that I possibly can to decrease my risk. I only have the one ovary,but I feel like while they are down there, they might as well take everything out that I do not need. I do not know what condition anything is in down there, it could be both ovaries and my old doctor lied to me about removing the other one. With who I had for a doctor, my new doctor is expecting anything. My old doctor was removed from practicing due to being not sober during most surgeries, and she burned all the records she had. I have such bad anxiety that I will be constantly worried about getting cancer, and mentally, its the best option for me. Of course, I will talk to her before hand, and will get her opinion. But, the surgery is going to be the same either way, same holes whether I get the ovary removed or a hysterectomy, and time down from that is minimal anyway. Its the breast surgery that is the worst I have been told. Who knows, if she feels I do not need the total, then I wont get it. Its not set in stone, I just think I would feel better with it all out
-
whatever you're most comfortable with. If it puts your mind at ease to have the hyst, I say go for it. That's why I'm doing the ooferectomy now, instead of later. I'm 38, and don't think I can spend the next few years worrying about it.
I'm so very sorry that your doctor was so awful! I can't even imagine! Have you tried an anti anxiety medication? I'm on one since diagnosis day. It helps.
Wishing you the best! cbff
-
yes, I take a small dose of Xanax, butt ace increased it from 1x a day to 2-3 times a day because of my increased stress levels. I appreciate this forum group so much
-
I too am facing a mastectomy in October. ..I was diagnosed 3 weeks ago with first stage bc...at first I thought I was just going to have a lumpectomy and it was don.but the mri revealed several more tumors in the same breast..now it has to be removed along with a couple lymph nodes...I am also in retail and will be out for up to 8 weeks...I dealing with all kind of emotions..I have good days and bad days...finding it hard to get out the door sometimes...
-
Hi Ih1357, and welcome to our community here at BC.org. We're so sorry for what brings you here. We know it's such a scary time, but we're so glad you've joined us. You'll soon get responses from other kind and supportive members but, in the meantime, we thought it would be helpful this link to a section of our main site where you'll find great information for those just diagnosed: Breast Cancer 101 -- Breastcancer.org
Hope this helps! Let us know how you're doing.
The Mods
-
MarieB, thanks for your input! I do not want to go through more surgeries than necessary, so if that means hurting all over at once then fine. I have always done well with surgery, gall bladder surgery and then my cyst, fallopian tube and ovary removed all a month later. I handled both well with pain meds. I am not sure about my aunts reasoning for sure.
lh 1357, sorry about your diagnosis. Worst time of year to be away from work for our employers, maybe the best time for the employees? My boss is freaking out about me being gone through the first of the year. Oh well. I need as little stress as possible. I find it depressing knowing I have this upcoming major surgery, and worried that they might find something else, and time is going so fast!! I do not feel prepared. Hang in there. Sounds like we will be in it together.
-
I will also be having my UMX in Oct. I had previously had a TRAM flap 8 yrs ago. Everyone keeps asking me why I did not have them both taken off the first time. If I knew that this was going to happen again, I would have. I am also thinking of having my ovaries out. My mom died of ovarian cancer. People think that I am crazy for wanting everything done at once! I will see the BS next week, so I will see what she says. I am wondering how long to be off work. I am a nurse and work in the hospital. I am thinking 8-10 weeks, giving me 2 weeks off for when I get the final implants and TE removed.
-
I am glad I am not the only one thinking about it. I would rather have one hard surgery than 2 smaller ones. No surgery is easy, and the lass I have to go through the better. My husband will be nice enough to stay off of work while I am recovering so will be able to get the care I need. To be able to get him away from work for more than one would be really pushing it with his job. Mine too. Getting closer, a little over a month away.. Nervous
-
Hello Everyone, i've been posting on the weekly Taxol since I had neoadjuvant chemo b4 surgery. I find chemo even loss of hair easy to deal with, but I'm not ready or scared to lose one of my breast. I met with BS and PS. They will do the UMX and the PS will come in to insert the tissue expander. Here are the issues:
My OC is with Kelsey Seybold and she is OK but the BS only met with me once about the biopsies and about the surgery. But I found the BS and his nurse are not proactive in my care; for example, not getting back to my calls. I don't know how good he is but I don't have a good impression on him. The BS is general surgeon. On the other hand, I met with a woman BS from MD Anderson for a second d opinion, she actually takes time to explain how she does the surgery. The latter is surgical oncologist so she more specialized in breast surgery. My surgery scheduled for 10/5, is it too late to change ?
Another thing is I want to have nipple sparing but was told by PS from Kelsey that my nipples won't survive the MX. Why can't he just remove them before cutting the breast off. I would prefer the real one then the tattoo. Can anyone have any opinions and what I would expect from MX?
Thanks everyone😊
-
I wonder why you were told your nipples wouldn't survive. My PS was all for the nipple sparing....I was the one who hesitated. You need to feel comfortable with your team. I had to jump through hoops and see military MD and then say I wanted second opinion. They would have been my "if I have to" doctors. I really like my new team. I also am very anxious abt upcoming surgery....Oct 11th..
D
-
Houston I was diagnosed in February of this year. With a golf ball sized malignant tumor in my right breast and ADH in my left breast. I was seeing a general surgeon who did not do reconstruction. I asked him about removing both breasts and he wouldn't do it. He said insurance wouldn't pay. He did an excisional BX in the ADH side and said it was taken care of. So a UMX on right was scheduled for 4/11/16. The week before the scheduled appt I went for a 2nd opinion to a BS in Memphis who told me insurance has to pay for BMX under my circumstances. She told me more about my condition and choices in one visit that I had been told in 4 months. Yes it took 4 months from first mammo to scheduled surgery date. I was feeling a little unsure with first surgeon and chose the second surgeon and reconstruction at same time on 4/19. Glad I made that choice.
-
Also meant to say during my BMX ADH was found still in left breast as well as in 2 lymph nodes in left. The pathology team decided the nodes were positive as a result of the prior surgical biopsy. I don't mean to imply the first surgeon was inadequate. He did what he was experienced at doing. I just went for a surgeon who was experienced with breast cancer surgeries and a PS that was the same in her field. And they worked as a team.
-
Seedsally, it sounded you made the right choice. Under the law, BMX and reconstruction are both covered. Not sure why the PS from Kelsey said the nipples can't be saved but I planned to get my records and talk to the lady BS at MD Anderson. I think she can do skin and nipples sparing. This may mean another week delay in surgery😞 and what's happening to the BC.
-
I am not sure on your doctors exact reasoning, however, I know my plastic surgeon and the general surgeon both had said that sometimes the reason that the nipple cannot be spared is if you have alot of sagging in the breast that the nipple, would end up in an awkward place and would be more under or the bottom of the breast in the finished product and would not look normal. I have had no kids (not sure if that matters to saggy breast issues, but, mine were in such a place that I was a excellent candidate for nipple sparing. Just something to possibly consider as a reason?? Anyway, I am a month away from surgery. almost all my pre ops scheduled, need to have a ultrasound done now in my lower regions to make sure there is nothing abnormal and no biopsies needed.
-
just something to think about--by adding the hysterectomy surgery in at the same you might just overload your system and compromise your body's ability to heal.
-
Hi Silverpullett, yes I have two kids and my breasts quite sagging. The PS said something like the breasts are long and the tumor sits Iinfront above the nipples. Guess you're right.
-
silverpullit:
Ive had both surgeries you are planning. Though mine were over 10 years apart and my hysterectomy was open, not laproscopic. I highly recommend renting a lift recliner chair if you do go ahead with both surgeries simultaneously. I used on after my BMX and it was a godsend. You will be unable to use either your arms or stomach muscles much after these surgeries so getting out of bed will be very difficult if not impossible.
You can rent one from a medical supply store. Get one that will stand you completely up or recline you back to a 45 degree sleep angle as you may be required to sleep this way after the mastectomy. Speak to your doctor about renting a chair, it may be covered by your insurance.
Good luck! I'm so much more relieved to be rid of the tissues that were likely susceptible to cancer. I'm BRCA1, not BRCA2 but I understand your worry and decisions.
-
wow, you know, I never really thought about not being able to use my arms or stomach to sit up or down. My husband will be here to help me the whole time but, how will he grab me to get me up? I do not know I have had operations on my ovaries before, and had a large 6 inch incision, but I could still use my arms. I am seeing two of the doctors next week, so will be sure to ask about a chair
-
hi everyone, just have my surgery we%$%d6v erynhhhh
-
Hi everyone, just had my surgery October 5 and went home 10/6 in afternoon. I didn't know surgery is 20 times worse than chemo. Plus I'm kinda depressed looking at lopsided breast. And the pain and drainage that we have to endured. I don't know what I'll do without my dear husband. How's everyone manage their drains, post-op?
-
I am 20 days away from surgery, and have had the full run down of what to expect.as far as the drains, how to empty and so forth. I already got my medications for post op. I will look deflated on both sides, not sure how I am going to handle that. They told me when I go home I will receive a fanny pack that will automatically administer numbing agents to the breast areas for a while. hysterectomy wise for me, pretty simple and straight forward, robotic surgery, minimal recovery, but have to do a bowel prep the day before and cannot eat at all for 24 hrs prior to surgery. I am not looking forward to that.
-
Hi I am having a double masectomy Oct 26, 2016. Iam 52, BRCA2 positive, just diagnosed with stage 0-none cancer in right breast. Am not going to have reconstructiion. Am so scared about surgery, what will happen if I cannot quit smoking before surgery (I have not had one in 3 days but cannot stand it as I am so scared) my new husband of 2 years is loving and devestated and I dont know how to console him. I am too scared to have recon as dr said my skin is thin, may rip during the stretching, the implants might break and have all this stuff leaking into my body. But I cannot even imagine how my husband will even want to be physically near me. After, I will look like a boy. It's just horrible. Please share some good news with me. Anyone. Did anyone smoke up until the surgery? My dr said I need to be smoke free for 3 weeks prior to this double masectomy or I could have a heart attack or a stroke on the table.
-
Hello Ladies!
I am scheduled OCT 20 for BMX w/SNB on the left breast and prophlactic MX on the right. I am also positive for the BRCA2 gene mutation. I had a full hysterectomy at age 42 and it was pre-cancerous.
Keeping everyone in my thoughts and prayers for your upcoming and recent surgeries! Hang tough! Take it one day at a time!
-
spent some time with my friends and family who have had these surgeries this week and co doesn't I am making the right decision. I am thinking of all my people on here who are coming up on surgeries as I am and hope all goes well for all of us
-
Just had my BMX with tissue expanded yesterday. Home today. The worst part was how I respond to pain meds. I found out they were giving me Zofran for nausea (the anaesthesiologist said MX surgery is more succeptible to nausea for some reason) and Zofran actually gives me horrible headaches, which made me nauseous, which was a horrible cycle! Once I got home and off the Zofran it's actually totally tolerable. The drain tubes are a huge hassle, but should get two removed and the two pumps removed Monday so I'll only have 2 tubes left to deal with. Phew!
We got this ladies. We aren't the first to go it and if the women before us can do it and thrive - so can we!!
-
I know my plastic surgeon and the general surgeon both had said that sometimes the reason that the nipple cannot be spared is if you have a lot of sagging in the breast that the nipple, would end up in an awkward place and would be more under or the bottom of the breast in the finished product and would not look normal.
Ah, that's what free nipple grafting is good for, if you're able to keep your nipples. It likely wouldn't work too well with tissue expanders, but if you're planning to stay flat or do delayed reconstruction, it may be an option.
My breasts were too large and saggy to do a traditional nipple sparing mastectomy; it would have left me with 'permanent headlights' and a 'puckered looking AA cup', which isn't at all what I wanted. I just wanted to be flat and have a relatively normal looking chest.
So, my PS and I decided to go with free nipple grafts; you can even request them to be resized if you don't like how large yours are naturally. I didn't have mine resized, however, and they look fine and were put back on where one would expect to find nipples on a chest. She's also done top surgery (which is just a bmx, usually with free nipple grafting, and some fat transfer to give the chest a more masculine contour) on FtM people before as well, so she has experience with nipple grafting.
If you want to keep your nipples but can't do a traditional nipple sparing mastectomy due to breast size/sagginess, it's definitely worth asking about nipple grafting instead.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team