What should I do.

What-to-do48

Hi: I found out 3 weeks ago that I have the mutated BRCA1 gene.  I am 48 years old and a mother of two.

My sister was diagnosed with 2 primary cancers at 48 years old (colo-rectal and peritoneal).  She had genetic testing after her diagnosis.  She too has the BRCA1 gene.  She's 20 months into her treatment for the cancers. Chemo has not been good to her.  She's on her 3rd kind and still is very sick.  She's only had 7-8 months of feeling o.k.

My husband and I have done a ton of research about my options.  We've decided on a complete hysterectomy and bi-lateral mastectomy.  Can't see myself just doing screening and wondering all the time if I have breast/ovarian cancer. Wait time for the surgeries is 1 - 1.5 years...yikes!! I'm looking for a referral to a surgeon who may not have such a long wait.

My questions are: How much will my sex life change?  Does every woman lose her sex drive after surgery?  What can be done to improve the sex drive?

Will I have alot of scarring?  What kind of reconstruction do women get?  My surgeon says the silicone implants are the best way.

This entire process has been overwhelming and exhausting. I'd appreciate any feedback.

Thanks

Traci-----TripNeg

My sex drive is notta. Sorry.

I highly recommend you read Gina's book: Intimacy After Breast Cancer.

My other recommendation is that you fully engage with your plastic surgreon so that you never....walk out of his office without a full understanding of everything. I hate my reconstruction, and I blame it on my unwillingness to open my mouth and communicate what I was feeling/thinking.

Good luck girl.

((hugs))

Traci

What-to-do48

Thanks Traci:

I've yet to meet my plastic surgeon but will for sure ask a million questions.

What kind of reconstructive surgery did you have?

chinablue

If I have it right, you have not been diagnosed with breast cancer and you are considering prophalactic surgery.  Your sister is struggling with cancer that was not in her breast or her ovaries.  I just want to get a clear picture before I comment.

What-to-do48

My sister has primary peritoneal which is treated the same as ovarian.  The peritoneum is the lining of your abdominal cavity.  The life expectancy with peritoaneal is less than with ovarian.  She also has been recently been diagnosed with breast cancer.  We both have the BRCA1 mutated gene. This means that we have a significantly higher risk of getting breast and ovarian cancer and recurring breast cancer.  If I have a bilateral mastectomy my chances of getting breast cancer are 93% less than if I don't. I gather you don't have the BRCA1 gene.

hrf

I have the BRCA2 gene as do many of the women in my family. Everyone I know who has a gene mutation gets cancer. If you haven't already done so, check the FORCE website. It stands for Facing Our Risk of Cancer Empowered and it is devoted to those who carry either the BRCA1 or 2 mutation. There is a lot of great information on that site and there is also a discussion board like this.

smirks44

Hi!

I am BRCA2 positive (no cancer diagnosis), and had an oopherectomy and preventative mastectomy a couple of years ago.

As hrf mentioned, you should definately check out the FORCE website.   You will find lots of women there who carry BRCA mutations, and are making the same tough decisions that you are facing.  

You asked about breast reconstruction....I highly recommend the Breast Reconstruction Guidebook by Kathy Steligo if you are looking for information about reconstruction.  The book gives excellent info about the various kinds of reconstruction that are available, and outlines the pros and cons of each.  

Where do you live??  Sounds like you have a long wait!!  Have you had a consultation with a surgeon already, or is it a long wait just to speak to them about the kind of reconstruction they do???  Is the wait for the hysterectomy long as well???

What-to-do48

Thank you so much hrf.  I'll check out the website. Alot of woman in my family have had breast cancer at various ages. 

What-to-do48

I have spoken to my breast surgeon and he's great.  Unfortunately, the wait is long. I've yet to meet my PS.   I am waiting to have an MRI for my breasts.  I'll be happy knowing I don't already have breast cancer.

As for the hysterectomy, the wait for my gyni surgeon is 1.5 years.  I've asked for a referal to a to a gyni/onc and am to get a call with an appt. date today.  I really want the hysterectomy asap.

Thanks for the book info.  I'll get it from the library.  There's so much info to look at...it's overwhelming.

chinablue

I am waiting to hear if I have the BRCA mutation.  Frankly, I am not sure I know what I will do if I have the mutation.  I have had uni-mx, chemo, and radiation to treat bc.  It wasn't easy and I had many side effects.  I am now in menopause with hot flashes and reduced libido. I am doing all that I can to stay healthy and reduce my risk of recurrence (i.e. exercising, maintaining a healthy weight and diet).

 If I have another mx and/or ooph, it doesn't mean that I will never have cancer again.  It may come back in other places.   I guess it is all about probabilities.  What a gamble!?!?

EstherMSKCC

Dear What-to-do48,

I'm sorry to hear that you are facing these difficult decisions about your care. I'm an employee of Memorial Sloan-Kettering Cancer Center and am writing to share a few resources that you may find useful as you gather information about reconstruction after mastectomy and intimacy after surgery.

The National Cancer Institute's (NCI) web site offers a good overview:

www.cancer.gov/cancertopics/factsheet/Therapy/preventive-mastectomy

The American Cancer Society (ACS) has a page with comprehensive information about reconstruction:

www.cancer.org/docroot/CRI/content/CRI_2_6X_Breast_Reconstruction_After_Mastectomy_5.asp

And Memorial Sloan-Kettering's web site offers some good educational materials on this topic:

www.mskcc.org/mskcc/html/95053.cfm

www.mskcc.org/mskcc/html/95956.cfm

www.mskcc.org/mskcc/html/88141.cfm

With regard to intimacy, the NCI and ACS are both excellent sources of information on this topic:

NCI:

http://www.cancer.gov/cancertopics/pdq/supportivecare/sexuality/Patient

http://www.cancer.gov/cancertopics/life-after-treatment/page5

ACS:

http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/SexualSideEffectsinWomen/SexandWomenwithCancer/index

http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/AfterDiagnosis/after-diagnosis-how-will-cancer-affect-my-sex-life

You might also consider seeking out counseling and support programs, which may help you cope with your situation. The American Cancer Society provides guidance on finding support programs and services in your area: http://www.cancer.org/Treatment/SupportProgramsServices/index

Livestrong may also be of help finding one-on-one support: http://www.livestrong.org/Get-Help/Get-One-On-One-Support

Another excellent resource is Cancer Care. They offer free on-line support groups and individual counseling. CancerCare social workers can also guide patients and family members to counseling and support groups in their own communities. You can reach them through these links: http://www.cancercare.org/get_help/counseling.php and http://www.cancercare.org/get_help/supportgroups.php

I hope this information is helpful and wish you the best of luck moving forward. -Esther

LISAMG

Highly recommend 2 other books for u, especially during the decision making process. Please read Positive Results by Joi Morris and  Previvors by Dina Roth Port, both are extremely helpful for women at risk of hereditary HBOC.

I am 12 weeks post op from my risk reducing nipple sparing mastectomy, the best decison for myself. I do not have the BRCA gene, but nor do affected family members with BC and OVCA. I could not live knowing my high risk and having multiple biopsies. I no longer fear BC and I'm happy with my results, still a work in progress. You are being very proactive with your health. Gather all the facts, seek opinions and remember surgeons will only recommend what they do best, but not necessarily what is best for YOU!! Lots of decisions and choices to consider. Nipple sparing vs. skin sparing mastectomy??. Immediate implants, expanders or  flap procedures?? Know ALL your options.  Best wishes!

What-to-do48

Thanks for all the info. EstherMSKCC.  I'm going to check out all the sites you've noted.  It's amazing how many people on-line have helped me.  I'm happy I found this forum.

What-to-do48

Hi LISAMG:  Thanks for the info.  My surgeon says he has to take the nipples and as much skin as is possible.  Do you have sensation in your nipples now?  He's going to put in expanders and then replace them in 6 months.  I'm waiting to get into the breast clinic and seek other opinions.  I'll get the books from the library.  Thanks again.

Catwoman61

I am 49 yrs of age and 2 1/2 yrs ago tested positive for the BRCA2 mutation.  During the LONG weeks of waiting for the result, i did a lot of soul searching on what was best for me.  My mother had bc twice, passed away at 48yrs of age...I knew I did NOT want to go through what she did, so 4 months after my positive results I had a ooperectomy and 3 weeks from that had the bilateral mastectomy w/reconstruction.  I had the same concerns as you and worried non stop, but my Dr said "remember everyone is effected in different way's, just relax"........SEX, it could not be better:)  I do not feel as though I have lost my drive at all, of course it helps that my husband is a "pleaser".  It does take a little longer to get the big O, but enjoy the journey getting there.  I couldnt take the surgical menopause, my dr put my on a low dose hormone (FemHRT 1/5)  Sex had been the same before and after taking the FemHRT. ........My scarring is not bad at all, i used lots of Vit E and massage the scar area.  I had tissue exanders in for 3 months then swapped them out for Mentor memory gel silicone implants.  I wanted to be the same size as before....expanded up to 900cc, implants 800cc.  Having some problems with the right side from the inside scarring and pain.  11/11 going back to have re-reconstruction, all is fixable:)  I wish you all the best my dear

What-to-do48

Thanks so much Catwoman61.  You made me feel better.  How was your recovery after having the surgeries so close?  How is the doctor going to deal with the inside scarring? Or is there anything he can do?

Good luck with the re-reconstruction.  Hope all goes well.  Let me know how you fare out.

Thanks again.