Intimacy with Long-Term Partner after Double Mastectomy and Letrozole

What you say about your head going into dark places is exactly what I have been through. As of today, I am one year post op mastectomy with expanders. Last year in Dec is when the expanders were removed and implants placed. Only recently have I come to terms with …..everything. My husband was so afraid to hurt me, and I was so afraid of being too ugly to be desired, that we had months of stress. Things will never be the same, but things have improved. I wish I had some magic wand grab bag of inspirational words to give to you but I suspect we all just have to take the individual time necessary, to in some way heal from all of this. No one can understand this unless they have traveled through it, so we also need to give grace to others. It’s always a good thing to force ourselves to look at things from their perspective as well. I’ve had plenty of moments wondering if I could be happy again.
I am. You will. It’s a joint commitment between you and your partner. Patience. Trust. And getting help when you need it. Life is so precious and sometimes so short. I had to remind myself of this, and switch out from hopeless, to making things work. Pleasing my spouse, pleasing myself, is human and acceptable and is exactly what God intended. Who am I to deny that? Let me stress that our brains get very focused toward protecting us from whatever we might perceive as the next unpleasant thing…….we have to learn about our brains, and how to re-wire them. It’s sweet that our brains want to protect and control, but it’s not always what we need to survive.
Or how, we want to survive. I can shut the world out in fear, or I can join in and enjoy the here and the now. I am jealous of those who can “come to terms” faster than I did, but again, we all travel on a different time line, affected by many different things in our lives. Best wishes to you and to your partner, in finding your happiness once again.

Hi angik. I just read your post & have never made a comment since I’ve joined this group, but today, for whatever reason, I signed in to comment. Actually, I could feel the dark place you mentioned. 1st off, you’re human. Breast cancer, double mastectomy & letrozole at 53. Like hormonally our female bodies aren’t going thru enough & then this!? Devastation all around. I don’t know if you’ve had reconstruction surgery so not sure if that’s an added factor to your mental state. Letrozole alone can cause low mood, fatigue, sadness, anxiety or depression. AI drugs lower our estrogen soooo much, that we’re fighting ourselves to feel what we remember as being normal. You said you were in a dark head place but you reached out! That alone shows strength & courage so please continue. Has your oncologist suggested another AI drug to try or even given you a “drug holiday” to give you a break? Psychologist are great, but that doesn’t change what is chemically going on in your body and mind. Besides myself, both of my sisters had breast cancer. Unfortunately, they’re both gone & my diagnosis was a little over a year ago, so my genetic verbal references can’t help me on my journey. One sister stopped her AI treatment. All I can remember is her saying she didn’t feel right, she wasn’t herself, she couldn’t think, etc. I have no idea what or if she discussed this with her oncologist& will never know. She was a nurse, full of energy & knowledge but very private. The reason I’m sharing is because this was the beginning of her mental decline. You have got to be your own advocate, fighter & stay determined to find balance & peace along this challenging road. You are not alone! Ask questions, make suggestions, listen. Your quality of life is huge! You’re still young& have a partner. Yes, it’s hard for them too, but you didn’t choose to feel like this. Please keep searching for things & ways to help. ☮️&❤️

I am not sure if you are familiar with Kat Tymf. She is politically independent but does the 5 on Fox News. She was very forthcoming with her breast cancer/mastectomy and on to very realistic nipple tattoos that she traveled to an artist who specializes in them. She is very very happy with the results and literally made her feel whole again. I am on Letrozole and I have very few side affects. Except for the twenty into menopause for me. My oncology nurse practitioner recommended a product called Bonafide for their Revaree Plus vaginal moisturizer. It is hormone free. All of their products are also hormone free. I found them to be very realistic. And not feeling like any other lube. It is really nice. I am out over a year and am becoming more interested in sex. I have given it up to God and decided I am not going to live another negative or sad day for the rest of my life. I just got sick of listening to myself. Everyone is different with different needs but that was my way of handling it.

Hello @angik and welcome to this next chapter of reality with breast cancer.
I love what @jlvk posted, what a gracious way to move forward.
I had my initial diagnosis in my 30’s and found that intercourse was no longer physically practical. The atrophy left me bleeding and in pain when we tried.
I am very blessed to have a very understanding husband who was committed to our marriage.
Now 20+ years later, we have entered yet another chapter of our marriage, where we are very comfortable with a deep abiding love and companionship.
Have you had a chance to talk to your gyno doctor about this, I found mine to be a valuable resource?

@jlvk thank you! I have struggled with my mental health all my life, though have been stable the last 20 years. I am not sure that it’s the Letrozole that is causing the moods, or the stress of it all. I know that the meds are potentially saving me from recurrence so going off would be a last resort. I appreciate your perspective.

@dinnamm thank you! Bonafide Reveree has been a Godsend! I also meet with Mayo’s menopause clinic MD in October and I am sure they will be helpful!

@marygrannie I teared up at your reply. Validating everything I am feeling/struggling with. Thank you!

@angik This is a good site, for all of us to try to help each other. We are all in different stages of treatment, and that can be really helpful. We tend to think that how we feel, is strange, when in fact, it’s exactly how others have felt. We all will do well to remind each other that we are human with human feelings, human reactions, and human needs. I do not know how to get the doctors and nurses to stop for 10 minutes and ASK us, what we might be struggling with. But then again, would we say anything other than “oh, I’m fine”? Maybe that’s the key = when your patient sighs and says I’m fine, ask more questions and offer more help. I do have one surgical PA who sat down with me on my “final” appointment after I was having my check up after the implants were placed, and she said “tell me everything that you are feeling”. The tears began flowing and I told her some things. I didn’t mention the intimate struggles with my husband, but I did say other things. It is sad in our medical world that too often, the docs really aren’t even in control of their schedules, and they are not given more than 15 mins with each patient to ASK about mental health issues. For as much as we are told that the mental and physical health go hand in hand, one or the other is too often ignored.

HI!

I am actually glad you brought this up. Sex and intimacy is really a challenge, when, 1. you don't feel good, and 2. you look awful to your self with all the body changes, and stress of it all. We started off slow, soft talks, back rubs,and massages. This has progressed to making love, very short session, but still making love. Patience is needed on both sides. But, dryness is a problem, so one of the pod casts I listened to mentioned this product for vaginal dryness, and it works!! Good Clean Love, insert vaginally with your own finger, as directed on packaging , a week before sex. it's not 100% but it's much better than no sex! I have always been interested in sex, so this also helps. Good luck I hope this helps. A week prior before sex to get everything less dry.

@angik I agree. It’s hard to know what’s causing what, but reassuring to know that others can be experiencing similar. Sharing our thoughts, experiences and support is such an asset in this unfortunate journey☮️❤️