DCIS

Getting Sex Back

In this post, I am going to tell you how I got my sex life back after surgically-induced menopause. I’ll start by saying that if you are a member of my family, you may want to stop reading.  I’m not planning to be too graphic, but I will definitely be writing more about my sex life than anyone who ever eats at a dinner table with us will feel comfortable knowing about.  But other readers – you may want to pay attention. If someone had shown me this post two years ago, I would’ve been so relieved to have it!  I hope you feel the same.

So yeah, my husband and I are having sex again, and it’s really really good.  By “again,” I mean pretty much weekly for the first time since we were married almost six years ago.  By “good,” I mean I can have multiple orgasms, and I’m 100% sure he’s enjoying himself, too. I think about sex now while we’re not having sex, and I look forward to it again after many years of not caring about it at all.

Let me go back before the hysterectomy/BSO just a bit.  Our sex life declined only months after our wedding for a variety of reasons.  We moved, had trouble settling in, my husband was unemployed, we had no money, and we fought a lot. Soon after we resolved all of that, I became pregnant, and I think we were both freaked out by the idea of having sex with our baby “in there,” so there was very little sex after the first trimester. In the third year, I suffered from debilitating postpartum depression and anxiety, and when I recovered, I essentially suffered from PTSD.  It took me nearly a year of therapy to realize that I was terrified of having sex: sex could lead to pregnancy, and pregnancy could lead to the dark abyss of PPD/A, and there was no way I was going back there. Also, I had begun to experience pain during intercourse after my pregnancy (three gynecologists were unable to diagnose it). Even though the pain was only during intercourse, I became turned off to the the idea of sexual activity of any kind. The cocktail of anti-depressants and anti-anxiety medications I was taking didn’t help my waning libido.

For a while, we just took care of our kid; eventually we moved again, and I think we became kind of used to not having sex.  It was only six months after we moved that I was diagnosed with DCIS, and within a month, I had a bilateral mastectomy with DIEP reconstruction – it was about three months until my body felt normal again and we tried to have sex.  It was clearly nothing worth reporting about; I was ok with my new body, but that same post-pregnancy pain was still there.  Then I had the hysterectomy and BSO.  As if things could get any worse – they just went downhill from there. I lost all of my libido. Before the hyst/BSO, at least I still was still turned on by Don Draper – not Jon Hamm – just Don Draper, but by this time, even the Mad Man himself couldn’t excite me. And when my husband and I did try to have sex, it was a complete disaster.

We clearly had problems with our sex life before the hysterectomy/BSO, but I believe that the steps we took to fix the problems are those that could help anyone suffering from mental blocks, pain during intercourse, and lack of libido — all effects of surgically-induced menopause — regardless of what your sex life was like before the surgery.

So, how did we fix the problems?  Well, I can tell you easily what he did – he was patient and understanding. He didn’t pressure me. At a certain point, on the advice of my therapist, I told him that sex was off the table until I could figure out what was going on with my body and my head. That way I didn’t have to feel guilty that he had an expectation of sex and I wasn’t fulfilling it. He gave me all the time I needed. Years. And here’s what I did with that time.

Internal Hormone Therapy: I started at my gynecologist’s office. I had convinced myself that all of the issues around sex were caused by the hysterectomy/BSO – both mentally and physically.  My gyn suggested two things: vaginal estrogen and a sex therapist. Despite a diagnosis of DCIS, I had already been on an oral estrogen because of my depression and mood swings, but my mother had suggested that I ask for vaginal estrogen to help with dryness (which results in pain with intercourse).  My understanding is that vaginal estrogen can be safe for women who have BRCA mutation or have had breast cancer (those who are usually told not to take oral or transdermal estrogen) because it’s basically local – it doesn’t go into your whole system.  So my doctor prescribed Vagifem.  The Vagifem creates lubrication and it does help with libido (I have no idea how it does that, but I could tell within the first two weeks of using it that I some “special feelings” down there).  But it did not help with the undiagnosed post-pregnancy pain, and it didn’t help with my new fear – the vaginal cuff.  I was terrified that my husband’s penis would rip through this wall; it was a block that I was having difficulty getting over.  Nevertheless – the sex therapist – I rejected this advice. Why?  Well, I have been in therapy pretty consistently for about 20 years, so I suspected this was something I could figure out eventually on my own and with my current therapist.  I also really really really wanted to continue to blame the whole thing on lack of hormones because of the BSO – I didn’t want to admit that we’d had some problems with sex before the surgery.  I wasted over a year going down denial river.  Then….

Myofascial Release and Pelvic Floor Therapy: In January, I began to have spasms in my abdomen that I knew was from the muscle that had been cut during the flap procedure for my mastectomy (two years earlier). I went to see my plastic surgeon, and he prescribed physical therapy.  I sought out a family friend who is a physical therapist, and she introduced me to a progressive treatment she is now doing – myofascial release (yes, the website is credibly cheesy looking).  As she performed MFR on various parts of my body to release pain, and as it began working, I told her about the pain I had during intercourse. She explained that she could also do MFR internally – through my vagina. She also taught me how to do it to myself in between sessions using dilators and other therapy tools.  After about five months of MFR on my entire body and only about two months of pelvic floor therapy, I was able to have intercourse with no pain for the first time in more than five years.  But I still  wasn’t enjoying sex (having orgasms); my libido was still low, I still had a fear of the vaginal cuff (regardless of countless affirmations by medical professionals that the cuff was indeed healed and the chances of it tearing were practically nil), and so I knew I still had mental blocks that I needed to work out.

Mental Health: Although my PTSD is a moot point now (I can’t get pregnant, so there’s no worry there), I was still having problems in my head that weren’t allowing me to enjoy sex, even though I’d received treatment for the physical pain. I won’t get into a lot of the details about all of the particular issues, but this is just to say that therapy did help me, even though it wasn’t specifically a sex therapist I turned to. The way my therapist helped me the most was that he suggested scheduling sex. After not having regular sex for nearly five years, working a more-than full-time job, keeping a household, raising a preschooler, going through a cancer scare and a year of surgeries, the death of my mother-in-law – it’s really easy to make an excuse for why “not tonight, honey.” My therapist suggested that sex on our calendar would help us stop making excuses. It might not seem like the most romantic of solutions, but we had to start somewhere.

Scheduling Sex: We decided to schedule sex on Sunday nights and do our best to keep to the schedule regardless of how tired we are or even if we aren’t in the mood. Sex is a good way to start the week – connected and happy. For the last two months or so, we have more or less kept to the schedule. This has had several positive effects. After going years without regular sex, it’s helped me to see the value of sex as a regular part of our relationship, even if it’s not spontaneous (and now that it’s better, it has become, on occasion, spontaneous, too). It’s helped me to get over my fear of the vaginal cuff tearing. And of course, I think it’s helping both of our moods a lot.  But having sex on the schedule can make it seem like just another task we do every week, like Thursday night garbage and Saturday morning laundry.  So we’ve had to spice it up.

Discussion of my “new” sexual needs: Over the last few years, after two breast surgeries and a hysterectomy/BSO, my body is different both inside and outside.  So it makes sense that the sexual activities I enjoyed before I gave birth four years ago no longer help me achieve orgasm; it took me a while to realize that I have new needs.  I know I was in denial about this – mostly because it meant admitting that I am a menopausal woman, which is something that has been incredibly hard for me to come to terms with as someone who is not yet 40 (at least, not for another year and 8 days); it’s something that makes me angry and sad every day. While this isn’t the case for all  women, for me, being menopausal means that having an orgasm isn’t easy anymore, and that my husband and I both have to work harder for me to enjoy sex. So, importantly, I had to be open with my husband about my new needs. As I sort of expected, he has been very willing to respond to my new needs.  The results – not only can I achieve multiple orgasms now, but I think about sex and look forward to sex.  Sunday is definitely fun day.

I know this is lengthy and detailed, but ever since I had the hyst/BSO, I have looked for advice like this – for someone to tell me how to reclaim my sexual identity after all of my biologically female parts are now gone.  I hope this helps someone else do just that.

BRCA is a Vengeful Mother F%78er

As I’ve mentioned before, I am BRCA2+ and my husband is BRCA1+. He inherited his gene mutation from his mother; her own mother died of breast cancer very young (I believe she was in her 50s). Now, his mother has been diagnosed with breast cancer for the third time, and this time it’s in her bones. We don’t have a lot of details (this is a side effect of being married to a man – he asks no questions so I get no details unless I call myself, and at this point I don’t want to bother her). She has an appointment at Dana-Farber on Tuesday and will learn more.

My husband is a mama’s boy in every sense of the phrase. He is understandably distraught (mopey is an understatement). And I am concerned about both of them and also her brother. I have never in my life witnessed a closer sibling relationship.

Cancer from a BRCA mutation is vengeful. It came to her once as DCIS, which she treated with radiation and a lumpectomy. So it came back worse more than ten years later, invasive, and she treated it with a mastectomy and chemo. With the chemo she not only lost her hair, but also lost all feeling in many of her fingers and toes (neuropathy), a side effect that’s thus far been permanent. Her mastectomy wasn’t as successful as she’d have liked – the implants caused her a lot of pain in the beginning, and she is still bothered by them sometimes.

So now the cancer is back again, not even two years later, metastasized to her bones and hopefully not to anywhere else (I think she’s had biopsies in her liver and kidneys though, and I know a few weeks ago she had a blocked bile duct, so I’m nervous that they will also discover it’s in her liver).

The BRCA mutation will not leave this woman alone. It’s bad enough to have lost her own mother so young, to have also witnessed her daughter go through breast cancer and treatment at age 30. Now, to have this a third time.

Vengeful mother fucker, BRCA gene. What did this poor woman ever do to you?

What Does My Gut Know?

Last year on this day, I was at Magee Women’s Hospital getting my yearly mammogram.  I wasn’t nervous – I’d done this many many times and, because at the time I had just turned 36 years old, I knew I’d be fine.  Even though I am BRCA2+, I didn’t expect to even think about cancer until I was at least 40, and by then I knew I’d have had a preventative mastectomy and it would be a moot point.

After the mammogram, I sat in the waiting area while the radiologist determined if I needed to have any more films.  When the technician came to get me and said I would be having an ultrasound, my gut kicked into high gear.  I knew right then and there that I was in trouble.  And I was.  After some more films and an ultrasound, the radiologist showed me the areas of micro-calcification in my right breast, and I scheduled a biopsy.  There was no doubt in my mind what the biopsy would reveal.

Luckily, it wasn’t as bad as it could have been.  The biopsy revealed pre-cancerous cells (DCIS).  Nonetheless, as someone who is BRCA+, I knew that my life was about to change in drastic ways.

Since this day last year, I have had a bilateral mastectomy with DIEP reconstruction, a complete hysterectomy with oophorectomy and salpingectomy, and tomorrow I go in for what will hopefully be my last surgery – some nips and tucks to revise the original breast reconstruction.  Strangely, my gut is telling me this is a bad move – that I’m pushing things, I’m asking for too much.  After two perfect surgeries, why go in for more, especially when it’s solely aesthetic?  I feel like there’s too much of a chance for something to go wrong – my biggest fear, like the last two times, is the anesthesia – what if I just don’t wake up?  And what if I don’t like the result this time?   Do I go in for even more plastic surgery?

Regardless, I do feel like I need some closure with this whole thing.  So, I’m going to allow my brain to supersede my gut on this one.  As I did before my previous surgeries, I will use today to relax, listen to my pre-surgery guided imagery, and just enjoy the day.

Before I head in for the surgery, I do want to give a message to all (three) of my readers:  Anyone can manage his/her own risk of breast/ovarian cancer.  Genetic testing, genetic counseling, screening, surgery – whatever you choose, we all have the power to manage our own risk.  Doing so will save your life – it saved mine!

Losing the last 13%

When diagnosed with a BRCA2 mutation, you are told there’s an 87% chance that you will develop breast cancer over your lifetime.  So you bide time while you figure out what to do.  When you are BRCA2+ and diagnosed with DCIS, you officially lose that 13% – the small bit of hope you might have been holding onto thinking you would get to be in the lucky minority.  You no longer have time to bide.  Instead, it’s time to act.

So I’ve been a bit frustrated by the many articles lately that have talked about changing the name of DCIS (removing the word “carcinoma” to eliminate the association with cancer).  The rationale is that too many women have needless mastectomies when receiving this diagnosis, and that there’s little research that shows that DCIS will become cancer.

My frustration is with the articles that do not mention BRCA mutations.  By not mentioning BRCA mutations, these articles (often written by doctors) lead women (even those with BRCA mutations) to believe that they’re making a cavalier and “hysterical” decision to have a mastectomy.  And, by changing the name, women with BRCA mutations who don’t have access to good healthcare professionals and genetic counselors, could be under the impression that DCIS doesn’t mean anything more to them than it does to the general population.

Below is a link to a storify of my conversation with a blogger from Breast Cancer Action.  I’m really impressed that they cared enough to respond to my tweet and to clarify their position.

[View the story “DCIS name-change debate” on Storify]

Cancer or Not Cancer: Is That the Question?

In January of this year, I was diagnosed with Ductal Carcinoma in Situ (DCIS) – Stage 0 Breast Cancer.  DCIS isn’t really cancer – it’s the presence of a collection of pre-cancerous cells.  Are they likely to become cancer?  This is something researchers haven’t quite figured out.  They know there’s a chance, and doctors recommend particularly if you have a BRCA mutation, that you have minimally a lumpectomy if not a complete mastectomy to ensure that the cells don’t continue to grow and become invasive.

When my doctor called to give me the diagnosis, I began to cry.  She asked if I was ok, and I said, “I can’t believe I actually have breast cancer.”  And she said, “well, you really don’t – you have pre-cancerous cells.”  Hmmm.  This didn’t make me feel much better.  It also didn’t help that by the next day, my online health record included “Breast Cancer” along with the list of my other health issues.  So what’s the deal – did I have cancer or not?

Recently, Dr. Susan Love (whose blog I love – no pun intended), wrote about this question:

Some of these cancers [like DCIS] may remain precancers throughout a person’s lifetime. Others may grow so rapidly that they have already spread to other parts of the body before they are found. The problem is that we currently treat all cancers the same. This leads to overtreatment of some and undertreatment of others.

Dr. Love would like to see these types of cells tracked in a registry:

Creating observational registries that would follow women with DCIS and LCIS over time so that we could determine which precancers do progress and, if so, over what time frame. We could also identify the local environments that egg  precancers on to become a cancer that could result in death and that which will not–which would keep many women from worrying and being overtreated. Or, even better, we could figure out what causes precancerous and cancerous to arise in the first place so we can prevent them all together!

This is important because right now, when a woman is diagnosed with DCIS, she has no idea what the chances are of the pre-cancer becoming cancer.  She only has two choices –  surgery, or wait around and risk the development of invasive cancer.

So why am I writing about this?  I suppose I’m sort of bothered by that we even ask the question – is DCIS really cancer?  In this recent NPR story, Dr Laura Esserman says:

I don’t think we should label [DCIS] as cancer. I think we should call it a ‘ductal lesion.’ I think people would be much more willing to be calm about it […] I think we all need to take a step back and not be so hysterical.

And that is why I’m bothered.  The implication here is not that there is a scientific reason why DCIS should not be considered cancer.  Rather, the implication is that there’s a psychological reason – and that those of us who’ve had mastectomies for fear of DCIS becoming invasive are actually just over-reacting.  I wish Dr Esserman had at least considered that those of us with BRCA mutations are in a different situation – I don’t think any doctor would consider a BRCA+ patient to be “hysterical” if she wanted a mastectomy after a DCIS diagnosis.  Especially with a BRCA mutation – you just don’t know.  Those pre-cancerous cells found one day could be invasive the next.  So although Dr Esserman says DCIS is not an emergency, I’m glad that my doctors felt I should have immediate surgery to eradicate any chance of that pre-cancer becoming cancerous.

To me, the nomenclature isn’t really what’s important here – call it pre-cancer, call it a lesion, call it cancer, whatever.  The fact of the matter is that no one wants to know that there’s something abnormal going on in their body.  It’s scary and creepy, and when given the choice, I don’t think it’s over-reacting or “hysterical” to want to get rid of it, not just treat it and hope that treatment works.  Especially if you’re BRCA+ – you’ve been waiting for the moment when someone tells you that you have breast cancer – whether it’s stage 0 or stage 4.  The reaction is the same – crying, anger, fear, panic – so it doesn’t really matter if you call it pre-cancer or cancer.

One thing to consider is this: Who gets to say they have/had breast cancer?   When you say something like that to people, you get a certain type of attention – whether it’s sympathy, pity, empathy, etc – you get something from that, and some people need/want that attention.  I am not one of those people – when I told my family and friends of my diagnosis, I specifically said, “do not get me any pink ribbons” – while I use my experience to advocate for genetic testing, I don’t want any sympathy because I had DCIS – I don’t need to announce it with a magnet on my car or with a rubber bracelet.  But I think for some people, it’s important to get support when they’re going through something like this regardless of the stage of disease.  Pre-cancer or cancer – people deserve that support, especially from others who have had breast cancer.  Calling DCIS a lesion could take away an entire support network from someone who really needs it.

I admit, if it comes up in some way, often it’s easier to say “I had breast cancer,” rather than, “I had pre-cancerous cells that were likely to become invasive because of my genetic status as BRCA positive” – although now sometimes I can just say, “I have that Angeline Jolie thing.”  I guess for me though, being BRCA+, there is no doubt in my mind that Stage 0 would have become invasive had I only treated it with hormones or had a lumpectomy.

I came about an inch away from cancer, and when you get that close, does it really matter what you call it?