How Do I Help Her?

daved931

This is probably going to be a little long, but if anyone is willing to read it and offer some advice, I could really, really use it.

I guess I'll start with background...  I've been seeing an amazing woman for almost three years now (June 17th marks three years).  She is the absolute love of my life and the reason I smile.  She keeps me on an even keel and makes me a better man.  

She had melanoma at a relatively young age and, to make matters worse, she was pregnant with her son at the time.  Doctors were able to save her son, remove the melanoma and treat her.  The end result is a scar on her upper inner thigh and a leg that is swollen more often than not because of the lymph nodes they removed.

She has regular mammograms, gynecological visits, etc.  Last year they found a lump in her right breast.  It was precancerous and it was removed.  A month later they removed what was thought to be a risky mole on her shoulder.  Now she has mammograms every six months.

Today, she went to see a woman that specializes in womens breast health for a mammogram and an overall check up.  My girlfriend likes this woman very much and is very comfortable with her.  This is also the doctor that removed the lump from her breast.  The doctor recommended today that my girlfriend get a test to pinpoint a "cancer gene."  If this gene is detected, it means that her son and her sister should be tested for the gene as well.  According to this doctor, it also means that she should have her ovaries removed and begin taking a medication that greatly reduces the risk of breast cancer, but may cause hair loss, blot clots and other bad things.  

I'm trying to be very positive for my girlfriend because she's almost certain that she's going to die a slow death from cancer.  My concern (that I keep to myself) is that she's going to have this damn gene.  Her sister had breast cancer two years ago, her mom had colon cancer, her cousin died of ovarian cancer and another relative had a vaginal melanoma which ultimately resulted in death, even after doctors removed all kinds of bits that I would imagine most women would prefer didn't have scalpels near them.  

Here's where I need the advice of probably both men and women going through this sort of thing.

1)  As a guy, I absolutely fear the idea of losing my testicles.  It would mean the loss of testosterone which means no more sex drive, probably no more proper sexual function at all and the end of my powerlifting career.  Scary stuff.  I have no idea about stuff from the female point of view.  Is losing your ovaries a huge deal if you've already had kids and are past child bearing age?  I would assume losing any part of your anatomy is traumatic, but is more like having your appendix out or is it a really, really bad thing?  I'm sorry if this sounds like a dumb question, but I'm curious.

2)  What is the best way to be there for her?  Do I dote on her or do I try to maintain some normalcy and treat every day like a normal day?

3)  I don't want to sound selfish, but what could happen to our sex life?  Right now we enjoy an amazing sex life.  Obviously getting her well again is priority one, but once this is behind us, how do we get back to being physically intimate?  If she ends up losing her ovaries, could she lose her sex drive and see me strictly as the person in the house that opens jars and changes the oil?  

4)  Am I being an alarmist?  She hasn't even had this test yet and I'm writing it off as a foregone conclusion that she's going to have this gene.  I would never tell her that I think that, but I'm trying to mentally prepare myself to be there for her.  

5)  Any other things I should know?  My girlfriend means more to me than I ever thought anyone in this world could.  I want to make her feel safe, loved and cared for.  Any advice would be greatly appreciated.

If you're still reading at this point, I genuinely thank you.  I'm this sort of "man's man" (working on cars, Schwarzenegger movies, powerlifting, guns) and I don't know what to do with myself when I can't just fix something.  Having something be so far out of my control is not only foreign, but scary as hell.

Many thanks,

Dave 

saint

Hugs Dave----I have always said I'd rather be the one WITH cancer than watch a loved one battle it!

First---you sound like you truly love, like & care about her in all ways. IF that is true you will weather the storms whatever they are.

Second---you didn't give enough info about the genetic test. Counseling may be a good thing b4 genetic testing (it is my understanding that they will NOT perform these tests on children--son would have to wait years) Know that a very small percent of ppl (about 8%) test positive for the the genes.

Third----you did not give your ages, but as for the sex...love finds a way. I'm not saying it will be easy, but there are tons of things that can help if this all results in a problem...I will pray that none of these worries will ever be legitimate for you!

Lastly---only you can know if she is the type that wants pampering or seclusion. I strongly suggest you follow her lead AND most importantly: TALK to her.....reassure her of your feelings & that YOU are part of all this! Pleez come back with updates & let us know how it goes.

Be well & stay strong

daved931

Saint:  Thanks for the speedy response.  

I did forget to mention that she has to visit with a counsellor before the test is performed.  They want to be sure that people are able to deal with a positive result before they undergo the test I guess.  My girlfriend is probably the toughest woman I've met and she wants to take the test, so I'm sure the counsellor will green light it.    

Her son is away at boot camp for the US Army right now, so he's probably old enough to undergo the test.  She has yet to tell him about this as he needs to concentrate on his training.  Obviously, I respect her wishes.  

There is a (relatively) large age gap between us.  I am 27 and she is 42.  Talk about May/November, right?  It's certainly unconventional, but we connect in a way that continues to amaze me on a day to day basis.  She also looks way to good to be with me, so I thank my lucky stars for her low standards.  

Thanks again for your response.  If anyone reading this could see me right now, they'd probably laugh at the irony.  I'm a very physically powerful man and I'm sitting on the couch with my eyes welling up and feeling totally powerless.  The news that only about 8% test positive makes me feel a lot better though.  I've been reading as much as I can on here for the last hour or so and I'm hoping that, the more I learn, the better I will be able to cope with whatever comes down the road.  

BrilliantInCa

Hey Dave,

Interesting how you mention counseling - here in San Francisco Bay Area there's a genetics class first, then  an appointment with counselor for detailed family history tree, then test itself, then results - but no 'counseling' per se, just explanation of common choices people can make if/when presented with results. When asked why takes so long, 'counselor' said that, by coming back so many times, you show that you're 'stable' enough to handle bad results, if any - which is the stupidest thing I've ever heard, if you ask me.

What we were also told that yes, although very very small percentage test positive, if you do test positive and decide to undergo drastic measures such as removing ovaries, etc., that still doesn't guarantee that you completely eliminate the risk.  Hmmm, I don't think that's what you wanted to hear, but I thought I'd mention what I've heard when my mom was going through her genetic testing last year - both of her BCRA1 and BCRA 2 are positive, so it was recommended for my brother and I(we're in our 40s and 30s, respectively) to go through the testing ourselves. 

Is there  point to this, you say?Scientists themselves admit that genetic testing is largely a game, and many debate usefulness of it. Whether your girlfriend takes it or not isn't important, I think - what's important is that your love for her can and will help her through whatever she needs to go through. Stay strong - maybe not for yourself, but for her, you know?

Now I am going to get off my high horse and watch reruns of 'Golden Girls'..

saint

Dave--one thing you will learn on this site-we never laugh at tears!

Makes no difference what you LOOK like........maybe that is one of the biggest lessons of bc. I was a "babe" but never knew it (odd upbringing-won't go into it) until I was in my 40's. Cancer has really taken it's toll on me physically, but because my man still looks at me the same way & loves me so deeply, I never really seem to notice what I have lost (or gained! LOL)! Every once in a while I catch a glimpse of myself in a mirror b4 I realize it's me & that's when it hits me full force. My point in telling you this is to help you see how a strong love can make so many bad/tough experiences easier....inner beauty will endure past the physical decline IF it is well & truly nurtured. In spite of my situation, I am truly happy & that is due in large part to the love that man showers on me! I'm blessed to know I could look like the Elephant man & he'd still hold my hand & smile at me in public!

As brilliant said--even if she HAS the gene it doesn't mean she is guaranteed to get cancer. Take it one step at a time & try to focus on what is most important-- being happy together.

Be well & stay strong 

daved931

Thanks for your replies and well wishes.  We spent a day on the couch yesterday and watching all kinds of horrific chick flicks, which made her feel really good.  I even suffered through Mama Mia.  At least Steel Magnolias has funny stuff in it.  

Chin up and straight ahead.  There seems to be a great group of people on this forum.  What I've learned from reading your replies and other threads has made us both feel better.  I find it much easier to deal with things once I have a better understanding of them.   

nancypat

Hi Dave931, I have to smile reading your post because you remind me a lot of my youngest son (power lifter, ex football player, rugby player)  You don't have to change who you are just open yourself to who your partner is and what she needs right now.  Managing the chick flicks is a good start.  Maybe you can throw Arnie in every once in a while because it is about the both of you. 

I don't know enough about the genetic testing to advise you there but it looks as though you have already gotten some good advice.  However, I lost my ovaries at 43 and actually it made things better for me because I lost the fear of getting pregnant.  I already had three children and it was a novelty for me to be able to give myself over to wild abandon.  My present husband is quite a few years younger than myself but he loves me as I have never known before.  What is in my head is the most important thing to him.  We are best friends and he is my other half. 

I know it is normal for a man of your age to grieve the loss of sex (and you do not know that is going to happen) but wouldn't you grieve more if you lost the love of your life.  Love and sex are not synonymous and some people would argue with that.  Sex is a release but true love is eternal and priceless.  Hold on to her as tightly as you can and never let her feel as though she is any less a woman because of her dx or any of her anatomy that she may lose.  This will be the making of you.  I wish both of you well.  There are going to be more scary times but there are plenty of great people here to help you through it.

Nancy

daved931

Thanks, Nancy.  I'm not overly concerned about the loss of love life and, as you say, we may not even skip a beat.  Making sure that she is healthy is my number one goal.  If we do take some time off from the physical intimacy, I just want to be sure I know how to make her feel comfortable with herself and ease her back into things.  

Sometimes I think I'm putting the cart before the horse, but I'm one of those people that has to know [i]everything[/i].  It's tough to be the knight in shining armor when you don't sh*t about what you're fighting.  

nancypat

You are welcome dave931.  After reading your last post, I'm not so worried about the two of you.  It seems as though you have your partner's best interests at heart.  You sound like a caring, sensitive man.  I am glad both of you are reading these threads.  Not only are they informative but there are also some pretty big shoulders here.  You are absolutely right to be researching everything you can.  Mum used to say.  " Forewarned is forearmed."  I would suggest though that you take each day as it comes and deal with what you have to deal with that day.  Sometimes the whole picture can seem incredibly huge and daunting. 

I would also encourage your partner to do everything possible to fight this beast.  I am so glad she has a good rapor with her doctor.  That is gold!  Do you mind me asking the name of the medication her doctor wants her to begin taking?  I imagine that would be if she chooses to have her ovaries removed.  The reason I am asking is because of the SE's of that particular medication.  I am bald from chemo and will be on Arimidex for 5 years following my last round.  I do not expect to be bald for that length of time. 

BTW, if you lost your testicles at your age, you would not cease to function.  You simply wouldn't have any sperm.  Same goes for your partner.  She just won't have any eggs.  Our ovaries are not our only source of hormones. She will, however, go through early menopause.  But, I am not a doctor and the best place to go for her to have those questions answered is her doctor.  I truly hope your partner is not a carrier but if she is, I expect you will cross that bridge when you come to it.  I am wishing you both the very best!

Nancy 

daved931

My girlfriend went back to the doctor today and she has been referred to a counselor to undergo an evaluation prior to her genetic test.  Her doctor has prescribed a medication for her to take that is supposed to greatly reduce the risk of cancer.  I cannot remember the name, but I will find out when she brings it home.  She was warned that it may cause her hair to thin.  I think she's more concerned about that than anything at this point, ha ha ha!

In an unrelated issue, some guy she works with has been sexually harassing her.  Dirty e-mails, pictures and invitations.  I don't think she told me for a while because she was afraid that I would come through the wall of his office like the Kool Aid man and then eat his liver.  I told her to talk to her boss about it.  She, of course, is afraid to complain because it would mess up the relaxed atmosphere of her workplace where adult jokes are sort of the norm.  I told her that she doesn't know how many other women this sleazeball may be bothering and she should speak up.  She was still afraid to rock the boat, so I asked her to give me a couple of copies of the emails and tell me where this guy's wife works.  I faxed the e-mails to his wife.  Things have quieted down quite a bit now.  

nancypat

Hi Dave & Partner!

Of course your partner is concerned about her hair!  We would rather have a bad hair day than a no hair day. lol.  How is she holding up?  I'm glad you handled her "situation" at work in the manner that you did.  You can't be going Hannible on anyone.  I think your partner is quite shy but if she ever needs anyone to talk to, I am here.  I am wishing you both a serene weekend.

Nancy

daved931

Thanks, Nancy.  Much appreciated.  She's been talking her sister who went through breast cancer not too long ago.  They're about as close as two people can be, which is a good thing right now.

The drug the doctor is putting her on is tamoxifen.  I know of it from my years at the gym as Nolvadex.  I know that men use it following a steroid cycle to get their hypothalamus to kickstart natural testosterone production and to reduce aromatization of testosterone (leading cause of "b*tch tits" in bodybuilders).  I have no clue what it does to women other than sometimes it is prescribed to help women with fertility issues. 

Google tells me that it binds to cancerous breast cells and prevents them from dividing.  That sounds like a good thing to me.