Mets to bone after 5 years - damn!

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Its been awhile since I was on this forum.  History looks like this:  in 2004 at age 44 I was dx'ed with DCIS and small invasive tumor in left breast, stage 1.  ER+.  One of my docs said if there were such a thing as stage one half, I would have been it, because invasive tumor was so small.  Lymph nodes clean on sentinal node biopsy.  Had mast on left side, DIEP recon.  Went well, back to work, NED.  Was on Tamoxifen since 2004, but had horrible side effects from it -- the worst by far was one that I don't hear talked about too much, which was complete loss of my sexual response.  My sexual function went from being normal and good prior to cancer, to being very low response after 6 months on tamoxifen.  About three years into it, that dropped to zero (no ability to climax, no normal sexual response whatsoever).  So although I was feeling pretty well otherwise, this side effect had an enormous downside effect on my quality of life.  Although my husband is understanding and loves me, the intimacy in our marriage has nonetheless taken a big hit.

One other bit of information:  2 yrs after my mast I was tested and found to be BRCA2+.  Was very sorry they hadn't tested me earlier, as I would have done a bilateral mast.  Didn't want to do prophelactic mast on remaining side because I don't want an implant, and don't want a prosthesis, and belly donor site was gone from first DIEP.  Didn't want to mess with other parts of my body (butt or thigh) for donor tissue yet.  Plan was then to follow up with aggressive tests of one sort or another every 3 months, but to date all has been clean.

I was scheduled to be done with Tamoxifen next month, and was looking forward to seeing if any of my sexual response would return.  But the cosmic joker of life seems to have other plans for me.  I went in to see my onc for my 6 month check up, and reported that I had lower back pain and had lost my appetite.  My tumor blood marker was elevated, so the onc ordered a bone scan.  Came back positive -- diagnosis:  mets to the bone, in my pelvis, lower spine, and a few spots on the rib.

Damn!  I went from dancing with NED for five year to now being Stage IV.  

I will have a bone biopsy on Monday to determine course of treatment, which could be chemo, radiation, or oral hormonal therapy, depending on what they find.

They will likely give me injections to make me menopausal (at 49 I'm close to it anyway, but not quite there yet) so they can give me post-menopausal hormone therapy (Arimidex or another one -- can't remember the name).  I have heard anecdotal stories from friends that these meds can interfere in sexual function just like the Tamoxifen did.  Given that my response to an estrogen blocker like Tamoxifen was so bad, I'm not optimisitc about these other meds.  Anyone out there with experience to the contrary?

Of course, being alive trumps everything, and as you can imagine I am devastated by this news.  What is so very strange is that this scenario just wasn't even on my radar screen for worry.  I knew that because of my BRCA2+ status, I am at high risk for a new primary in my remaining breast (40-50% lifetime risk).  But my numbers for risk of recurrence from my original cancer were only 5-10% lifetime risk -- I wasn't even worried about this prospect, yet that is what has happened.  Damn, damn, damn!  I feel like I've snatched defeat out of the jaws of victory...  I figured since they check me so often because of my gene status, that if I developed a new primary they'd catch it early and I'd have to go through some nasty treatment, but would likely survive.  But I just didn't figure that the low risk of mets from the first go round would get me.

I know there are treatment options that could keep me alive for a good number of years, but I am still in a state of shock and heartsick.  I am not afraid to die, but I am afraid of what I might have to live through before I get there.  Mostly I'm afraid of missing things:  I have two daughters (teenagers), and I so want to be there to see them graduate from college, get married, and have their own children.  

My husband's response to my dx was to be angry at the cancer.  I am not angry, but I am overwhelmingly sad.

Orchid

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Comments

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2009

    I'm so sorry that you got this news.  I'm just in the early stages of my treatment (week 7 of neo-adjuvant chemo) but I wanted to respond and keep this topic active.  There has got to be someone out there who can add there own positive experience.

    I'm going in for the BRACA testing in a week. Bad family history.  Your post touches some hurtful memories of my sister.

    Come on ladies!  Can we hear from someone who can tells us good news?

  • LRM216
    LRM216 Member Posts: 2,115
    edited October 2009

    Orchid:

    Can't give anything informative to you in this post, but I do so want you to know that I am so sorry that you have to endure this.  One would think that after five years that they were relatively "safe" - or so they would have us believe. 

    I hate this disease with a passion.  It has no rhyme or reason.  God bless, Orchid, you are in my thoughts.  Please keep us posted.

    Linda

  • rumoret
    rumoret Member Posts: 685
    edited October 2009

    I am glad you posted and expressed your anger. So often I feel that many of us (including myself) are still keeping our anger bottled up in hopes that we can stay far ahead of this Beast. Your story will alarm many of us early stage breast cancer sisters.......we often want to feel cured.....and we walk softly around breast cancer.

    I was not planning on logging on to the boards today.....but something moved my mouse toward my breastcancer.org bookmark and before you know it.....I saw your post. I actually thought about skipping on by.....you know....walking softly around breast cancer today. Even so.....I decided to open up the thread and read your brave post.

    Anyway, I recommend that you find the INSPIRING STORIES thread on this site and read through the posts. I also hope someone will come along and give you the answers you are searching for. I do believe that bone cancer can be treated successfully for years and if it has to go somewhere the bones would be the best location.

    In regards to your husband being angry at your cancer.........well he is normal.......afterall he was right there with you feeling great until this Beast decided to interrupt your lives again. We only have to put the shoe on the other foot to know how our spouses feel.

    Orchid.........I just love your name........stay strong and fight the beast and do not loose hope. We sisters will always be here for you and if you need to talk....just shout it out on these pages and we will come running to your side. And don't hesitate to email me privately should you feel the need to do so.

    Hugs to you sweetie,

    Terry

  • spar2
    spar2 Member Posts: 6,827
    edited October 2009

    Orchid, so sorry this has happened to you.  My best friend is a success of bone and liver mets, she is now cancer free and went from 3 chemos to only 1 and  it is an oral one.  There are so many good treatments out there today.  Fight like crazy and be around for your daughters marriages.  Terry is right, we will always be here for you.  God bless. sending hugs. Sherry

  • orchid
    orchid Member Posts: 40
    edited October 2009

    Sherry, Terry, Linda and AnacortesGirl:

     Thanks so much for the good wishes.  I'm up and down right now, and I hope I'll hang in there with a good attitude.  I can't tell you all how much I value the support that comes from this forum.  Thank you all for being there.  I know you've all walked in my shoes, or shoes that are close enough to mine to understand what I'm dealing with.

    Love to you all, and thanks.

    Orchid

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited October 2009

    Orchid,

    I am so sorry you have to deal with this awful disease again. But...there is hope. First thing..its in the bones only..which is way better than having it in your organs. I also have mets to bone and I will share my experience.

    I was diagnosed with stage 2B ILC in march, 2003. I had a lumpectomy and had 9 nodes removed, 2 were positive. I took chemo, rads and tamoxifen. I had horrid side effects from tamoxifen also. My worse SE was severe muscle cramps/spasms. I had them every 15 minutes 24 hr a day. I couldnt think at all. After 11 months on tamox my onc and I decided it was best if I went off them. My onc feared I would get blood clots and I was a mess from getting no sleep. I tried Arimidex for 2 weeks and I was a total zombie. I could  just barely care for myself. We decided to go off of it also.After that, I went to have check ups every 3 months. My bloodwork was always fine. In dec 2006 I had lower back pain that progressivly got worse. I woke to use the restroom and my legs just gave out. Hubby took me to ER and my mass showed on a regular xray. I had a tumor the size of a large marshmallow on my 5th lumbar. They did a biopsy and it came back as ILC mets. I was started on Zometa to help heal the damage to the vertebrae and went on Aromasin. My onc and I both agreed..no matter what I would have to take Aromasin or something like it. I did get some rads. After 9 months the tumor had shrunk and was no longer visible on scans. I still had tons of pain but it was fairly under control. 2 months ago I noticed my pain was getting worse and my onc ordered a MRI and a PET. The scans showed a small amount of activity in the same spot. Since I couldnt have rads again in that same spot, I got surgery instead. I just had it done wed but I am feeling lots better and am thankful I had it done. The important thing.............my oncs told me if we keep it in the bone and slam it as it peaks its ugly head...I could live a near normal lifespan. With all these new treatments etc..they really dont know how long a person could be around.

    I am on disability but I do okay I guess. I cant do alot of things I would like to but am thankful I am alive and have a fairly good quality of life. You may have to make some adjustments to how you get things done..but it can be done.

    To answer about the sex...the tissue on the inside is so thin and sensitive that I cant have sex without a huge amount of pain. Its not lack of lube etc...its just too sensitive.

    I hope this helps and God bless.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited October 2009

    Oh and............its okay to be angry with cancer.

  • orchid
    orchid Member Posts: 40
    edited October 2009

    Mazy,

    Thanks so much for the note and words of encouragement.  It sounds like cancer has dealt you a rough hand.  But I appreciate hearing that you are plugging away and making a go of it.  I know I have to muster the courage to do the same.  

     I am fearful about the side effects of the meds they are likely to throw at me.  I have my bone biopsy later today, and once we get the results of that we will know more about what choices and options I have.  

     I'm sorry to hear about the sexual problems, but I'm not surprised as I've heard similar accounts from others on these meds.  I guess I'll just have to wait and see what happens.  If you're comfortable answering, may I ask how this has affected your marriage?  This is something I've been trying to figure out for awhile.  My husband and I are married 21 years, and we have a strong marriage.  He has always been supportive and has been right by me every step of the way with cancer and all my treatment.  But since being on Tamoxifen, I've become like a man with ED, and our sex life has gone down to virtually zero.  I could take care of him and his needs, but he wasn't into it if I wasn't "present" along with him.  Sex just made us both sad because we both knew what I was missing.  So we were biding our time till I got off of tamoxifen to see if any of my function returned.  Now I won't be on tamoxifen, but the replacement therapy has the potential to be equally as bad if not worse (i.e., it could cause so much pain that I might not be able to take care of him, at least not vaginally).  I hope you all don't mind my frankness, but I don't find much discussion about these issues and it is such an important part of quality of life.  When I first started raising questions about my lack of sexual function to the docs, they all scratched their heads and said they'd hardly heard of this problem in conjunction with tamoxifen.  It took me 3 and a half years to find a doc who knew what the heck I was talking about.

    Hugs back, and thanks again.

    Orchid

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited October 2009

    Sorry you had to join us. I think there are many stages of emotions for this disease.

    S*x life? what is that? Lost mine, I try to work on it. Lots of replens. I don't know if mine is chemical or a combo of chemical and physical. Losing a breast, scaring, and now mets, I just don't feel attractive anymore. 

  • Grakenmom
    Grakenmom Member Posts: 169
    edited October 2009

    {{Orchid}} I wish I had some comforting wisdom to give you, but I am rather new at this entire scenario. Please know that I hope and pray for only the best for you, and wish you strength and courage.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2009

    I'm torn between adding my thoughts or not.  I'm only stage 3 (dx July) and no mets.  So I haven't hit that emotional bang and I don't have any experience with the txs.  But I did go through it with my sister. Sort of. 

    When she was diagnosed with bone mets just after she finished her 5 years of tamoxifen her decision was to not do anything and not talk about it.  All she would tell me is that she wouldn't go through chemo again.  But it was her decision and I knew I could surely support her since her husband, who loved her dearly, was there everyday supporting her.  And it was through him that I learned some of the options that she could have taken.

    What I have learned since is that we deal with this thing for ourselves but, what I have since learned, is that we also deal with it for others to some degree.  How high of a degree is so very, very personal.  It hurt me and I saw the hurt it caused my niece, brother-in-law, mother, etc. But we loved her and supported her.  And I think it's made me a different person.  What will I do if I get mets (and her path report and mine look almost identical)? I'm pretty sure I'm going to put up a fight.  Can't tell you how long or how hard but I think I'm willing to show myself that I am important and those people who love me are important. 

    This May my mother was diagnosed.  She told me first because she said she needed to make the decision of whether to go through treatment or not. She 80 and has marital issues.  She's still feels guilty about the cancer in her family and that it took her daughter before it took he.  Two days after the conversation I was finally able to tell her the words "it's your decision I'll support whatever you decide".  She appreciated those words deeply.  Three days later she called me after going back to the onc and told me that she decided to go ahead with treatment.  That hit me hard with such a feeling of relief.  Three weeks later she has her lumpectomy and there's no lymph node involvement -- just radiation to finish her treatment.  Then it was 2 months later and I was getting a surgical biopsy.  She is here and helping me now.  I am so grateful. 

    My DH is also with me every step of the way.  But talking to the women who have gone through it means so much.  I would give anything to have my sister here, also.

    Those people around you love you very much.  And they can give a lot if they are just given the chance.  As my sister told someone: "What do you mean get back to normal?  This is normal."

    My thoughts are with you.

  • orchid
    orchid Member Posts: 40
    edited October 2009

    AnacortesGIrl,

    Thanks so much for sharing.  I know these are very difficult issues.  But I have to ask -- what was the outcome with your sister?  I presume she is no longer with us?  If not, how long did she last with no treatment?

    Orchid

  • cagio1
    cagio1 Member Posts: 23
    edited October 2009

    I too am so sorry that you got this news.  It seems like you have done everything right and then you get this news.  It must be like getting socked in the side of the head.  Know that I am thinking of you and pulling for you.

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited October 2009

    Orchid,

    In all honesty....my husband says he would rather have me and no sex than not to have me. This is one of those things that happen sometimes. We cant help that it happened. Big hugs...Mazy

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2009

    Orchid,

    It was about a year from the time the mets came back and when she passed away.  Since she wouldn't take about it or try to share I don't know much about her medical treatment during that time.  My BIL tells me that she was on some maintenance chemo but it wasn't much. 

    It was way too quick.  And it involved a lot of pain so the meds got pretty intense. 

    You can do this.  You can get a lot more life.  Those people around you really can help and will love you deeper.

    AG

  • MJLToday
    MJLToday Member Posts: 2,068
    edited October 2009

    Orchid, it's OK to be mad.  Really.  What happened to you should happen to no one.

     The aromatase inhibitors (AIs) can be good treatments, however they will probably interfere with your sex life even more than the tamox, I'm sorry to say.  They take you even further down the menopausal path, especially combined with Lupron or Zoladex to suppres your ovarian function.

     I

  • Janathan
    Janathan Member Posts: 121
    edited October 2009

    Orchid,

    I haven't had mets so can't relate to that but am so sorry to hear your news.  I was diagnosed with DCIS on the left in 2002, had lumpectomy, rads x6 weeks and Tamoxifen x5 years. I thought the odds were on my side until May 2009, 6½ years later, when I managed to draw some unlucky cards and have a new occurrence in the opposite breast.  Had BMX in July.  I tested BRCA1- and BRCA2-.  I know my diagnosis was "only" DCIS both times and the odds are in my favor again, but it still scares the living daylights out of me that somewhere down the line I'll have a recurrence somewhere.  I hate this disease.  My stepmom has stage IV cervical cancer.  You and your family are in my prayers, Orchid.  Wish I could do more.

    ~Janathan

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2009

    Are you flippin' kidding me?????  Mets after 5 years with a stage 1 dx and no nodes?  Aaaargh!  I can't even wrap my mind around that!  I was stage 1, BRCA 2 pos, and had my healthy breast removed 6 months after my first mast, just to be safe due to my genetic status.  What I count on is that I won't have a new primary since there's little to no tissue left.  But mets from the first dx?  Good grief!  Did you do chemo the first time, Orchid? 

    Tamoxifen is murder on the ol' sex drive.  I feel for you there, sister.

  • orchid
    orchid Member Posts: 40
    edited October 2009

    Sadly, no I'm not kidding.  Sigh.  I wish I were!  I had the exact same response you did, Emily.

    I did not have chemo the first time around, because the potential benefit did not statistically outweigh the downside and potential damage.  Now I'm wondering if it was the right choice. 

    I know that being alive trumps everything, but I'm disheartened by the prospect of AIs messing up whatever shreds I may have left of a sex life, for as long as I live.  I feel like this disease just keeps taking little bits of me, leaving me with less and less of my body, my energy and quality of life.  Life on Tamoxifen has felt like a very castrated life.  And it just SUCKS that I feel like if I survive this new round of mets, I will have to feel GRATEFUL for whatever scraps of my life are left.  Damn, damn, damn....

    Sorry, I don't mean to sound so pessimistic, but last time I felt like all the choices were bad.  This time I'm starting to feel like the choices are even fewer, and are worse.  Sigh.

    Thanks for all the encouragement, ladies, despite my rant it is much appreciated...

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2009

    I'm so sorry Orchid.  It really sucks that you've got to deal with this.  My heart goes out to you.  Take comfort in knowing there are many, many women who are living well with bone mets.  My son's drama director was dx several years ago as stage IV with bilateral bc and bone mets to the pelvis and leg.  She's one of the most active people I know!  It really hasn't slowed her down, and she's a real inspiration.  So, yes, you can live long and well even with bone mets.

    I'm with you in spirit as you do what you need to do to kick some butt!

    Wish I had something encouraging to say about the ol' sex drive....

  • pitanga
    pitanga Member Posts: 596
    edited October 2009

    Dear Orchid,

    I see this thread has been around for a while but I did not find it until today.

    First let me say that I can relate so much to your feeling of betrayal at receiving a mets dx just when you thought you were home free. I was dx´d with local recurrence and bone mets 9 years after initial dx. And I see so many other women on these boards who also made it past the 5 year mark and still got mets. I don´t know why doctors insist on telling us that after 5 years we are cured. Seems like a big fat lie to me.

    About tamoxifen... It made my libido  take a nosedive, which created all kinds of problems in the relationship I was in at the time. I was also working on my PhD and my father had just passed away from lung cancer, and the stress from that certainly affected me too. Tamoxifen also gave me a growth in my uterus that my onc believed could have been a sarcoma. It kept growing and he wanted me to have a hysterectomy, a traumatic prospect given the problems with intimacy I was already having. In the end I chose to keep my uterus and stopped the tamoxifen, having been on it for 4 years. That was when it became clear that the thing in my uterus really was a fibroid because it immediately started to shrink. But my relationship had already disintegrated. I still have a lot of residual anger and sadness from that experience. Now, following my recurrence & mets dx, I have had a mastectomy and am on  Zoladex injections and Arimidex. Sex is the last thing on my mind. Certainly part of that is the total estrogen deprivation, but I have also been struggling with employment and a few other health issues, so it´s hard to know how much is hormonal and how much is stress. I am not in a relationship and the idea of dating is just unimaginable with a metastatic cancer diagnosis in the picture.

    There are a number of ladies here though whose partners have been supportive through thick and thin. And some have been able to keep the mojo workin' (there is a huge thread on the subject in the Moving Beyond Cancer forum). And Mazy is right, when metastases are only in the bones they tend to be more manageable since they do not involve vital organs. My mets are to my cervical spine so they couldnt be biopsied. Since yours can, the path report may give important info that can help in choosing the most effective treatment.

    All my best to you,

    Lisa 

  • marshakb
    marshakb Member Posts: 1,664
    edited October 2009

    Orchid, sorry to hear of your diagnosis.  Unfortunately too many people take being stage o, 1, or 2 as being in the safe zone.  My onc said statistically it looks better but anytime you have cancer cells in your body, they can go anywhere.  So I am sorry this happened to you, like a slap in the face.  I was on tamoxifen when I got my mets dx (liver/bone).  Chemo had stopped my period and in hindsight I really should have pushed to have my ovaries shut down then and gone straight to an AI since I was 46 and didn't NEED them but.........

    I wanted to address the sex issue with you.  After my bi-lat, going bald, and taking tamox, my sex life was in the toilet.  My husband is very supportive and said the same as many here, I love YOU, sex is secondary.  Well, that's fine and dandy, but I LIKED sex.  Anyhoo, after the mets dx I went on Femara.  Once I got over rads to several bone areas and surgery to my femur, my libido started screaming at me.  Even though my body was not interested, my heart was.  I visited the MOJO thread and came away with some good advice.  Work it or lose it.  I ordered the Magic Wand and let me say, OH MY!  In less than one minute, by myself and thru my clothes (too much info?) I had the big O.  I about passed out!  LOL  So everyday for a week I took care of that.  Which then led to me being able to add my spouse to the mix.  LOL  I still have some problems (I have horrible self body image issues) and we don't do it as much as before but I at least try now.  Hubby pretty much leaves it up to me on when I want to try.  Hope this helps!

    "but I am still in a state of shock and heartsick.  I am not afraid to die, but I am afraid of what I might have to live through before I get there"  This Is exactly how I feel!

  • orchid
    orchid Member Posts: 40
    edited October 2009

    Dear Lisa and Marshakb:

    Thanks so much for sharing your experiences.  I appreciate your frankness, and no, marshakb, its not too much information.  One of the very, very frustrating things I have found in my breast cancer journey is getting good information and comparing experiences about sex.  When I was originally dx'ed at 44, it took six months for me to realize, but I finally figured out that the absolute worst damage this disease did to me was rob me of my sexualtiy.  I have had a strong sexual appetite all my life, and oddly it wasn't the appetite that I lost.  My mind still wanted (and even now still wants) sex, its just that after Tamoxifen, my body didn't comply or respond.  It happen slowly, but after six months I realized that my responsiveness had dropped.  My sensation was greatly diminished.  If my normal experience prior to bc was a 10, after six months it was about a 3.  At that point I could still have an orgasm, but it didn't feel like much and wasn't very satisfying. 

    By three years into being on tamoxifen, that 3 dropped to zero.  I (or my husband) can manipulate my clitoris as much and as long as we want, but nothing happens.  Its like trying to turn the ignition on a car, but the car won't turn over. Vibrators don't help.  I haven't tried Zestra yet, but I should order some.

    Now, of course with the mets dx my biggest concern at the moment is staying alive -- no question.  Sex or no sex, I still want to be here to see my daughters graduate, get married, and have their own kids.  But as for my quality of life, the biggest hit by far has been loss of my sexuality.  I feel like the last 5 yrs on tamoixfen I have been living a very castrated life.  

    Anecdotally what I hear from friends on AIs is not promising as far as any improvement.  My spouse is incredibly understanding, but I don't want him to be banished to a sexless life as long as I live (I'm willing to take care of him sexually, but he's not really into it if I can't be "present" with him -- feels too one sided and he feels my sadness at not being able to respond).

    Just an update on my dx situation:  the first bone biopsy proved inconclusive, so yesterday they did another one.  I hope to get results by Monday, at which point we'll know whether chemo or AIs are the next step.

    Orchid

  • yellowfarmhouse
    yellowfarmhouse Member Posts: 279
    edited October 2009

    HI girls,

    Sadly all the treatments and AI for 4.5 years has taken a toll for me too. It is starting to become more and more on an issue in my marriage.  My husband says the same thing... that it does not matter.  We've tried to be creative but like Orchid said he feels it is too one sided -- I think men want us to want/need them rather than just have their needs met.  I am approaching the 5 year mark and have to decide about continuing on Arimidex.... it's so hard... I feel like I have to do everything I can to stay alive for our 5 kids but quality of life is issue too.  And sometimes I don't really truly trust the meds that they give us  -- that they won't have other long term effects. 

    Thanks for posting.  Wishing you all well,

    Wendy

  • marshakb
    marshakb Member Posts: 1,664
    edited October 2009
    Wow this is getting alittle intimate but I do think it is important.  Orchid you said "I (or my husband) can manipulate my clitoris as much and as long as we want, but nothing happens."  Exactly my case, no feeling for me, you might as well be rubbing my arm, and complete dryness.  Again, I ordered the Magic Wand, not thinking there was a vibrator out there that had that much zing to it but.... wowser.  Its good too for achy spots all over the body.  I did NOT believe the MOJO girls when they suggested it but they were spot on so to speak LOL.  I still need it but at least we can use it together.     http://www.hitachi-magic-wand.com/   
  • orchid
    orchid Member Posts: 40
    edited October 2009

    Thanks so much to all for your frankness and for sharing.  I was really pretty astonished when I broached this issue to my docs and they kept telling me that they had not heard any of this from other patients.  I figured I couldn't be the only one out there who was having this experience, but I slowly realized that if women were experiencing this, many simply weren't talking about it.

    Marshakb, many thanks for the link.  I will check it out.  So far vibrators have not done much for me, but hey, I've got nothing to lose except a few bucks, so why not give the wand a try.

    Orchid

  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2009

    Orchid, so sorry that this has happened to you and it just is sobering for me to realize that this potentially could happen to anyone of us, me included at any point in the future.  I understand your sexual concerns completely.  Starting out with similar stats to you, having gone through lumpectomy, SNB, node -, radiation, and now almost a year on tamoxifen, my biggest upset was what this would do to my sex life.  I've always enjoyed my orgasms!  I already was perimenopausal and having skipped periods, hot flashes, and vaginal dryness, along with diminished orgasmic intensity even before I started on tamox.  My gyn had recommended phytoestrogen pills, which had soy, black cohosh, and vits. & minerals in them and they worked wonders for all my sexual issues and the hot flashes.  After being diagnosed, the most devastating thing was that I could no longer use these.  With the tamox, I developed much worse hot flashes, which I could have tolerated if the sex had been good, but it made it almost impossible to climax at all, it took forever and became a chore, and then when it happened, it just wasn't worth all the struggle.  It gave me vag discharge, so while the dryness was no longer an issue, the response was gone and I too felt "dead" down there.

    I complained so much to my Onc, that he prescribed Wellbutrin for me, which surprisingly enough, brought back a lot of sensation and it worked within a few days!  It's the only antidepressant I believe, that is used by doctors specifically to help with libido.  I couldn't stay on it however, because it started giving me heart palpitations that made me feel short of breath all the time. Maybe this is something you might want to ask your doctor about at some point.

    I also tried Zestra, which smelled horrible,  warming lubricants, and clitoral stimulation gels, non of which helped.  Also ArginMax, which I gave up on after only 2 weeks when the jar ran out, but maybe should have given at least 4 weeks as suggested.  Arginmax and Zestra were the only nonestrogenic products I had read about that actually had studies done on them, which had shown a positive effect.   So I was disappointed that these 2 didn't pan out, but I may try the Arginmax again for a longer period if I feel the need.

    I have to say that now that I think I've passed through perimenopause, hot flashes have died down, no period for 7 months, emotions feel very stable most of the time, no more PMS feelings, a lot of my sensation has come back naturally.  I think my body may have gotten used to the new lower hormone levels.  I'm still on tamoxifen.  I have been using some supplements which may have also helped,  fish oil, flaxseed (controversial, I know, but my Onc said it was fine), a multivitamin (I've heard that the B vits. can help somewhat because they are good for the nerves, thereby helping with sensation).  I also try to eat a lot of foods that are supposed to help boost the sex drive.  

    I don't know what Arimidex will do to you, could give you dryness, that seems to be one of the most common complaints from women on these boards.  Maybe it won't be as bad as the tamoxifen was for you, everybody is different in how they react to things. Since it works by preventing the aromatase enzyme from converting testosterone into estrogen, a question I had wondered about was whether the extra testosterone floating around could help with the sensation and libido.   I posted this on the arimidex board, but only got a couple of responses to the negative, so no conclusive answers yet, but something for you to think about.

  • robyn33
    robyn33 Member Posts: 99
    edited October 2009

    I'm just here to empathize with all of you.  I've been on Tamoxifen for 10 months, and I am, like many of you, having problems with loss of sensation.  It's so frustrating, and I agree with you, Orchid, that this problem has been the most difficult thing to deal with in the breast cancer journey. 

    Ruth (rgiuff), when you said that your onc prescribed Wellbutrin, what dosage was prescribed for your symptons?  I would imagine that the dosage was less than if trying to address other symptoms???

  • rgiuff
    rgiuff Member Posts: 1,094
    edited October 2009

    Robyn, I was prescribed 150mg, but told that after awhile, it could be upped to 300mg.  I believe many people do end up at this dose when using it for depression.  I never made it past the 150mg however, due to the side effects.

    I'm not so sure whether it was the tamoxifen that caused loss of sensation for me, or going through the changes of menopause, because I was already having those problems before my BC diagnosis, and now it's gotten better, even though I'm still on tamoxifen, so maybe it's the hormones now being at a stable level and my body finally getting used to the tamoxifen?

    Women who go through chemo or oophorectomy do get these problems too, because they are thrown into menopause so suddenly, and their bodies may take a while to adjust to the change, and then adding on meds that manipulate the hormones further probably doesn't help either.

  • tater
    tater Member Posts: 2
    edited November 2009

    OMG Mazy, you described it perfectly!

    This is my first post. I was diagnosed Stage 3A breast cancer December 2004. Had lumpectomy, lymph node dissection and removal, chemo and radiation. Went from zero to full menopause in 3 months. Took Arimidex and had almost 5 good years other than a great sex life laid waste by the sensitivity you described so well. All the lubricants didn't work; I even risked using estrogen cream briefly and that didn't work either. In August at my checkup (the first one where I'd had no bloodwork in a year) my cancer marker that had always been normal (35) was 300. CT scan and bone scan revealed a left hip nearing fracture, spots on my spine, right hip and lower skull. So, after a total hip replacement and the bloodwork continuing to escalate I've been upgraded from hormone therapy to chemo. 

    My first response was no big deal, my onco said it was very treatable. Then the hormone therapy didn't work. Then I was scared. My anger was coming out in trying to control everyone and everything around me. Finally I had a good cry and realized the real problem was feeling I had done something wrong and had failed. I'm doing a lot of visualization work and realizing the importance of expressing my creativity daily and saying yes, yes, yes to life.  Right now between hip pain and fatigue the sex thang is on the back burner.

    Damn! is right... I truly thought cancer was a chapter of my life that was over and done. Guess I'll still got lessons to learn from it.  I will be a part of this forum and look forward to hearing everyone's experience, strength and hope.

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