Mets to bone after 5 years - damn!

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?

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

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

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. 

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.

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.

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

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

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 

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, 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.

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.