MY ONC'S PHILOSOPHY AND SEXUAL HEALTH

Anonymous

I saw my oncologist today to discuss the problems I mentioned in the  thread about "Chemo Vagina Help"    Due to vaginal atrophy and the problems that go with it, I called  onc's  office to ask him to prescribe Vagifem.  I needed the reassurance from him even though my Gyno feels I can take it without worrying it becoming systemic and that it is beneficial for topical use only.  My onc says "absolutely not" he will not prescribe it and he debates this issue with many gynos.  BUT , he believes quality of life and not having pain and bleeding during sex is a huge issue and he totally is understanding of this.  SO......He thinks I should switch from Arimidex to Tamoxifen, although in his opinion Arimidex is better for me in keeping the cancer away. He said the vaginal problems will subside on the Tomoxifen.  He's dealt with this issue before with many of his patients and he feels he wants me to stay clear of the Vagifem  His onc nurse explained to me when he left the room, that this is "his philosphy" and there are many differing "phylosophies" about this among oncs.  So, my next step is an appointment with my Gyno on Friday and another discussion.  In the meantime, I have been feeling much more comfortable on the Vagifem which I had renewed this week, and now I'm totally discouraged because I am afraid to switch to the Tomoxifen, and SE's .  I really feel so comfortable with my onco, and trust him completely. 

CAN ANYONE GIVE ME SOME THOUGHTS ON THIS?

Barb

susand

Hi Barb, I do have to say that I was on Tamoxifen for my first year after chemo and I had no vaginal atrophy at all..even after my ooph.  As soon as I switched to Arimidex the symptoms of atrophy started.  I guess you have to outweigh what is best for you.  I had less SE's on Tamox and sometimes think of asking my oncologist if I can switch back... but I did worry about blod clots and secondary cancers from it.  This whole jouney is so frusterating.  It feels like a crap shoot and that no doctors agree on things!!  PS..things are getting better in the bedroom for me so I am keeping my fingers crossed

sespebadger

Hi Barb,

Just wanted to say that I've been on Tamox for two weeks and so far haven't had any side effects that I didn't already have.You and I also have similar diagnoses. I was 49 and pre-menopausal when this all started.

I stopped having my period after a month of AC chemo and then got hot flashes at night after that. I think they have gotten slightly better over the last 8 months or so, or maybe I am just used to them, but they are not terribly debilitating. Also, I talked to my onc about the importance of sexual activity and that I was concerned about Tamox, and she said it actually causes a bit of vaginal discharge and that can actually be helpful.

I've been getting over radiation and some family issues (when it rains it pours), so can't really tell you YET how the sex life is :-) but I am HOPEFUL. I am also applying a lubricant fairly regularly just to keep things as prepped as possible with hopes that I can once again enjoy that part of life soon. Good luck!!  

Medigal

Can anyone help me understand what vaginal atrophy actually does to one's internal organs?  I am on Arimidex for over 6 years and due to see my Onc this week.  I am, of course post menopausal, and have had a hysterectomy and I do not in any way have to be concerned about your "sex" problems thank goodness.  I was one of the fortunate ones to get diagnosed in my 60's so that is not a concern for me. However, if I continue on the Arimidex I am concerned about what atrophy does to my internal organs.  For example, what should I expect to happen other than dryness which I am using Replends for.  Does something worse happen??  I was hoping to get some answers so I can decide if it is prudent for me to continue on the Arimidex.   Other than the Atrophy and mood problems, I have been able to cope with the other side effects.  Thanks for any help and info.

Anonymous

Medigal, like you I am also on Arimidex.  I was diagnosed with BC last year. I was 59 when diagnosed and postmenopausal.  I am still sexually active with my husband of 39 years and our sex life was always very good and so I can tell what the changes of vaginal atrophy feel like. For me, the vaginal tissues feel like they've become very thin  and dry, even with a lot of lube, it is still very painful and it's almost as if the walls of the vagina wont allow my husband in and even with the lube the tissue on the outside entrance still tears and bleed.  The extra sensitivity even cause discomfort during wiping after urination. I hate living like this, but I'm also very fearful of changing from Arimidex to Tomoxofen due to other SE's.  It's not like I'm in my 20's 30's or 40's, but because I'm still "young" in the way I look and feel, libido is still important to me, and I still can experience orgasms with my husband even if sex is not as frequent as it used to be.  I also feel that vaginal atrophy, causes your clitoris to shrink as well and less able to  respond to stimulation and orgasm.

Barb

susand

medigal, I dont think vaginal atrophy does anything to your internal organs.  I think it can cause discomfort, UTI's , or possible infection if there are tears due to the dryness, but moisturizer should protect that.  I have heard of people having a prolaps down there but kegals are supposed to help prevent that.  If you are doing well on Arimidex and want to continue on it for extra protection and you are not concerned with the sexual side effects I dont think its going to do any more damage down there.  

mymountain

I'm going to jump in with my ho.  Are we not supposed to be as sexual in our 50's and 60's as we are in our 30's and 40's?  If you have a loving relationship, the sex is important,  no matter how old you are.  I used to work in long term care and know that folks in their 70's and 80's (and well beyond) are enjoying satisfying sexual experiences.  So don't sell yourself short, no matter your age.

BTW, I've been on tamoxifen for about two years, and it I'm assuming it's the drug that's affecting my libido.  I can say my sex drive dropped at least 50% after starting it.  I've heard of many women having success with the e-string for dryness and atrophy, but so far have been doing ok with lube... not great, but ok

Medigal

Forget the questions on Atrophy....you gals are still having sex in 50's and 60's???  DP and I stopped over almost 20 years ago!!  I had no idea people did it after 50!!  Maybe my vagina is in great shape from NOT being used!  What crap!  Any way, we cope best we can.  Thanks for the additional info ladies.  I just got over being mad at DP and now I am "more" mad at him!  You gals are sure lucky!!

karen1956

Barb....my onc won't let me use any of the cremes, but he is okay with the e-string as it is not systemic....onc also feels that AI's are better than tamox, but he still believes that tamox is a good drug and does not lower the stats that much.  When I was first on AI's and had so much trouble, I tried tamox, but the side effects were awful for me....GI mostly......so back on AI's for 21/2 more years...I stopped taking AI's in March 2010 after 3 1/2 years.....mojo continues to be a concern as it vaginal atrophy...the estring does help, but we still need other lubrication....My onc told me that his job is to keep me cancer free, but he agrees about QOL and that is why he relented and let me stop AI's.  3 1/2 years had to have provided some benefit.  I see my onc again this Thursday for my 3 month check up.....

Moissy

I was on arimidex for 5+ years, and near the end finally started using the Est-ring. I had avoided it, but the atrophy became such that they couldn't do an adequate pelvic exam. It does emit a very small amount of estrogen systemically. My gyne was fine with it -- first oncologist was not....I eventually switched onco's (unrelated to this issue) and new onco said he was very comfortable with the Est-ring. Now that I am off of the arimidex things have improved, and I only use the Estring now infrequently. It helps tremendously....It's a measured risk, but from the prescribing literature I have read, it emits a very small amount of estrogen --  nothing close to what a premenopausal woman would produce. Good luck. Hard decisions.

jorja61952

Hi all,

I had been using a very small (1 gm) amount of Vagifem 2x a week for a few years off and on.  So now I've been diagnosed with a very small amount of DCIS (4mm) through an mri and I have stopped using the cream because it scares me.  I already had one masectomy 11 years ago.  So here's a question:  if I had a masectomy on the other breast now (which I am considering for many reasons), what would be a reason for worrying about absorbing that small amount of estrogen into my bloodstream?  Just wondering if anyone asked that question and has some sort of input.

Anonymous

I saw my GYNO on Friday and disicussed everything with her.  She says she knows that there are onc's with their phyosophies of NO ESTROGEN even in cremes that are applied occasionally topically and don't enter the circulatory system.  She actually wrote me a new prescription of Vagifem for a 10mg twice weekly dose and told me this is entirely my decision and she told me to discuss it with DH and what we might want to do is use it along with Replense or KY liquid beads on a regular basis and once the atrophy is gone and sex is not as uncomfortable, wean off a little and use occasionally .  So now I am deciding on what to do.  Should I change over to the Tomoxifen from Arimidex and continue using the Vagifem occasionally, or just stick it out on the Arimidex and continue on the Vagifem occasionally.  I Really conflicted about all of this .

Barb

Medigal

Will someone please tell me what these KY liquid beads are and if they are available easily?  I am now using the Replens with the reusable tube every 3 days and I hate that stuff!  Are the liquid beads easier to insert and are they as safe as the Replens. I need something without "any" estrogen in it.  I didn't go through all this to mess myself up using something with "any" estrogen at this point.  My Onc says I need to stay away from "ALL" such products and he only recommends Replens.  Most of it pours out of me after I put it in so I have no idea what good it is doing for my private parts.  Thanks for any info on those beads and if you can post the brand name which makes it that will be helpful.  Much appreciation.

Mantra

I too had been using Vagifem when diagnosed. My breast cancer surgeon said no vagifem. But my gyno said using it twice a week on a regular basis, thickens the vaginal wall and once that happens, very very little gets absorbed. He said using it infrequently is much worse because the skin remains thin and more is absorbed.

So I guess the breast cancer surgeon looks at it from one way . . .don't you dare use anything that can cause cancer. A gyno looks at it another way. ..  women need to feel comfortable and pain free and enjoy a normal sexual life if they choose and vagifem gives them the ability to do so.

I look at it this way. My cancer was er and pr negative. I've had a BMX. Yes, there is still breast tissue left. And yes, Vagifem gives a warning that the product is not to be used for women who have be diagnosed with BC. If Replens worked, I would switch to Replens. But in my case it caused such burning that I had to sit in a bathtub to get relief. The burning went on for days and days from just one dose. So I'm using Vagifem because I want to enjoy my life and in my case, having a healthy sex life is important to me. I don't know if it's the wrong thing to do medically given my type of cancer and my choice of treatments, but it is what I am doing and I'm glad that at least part of me feels normal.

jorja61952

Mantra, that is interesting what your gyno said about the vaginal wall thickening and not letting much get absorbed into the bloodstream.  I DID bring it up with my oncologist and we arrived at the conclusion that it is a quality of life issue and a choice I had to make.  THAT is before I graduated to the cream and was still using the tablet.  But the tablet wasn't working.  So I went to the cream, which works pretty well.  But you know, I have been conviently neglecting to mention that I was using the cream.  I either was afraid of getting scolded, or I just didn't want her to say anything that was going to convince me to stop.  I don't want to give up my love life and I want it the way I want it, if you get my drift.  Anyway, I stopped using it for now, but I haven't had sex since.  And I'm sort of afraid to--I'll probably start crying or something because it hurts and that would be so sad. 

jorja61952

@Medigal.  The LiquiBeads are fairly easy to get.  I saw them just the other day in the grocery store in the feminine products section.  They are in a light blue box.  They are gel capsules I believe and they disperse gradually.  One of them is supposed to keep you moisturized for 4 days.

kmartin

I am using the Vagifem with good results. I really do have to use it twice a week, I tried to cut back to once weekly and it was not effective.

Both my onc. and gyn agreed with this use. I am TN. Without the Vagifem I could not participate in any sexual activity without bleeding and serious pain.

Medigal

Thanks Jorja, I'll check for them next time I am in a store.  Sounds better than sticking that plastic tube up in me and have it all pour "out" again!  If one lasts 4 days, that already is one day longer than the Replens.  I may see what my Onc thinks about it to make sure there is nothing in it I can't be using. 

Anonymous

I've never used the KY liquid beads, only the Replense.  My Gyno recommended them.

Barb

karen1956

onc wrote me an Rx for testosterone 5mg tab...he said to try it for a month...if it worked stay on it, if not stop it.....he said estrogen cremes are okay as long as they are not used more than twice/week....but he didn't give me an Rx for one...he has a hand out with over the counter recommendations for vaginal dryness and one of them includes yogurt!!!  I have the e-string which helps some....but the lack of libido has been a major issue.  When I was googling testosterone, it says it also helps with "flatness" of mood...boy would I be thrilled if that was also a benefit....I've been complaining to my psychiatrist about "flatness" and she has had no suggestions...when I read that testosterone might help I was really annoyed with her...Well, I praying that the testosterone works for both libido and flatness of mood....that will make such a difference in my QOL....

DesignerMom

Shanagirl-  I'm just popping in here because I am a bit puzzled.  I just finished chemo and am almost finished with rads.  I am perimenopausal (2 periods in year).  My Onc wants me on Tamoxifen for 2 years.  Then she would switch me to Arimidex.  As I have some history of blood clotting, she offered to remove my ovaries instead of doing Tamox, not going to do that.  My question is, do they give Tamoxifen to postmenopausal women?  I thought that was not done.  I will have to make the hormone decision soon.  Thanks to everyone for their tips on vaginal atrophy, chemo sure has changed things.

Anonymous

DesignerMom ~  I too was wondering the same thing and have asked the question on the hormonal board.

Bab

Firni

Hi designermom.  I'm postmenopausal and I'm taking Tamoxifen.  It started out as a financial thing. The Arimidex has a huge copay with my insurance.  Onc said Tamox. wouldn't be as good for me but still beneficial.  I also don't like the idea of eradicating all of my remaining estrogen.  I just want it blocked from any little tumors that might want to form.  Also, onc was fine with a vaginal cream estrogen for atrophy because I was taking Tamox.  He said that any estrogen that might get into my bloodstream would be blocked by the Tamox.  Not so with an AI.  I only have some hot flashes and some joint discomfort from the Tamox.  Vag. atrophy, low libido etc, is a product of age and chemo I guess.  Tamox does produce some discharge, but certainly not enough to have comfortable sex.  I do use the vaginal estrogen 2x a week to keep limber, so to speak.

karen1956

tamox is for both pre- and post menopausal women....AI's just for post menopausal

hrf

Both my onc and my gyn said it's ok to use Vagifem. The vaginal atrophy was painful!!! My gyn said to use the Vagifem 3 times a week because (as said by someone else as well) it builds up the vaginal wall and prevents estrogen from seeping out. By using only 2 times a week, might not get as much thickening. I find it makes a huge difference. It's a QoL issue. .....and gyn said not to use the Replens .. it causes burning and could damage sensitive tissue.

Anonymous

karen1956  I also heard that Tomox can be for both pre and post meno women, and AI's only for post.

hrf ` Today is another day and I'm wondering if I should just hold off on the Tomox and stay with the Arimidex and just use the Vagifem.  Just try to deal with the bone and joint pain being really bad on some days.  I'm still conflicted about starting the Tomox especially 2 daays before Thanksgiving.

Barb

Claire_in_Seattle

Good Morning Barb!

You also just posted on the exercise thread.  Why don't you try an exercise program and see if it helps with all these symptoms.  I also think it has the added benefit of keeping me in the mood for action.  Because it's also about feeling good and confident about your body.

Endorphins are amazing things.  They block pain and make you feel wonderful.  I couldn't believe how terrific I felt on Sunday after my slightly snowy ride and it was LEGAL!!!

Anyway, good luck and feel better.  Happy Thanksgiving!!! - Claire

Mantra

Now here's an interesting link regarding this topic. It's a link to the largest settlement in Illinois in 2005. Click on the link and do a search for the word "breast". Up comes a 6 million dollar settlement against a gyno who prescribed estrogen to a high risk woman. They are probably referring to HRT and not Vagifem but perhaps it's cases like these that cause a lot of gynos to flat out say "no estrogen" to protect themselves against lawsuits. http://www.lakinlaw.com/CM/Custom/Crain's%20List%20-%20Largest%20Verdicts.pdf

Ina

Regarding the estring not being systemic--I simply don't believe that, even though all the GYNs say it is not. I love my GYN but I have told her I won't use any estrogen. I used the estring for years for vaginal dryness, and loved it.  But after the cancer I would never use it again. I get migraine headaches with an aura.  They have always been related to estrogen--when my estring was due for replacement, I would get the aura, and I knew it was time to change it.  The mucus membranes are a great way to deliver anything to the blood system--quickly. 

I am 58, so Barb, I can really relate. I want to have great sex with my husband forever--and I still feel young. Unfortunately, I am taking tamoxifen, and I think it may have affected vag. dryness, but maybe it's just missing my estring.  No other side effects, though... 

Ina 

PS  I like those KY beads too, and they will work in 30." 

Ina

Karen,

Let us know about the testosterone!  I'd love to find something that helps!  My doctor just throws up her hands.

Ina 

Anonymous

Ok gals, I think it's a mind over matter kind of thing. The Estring and Vagifem applied keep the vaginal tissues a little thicker and more supple, the Replense applied at the same time keeps it moist and from dying out.  So last night, I'm on the heating pad in my bedroom, because my joints and lower back were so bad all day, and I had just finished watching Dancing With the Stars.  DH comes in and I asked him to massage my lower back cause I was really in pain.  So you know, DH can never Just give me a message without wanting more And I was feeling all squishy in there from the Vagifem and replense, before you know it we were having good old great hot sex (with the help of my new pocket rocket of course)  And I have to say girls, The "O's" were great last night.  Now I'm still conflicted about my onc's philosophy and when to stop the Arimidex and start the Tomox.

Barb