Tomorrow I take my last Tamoxifen......

louishenry

I used to be on these boards quite a bit a couple of years ago. After awhile, I decided to move on. I wasn't as knowledgeable as Beesie (she should be a Doc!!) and I found the more I checked in, the harder it was to move on.



So much has happened with DCIS since I was dx 5 years ago. Oncotype for DCIS? Terrific!! I had pretty progressive Docs at Northwestern Hospital in Chicago. They did follow the Van Nuys index in regards to rads treatment. I was really anxious over the fact that nobody recommended rads. My DCIS was very small, removed with biopsy, and lower grade. However, tamoxifen was up to me and I decided to try.

I m a cancer phobe ( I'm getting better with therapy ) so I wanted to do all that I could.



The tamoxifen was fine other than the fact that it made my already giant fibroids grow and I started getting ovarian cysts that needed to be monitored every 3 months. I had 4 ovarian biopsies. All normal. My choices were get off the tamoxifen or get a full hysterectomy.



Most people would have gotten off tamoxifen especially with my pathology. But not a cancer phobe !!

I had the surgery 4 years ago. I was 46.

Crazy, right? Maybe. But it was a choice I made and couldn't look back.



Not sure what I'm trying to say. I guess it's that with time things do get better. I still get an annual MRI and rotate it with my mammo. My radiologist said my MRI can go to every 2 years. My onc said he doesn't need to see me anymore. I feel a little vulnerable but I do think the advice is good.

I asked about going on an AI but my onc said NO WAY!!



5 years last May. It was so hard for a long while. My 4 miillimeters of DCIS changed my life. But I let it. I wanted to do all that I could and I didn't have the confidence to get off tamoxifen. Now that I'm finished, I'm glad that I stayed on it. Other than my hysterectomy, it really wasn't a problem. It is a good drug.



I wish all of you peace with your decisions. I hope for many years of clean scans!! I am grateful for Beesie!! What a gift she has been to all of us!

God bless us all,

Nada

Beesie

Wow, Nada, I can't believe it's been more than 5 years.  How wonderful that you are doing well.  

Thank you so much for coming back and posting. Your post will do a lot to reassure many of the women here. It's so great to hear from you! 

CLC

Nada-

Thank you for posting.  It is very reassuring to read your post.

It raised a question for me, though.  You said that you still get an annual MRI.  I am curious about that, as I was told that once I had the cancer dx, I no longer qualified for insurance coverage of the MRI (though it was covered after the adh diagnosis and is how my dcis was ultimately picked up).  My bs agrees that it makes no sense and my mo said he'd give it a shot, but not to expect anything.

I am curious...has insurance covered your MRIs?  Do you live in the U.S.?  Did you have any issues with getting the MRI?  I would very much appreciate any advice or input!

Thanks,

Claire

louishenry

Hi Claire,



I live outside of Chicago and yes my MRI is covered about 80%. Your scenario is unusual. I would think that an MRI would be recommended especially after a DX. My sister has LCIS and gets one every year as well.

Your BS should make it happen. I can't imagine you not getting one but I guess it's up to the Ins co. My co is Cigna. I used to have Humana and they actually covered it 100%. My Bs and the Rad doc that does my mammos both thought that 5 years would be ok. I would call your ins co directly as well as getting a rec from your rad doc. He/ she can call on your behalf as well.

Good Luck!

CLC

Thanks, Nada!

I will pursue it more vigorously!

Take good care, and be well!

Claire

louishenry

You too Claire!! Looks like your pathology was very favorable. You will be ok. Stay on top of physical exams and tests.

Initially, I thought I would change my diet etc, stop drinking, get rid of toxins etc.

That never happened! However, I figured that I was a pretty healthy person in the first place. I always have been active and not over weight. I do love my wine, but try not to drink every day.

Having a hysterectomy and being on tamoxifen is enough !!!

Who knows why we get cancer.. I do know though that I was an estrogen making machine.

Very early periods, fibroids, etc. I was 10 years old!! Awful. I was so happy when my daughter was 13!

Most of us have done the right stuff and still....

Pm me anytime!

Nada

CLC

Yup...no point in worrying about why it happened.   Only in how to move forward...:) 

Beesie

CLC, my situation is different because I'm in Canada.  But we have guidelines here for MRIs that are probably not dissimilar to the guidelines that your insurance company has.  I had a single MX and I get annual MRIs, alternating on a 6 month basis with my mammos.  After my MX, my first MRI got approved because the radiologist doing my mammo recommended it.  She noted that I am high risk both because I've already been diagnosed one time and because I have extremely dense breasts.  With every MRI and mammo, the radiologist writing my report always includes at the end of the report the recommended follow-up and it always says that I should have an MRI either in 6 months (if it's the mammo report) or a year (if it's the MRI report). As long as the radiologist writes that, I have no problem getting my MRIs approved and scheduled.

That might be an approach that works for you, if the radiologist reading your mammo thinks that an MRI would be beneficial. 

CLC

Thanks, Beesie.  That is good advice.  If my MO and I don't make headway this October, I will ask the radiologist doing my mammo next spring for his input.  I like my mammo radiologist a lot. 

Thank you!

tiff2008

Nada,

I was noticing your post about ovarian cysts etc...my 5 year bc anniversay is Feb 2013, I stopped Tamox early (8 months ago) due to the uterin thickening and a couple D&C's.  This past month I had my reg vag ultasound and they found  a couple ovarian cysts, gyno wanted to repeat ultrasound in 3 weeks.  Repeated that today, the ovarian cysts was smaller ( I had a period between the 2 ultrasounds), gyno was happy cyst was smaller but wants me to think about some options...come back again in 3 months, Hystrectomy or a CA125 test, which we all know has many false positives.  So I have to make a decision what to do??  I made an appt with my onocologist to discuss, get her thoughts as well.  I'm scared to have a hysterectomy.  The way I had read your earlier post, you had a hysterectomy, right?  What was that like?  Are you having major hot flashes or weight gain or?? 

Thank you for listening..

Tiff

louishenry

Hello Tiff,

I did have a laparoscopic hysterectomy four years ago. Most of the women in my tribe have had them due to genetic fibroids. Mine were very large to begin with and likely needed to come out regardless. However, as I mentioned, being on tamoxifen caused them to grow very quickly and new ovarian cysts started to form virtually every other month. My choices were to get off the tamoxifen and see if everything shrinks back to where they were, or to have the surgery.

Since you are off the meds, why can't you wait and see if the lining goes back to normal. It sees to me that it should. There doesn't appear to me a reason for you to have the surgery.

The cysts are probably normal and will shrink down agin.



I wouldn't do it. You are already off tamoxifen and I'm not sure why you are having a ca125 anyway. Cysts are known to grow on the drug and should be fine in a couple of months when u go back.

My hot flashes are pretty bad in the summer mostly and I sleep with a fan blowing on me.

I have put on about 7 pounds over 4 years. I'm assuming that is due to menopause. My weight as generally been stable throughout my life other than being pregnant twice.

I'm also 50 now which probably doesn't help.

The good news is that while I HATE being heavier, I am still considered on the thinner side.

I really need to work harder at it.....

The surgery I had was easy recovery but since u already are off the pills , I would wait a bit longer to see what happens. The likelihood of ovarian cancer or uterine cancer is extremely low .

Good luck,

N

kelly5-11

Hi.  Im wondering if you can answer a tamoxifen question for me.  I have been on Tamoxifen for a little over a year.  I dropped my perscription of yesterday for a refill, went to pick it up today and they told me they were out and wouldnt get any in until Tuesday.  I am angry that they didnt call to tell me this or arent checking with other pharmacies in the area.  Anyway, my question is, how bad is it if I dont take it for 4 days?     I appreciate your input AND CONGRATULAIONS on taking your LAST tamoxifen!    

proudtospin

can you go to a dif drug store?  mine is at times out of the med but always gives me a few pills to cover me until the full script is in

you might want to look around for a new ....drug store?

likely isn't too bad to be off the med for a couple of days but think it basic bad management by the store

louishenry

Kelly,

I wouldn't worry about 5 days. I wouldn't do that often though. I would get a new pharmacy.

Moderators

louishenry, thank you for the update, and congratulations on your anniversary!

kelly5-11

Thank You!  They have, in the past given me enough to get by, but never have they told me Id have to wait 5 days!!!!!   I am going down this morning to ask again if they can call around to another Rite Aid. 

I appreciate your responses.

Best Wishes to you both.

Kelly

bluepearl

Tamoxifen stays in adequate blood concentrations for weeks. Louishenry: I can relate to your anxiety and would have done what you did and more....have a mastectomy.....so I am even worse! You had lumpectomy? That tamoxifen will benefit you for years down the road depite stopping it at 5 years. I would re-evaluate the alcohol situation though. One drink a day is acceptable but because alcohol increases estrogen effects, recurrance for b.c. can be quite high...up to 90%!!!!!

tiff2008

Thank you Nada for your reply...that does help me while I process all of this. I think generally gyno's typically tend to be be very aggressive especially when they are dealing with a bc survivor.

Thanks again

Tiff