Changing to AI/OS from Tamoxifen after reviewing SOFT study?

I see so many of you are opting for this new treatment option. And some with seemingly low risk factors for recurrence. When I first met with my MO to discuss it she was pretty convinced I should do it. But the more questions I asked and the more time that passed and their team continued to review the study results - the more the guidance I received turned to not having me do it. So just a word of caution to not jump. this is complicated research and I think some practices are jumping on it without having fully digested the research. I'm being treated at mskcc - one of the top cancer centers in the country, was 37 at diagnosis, had 6 positive nodes and am BRCA negative. And with 2 successful years of tamoxifen under my belt and a regular menstrual cycle - all my docs are telling me I'm better off just sticking with my current treatment and keeping oopharectomy as an option on the back burner god forbid I encounter recurrence in the future. They say with the success I'm having so far they don't want to subject my body to menopause effects so early. So just a word of caution to ask questions and be thoughtful.

im glad to read the last 2 comments from you ladies. I gave the AIs a month and im done. SE are horrible. Back to tam i go!

I've been on Tamoxifen since August, and decided to make the switch and see how it goes. I was 37 at the time of my diagnosis, just turned 39, and like Aeon, had very high ER/PR (100%). I've had a couple of periods since finishing chemo last April, but haven't had one for more than six months now. Not sure if that equates to chemopause, menopause, or tamoxi-pause (is that a thing?).

Advice from my MO/NP was to give it 4 months and see how well I tolerate OS + AI. If the side effects are unbearable, I can go back to tamoxifen. I'm not a big fan of the Lupron injections though, and am not thrilled about the prospect of getting 59 more of them! Assuming the first four months goes well, I will probably opt for an oophorectomy.

My first Lupron shot was yesterday and I'll start Arimidex in two weeks. For those who have started Lupron, I'm curious about the onset and timing of the various side effects. When should I expect the hot flashes to start? I feel a bit crampy today (day 2 after shot). Is that normal? Anything I should know about Arimidex SEs as compared to tamoxifen?

I just got my second Zoladex shot on Wednesday. I also started Arimidex twelve days ago. The only changes I've noticed are a decrease in appetite and being a little more tired. I do exercise seven days a week so it's possible the tiredness is due to that. And I'm certainly not going to complain about the loss of appetite. I've finally lost 11 of the 18 lbs I gained during treatment last summer

I cannot imagine having to deal with this crap before the age of 50, honestly. I feel for all of you. I just want to put in the following words from someone older (50 at diagnosis, and feeling "too young to die!" ) to put some of these side effects into context. What I want to say is that some (perhaps many?) of the side effects of lupron/AI are what menopause is like. I was experiencing all of these things: occasional hot flashes, random aches and pains, stiffness after sitting a long time, general and sometimes overwhelming fatigue, memory problems, constipation, minor hair loss, changes in vision, inexplicable weight gain like my body just decided to change its shape.... ALL of this was going on BEFORE I ever was diagnosed with cancer. So, I think that in some ways, what you are being asked to do is trade 10 years of your youth for a certain number of additional years of life as an older person. Does that make sense? I think that's a very hard decision. But you might want to also consider that developing cancer at a young age is itself a sign of heightened risk.

My MO told me that I would be on these drugs for 5 to 10 years but I should never expect to go back to how I felt/who I was before I started taking them because no matter what I'd be 5 to 10 years older and these are sort of major years in terms of starting to feel the effects of age. I hope this is not a depressing post! I have found life on OS+AI to be much better than life on tamoxifen was for me. No question. Everyone has to weight the effectiveness and side effects for herself...

Professor50, great post! I had never looked at the Tamo SEs and compared them to perimenopause or full on menopause SEs. My MO told me I will be on these drugs for 10 years and also stated, as your MO did, " I should never expect to go back to how I felt/who I was before I started taking them". For me at least the post was not depressing but provided more information. I for one will be on the hormonal therapy as long as my body is able to tolerate them and hoping 10 years -- especially being S3A with lots of lymph node involvement. It is not an option for me.

Again thanks for the post. My MO will continue to track me to see if I go into full blown menopause during the next 10 yrs to determine if I switch to AI. She still believes that Tamoxifen is the best drug for me at this time.

Again, thanks for the post.

ladyb1234: You go woman! I hope you feel proud and strong every time you take a tamoxifen pill: You are doing everything you can to stay healthy! How cool is it that we have these medications (whether its tamoxifen or an AI) that combat the exact thing that our cancers fed on!? Keep it up ladies!

Shelleym1: It sounds like they are threatening you and that is not right. I am so sorry. It is certainly up to you do what you want to do. And if that means just tamoxifen you can do that. This is your life.

At the same time, I can at least tell you from my own experience that tamoxifen is not hugely different from doing an OS+AI, in terms my experience. All of these drugs are about minimizing the estrogen that feeds cancer. You can try to the lupron shot and if you do not tolerate it well, demand to go to just tamoxifen. That is all within your power.

I hope that your experience of the shot is like mine. I had never had anything like this before either, but it was not a big deal. I didn't feel any different at all. I had a few hot flashes but otherwise, I have felt pretty good. I'll keep my fingers crossed for you.

This is all a lot to handle and you've already done a ton to save your own life: Surgery and radiation. This next step is all about making the most of those decisions by preventing a recurrence. But you shouldn't be emotionally blackmailed into doing something you cannot handle. No matter what happens, these choices are yours and you have the power!

shellym - I am admittedly no doctor so take what I say with a grain of salt. But looking at your stats, and based on the research I've read about the ovarian suppression trials - I don't think choosing OS+AI is so strongly called for in your case. Your oncotype was low enough that they didn't have you do chemo. The prime target group for this study was age 35 and younger, with chemo treatment. Yes - young can equal high risk whether there is nodal involvement or not. But tamoxifen has helped women reduce recurrence for years. If you haven't ready any of the research yet, Living Beyond Breast Cancer has some easy to digest material: http://www.livingbeyondbreastcancer.net/LBBC-Libra...

Check out the

Digging into the Data: Understanding the Benefits of Ovarian Suppression for Young Women

Bottom line is its your body and your decision. You need to make the decision that feels right for you and your body. You're young. You still have a lot of years left that you want to be of good quality. Don't let your dr's bully you if it doesn't feel right to you. The truth is - they don't have a crystal ball and so don't really know either. Good luck and chin up! Whatever decision you make in the end will be the best decision you were able to make at the time you were forced to make it.

Shelly.....you sound like me 2 years ago ......

 I agree with ramols ...but I may have another option for you that you may want to consider ........( I am also no DR . so I take what i say with a grain of salt as well ..).

I was in a similar situation as you 2 years ago ......was put on Zoladex for 2 years with the intention ( my docors intention ) to swtitch me to AL's after the 2 years.

I stopped the O/S after 18 months as the SOFT trial confirmed that there was no benefit for my age group  regarding  O/S + TAmox vs Tamox. alone .  I am 48 now but your age group did show a benefit to the addition of O/S...

So here is a possible solution .......do the shots for 2 years and decide after that ............the 2 years of O/S gave women in the zebra trial the same added benefit of CFM ( chemo ) treatment ..I will try to attach the link to the zebra trial ..if it doesn't work you can PM me .

( I n this trail the women that got their periods back after the 2 years had no increased risk either ) .....this is an older trial but my MO has refered to it on several occasions .

I am NOT doing AL's since things are going very well on tamox alone and my MO is okay with that . 

I feel like I did something extra to improve my odds by doing the O/S .   ..and my side affects very manageable 

Huggzzzz to you

 ZEBRA trial article .    http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=4&L3=5&L4=0&PID=&sid=130&cid=421

Not sure if the link will work but the title of the article  is no. 6 Two New Studies May Change Treatment Options For Premenopausal Women you can maybe type ZEBRA into the search field.( its a great article by Susan Love ).........

Ramols. Thank you for posting that Podcast. I have a question for you ladies who have listened to it. Is there a european study that showed virtually identical outcomes for T+OS and AI+OS? Is the benefit to switching to an AI after OS greater in the <35 set?

I don't know if anyone else saw this study http://www.ncbi.nlm.nih.gov/pubmed/25532426

So they basically compared women with BRCA who had oophorectomies to regular population as far as fractures:

CONCLUSION:

Five years after RRSO, BMD and fracture incidence were not different than expected from the general population. Based on these data it appears safe not to intensively screen for osteoporosis within five years after RRSO, although prospective research on the long-term effects of RRSO on bone is warranted.

And the bone mineral density did not differ all that much from general population: Median age at RRSO was 42years (range 35-65) and duration of follow-up 5years (2-8). Standardised lumbar spine (Z=0.01, p=0.870) and femoral neck BMD (Z=0.15, p=0.019) were not lower than population BMD. Higher age at time of RRSO and use of hormonal replacement therapy were associated with higher, and current smoking with lower standardised BMD-scores.

They only followed women for 5 years though. But this may be in line with the study that showed that bone loss is heredetary, if your mom had fractures or osteoporosis you would be likely to get it too. So some of us will have bone issues regardless of ovarian supression/oophorectomy.

Shellym1 ...what stories would you be referring to ?

There are also good stories out there ! ...we just don't hear about them as much !

Just found the lupronvictimshub.com site ...thanks Shelly...I understand your concerns now .

Wish I could help you ..... Hope you can get a second opinion or talk to someone that can help you figure this out .

I am wondering if Zoladex has the same concerns and lawsuits as Lupron ??

Nan I have to say it is refreshing to hear your onc say she didn't want to yank out your ovaries! Seems like that is a regular recommendation these days!