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What should I do?

Hello Ladies,
Had my 6 month visit with the Onc this week, it went Okish. She asked whether I had any side effects on Tamoxifen and I mentionned the very heavy periods that I'm having. She went to ask a colleague whether I would be a suitable candidate to try Zoldex and they said no. She then went on to say that "I have good news for you, my colleague says you can finish tamoxifen". Of course, I was very shocked only having had tamoxifen for over a year and given that my tumour was very ER+. I got home and rang my breast nurse who was a bit shocked too so she spoke to the Onc on my behalf to question why no zoladex/tamoxifen? Usually zoladex only given to node positive people apparently and also the tamoxifen would only give me 0.3% benefit - could tamoxifen really only give me such a small benefit? Well, in the end he has given me 3 options: no further treatment, stay on tamoxifen and then after pressure from my nurse has said that I could try zoladex for 2 years. So, what would you guys do? Obviously, zoladex will give me a whole new load of side effects? Is zoladex more effective than tamoxifen in preventing recurrence?
Also, I mentionned a little lower back pain that I had been having which is worse at the end of the day, probably (hoping that it is) due to picking up my little boys, (has been better the past couple of days) but they have referred me for a bone scan- so am agitated about that. Not having had a bone scan before, where do they inject you prior to the scan? Am stll very needle phobic!!
My Onc says there is no data to show which is more effective. Any advice would be greatly appreciated.
Thanks Emma

Re: What should I do?

what about raloxifene? there must be other estrogen inhibitors.
mabye get a second opinion?
good luck
health and happiness
sarah

Re: What should I do?

Hi Emma,

I can see why you're puzzled about all this (I am too).

I'm no expert. But first of all, it seems to me that there could be a totally non-cancer, non-Tamoxifen reason for heavy periods and that a first stop would be a consult with a GYN. Lots of women have heavy bleeding from, for one example -- fibroids. The older we get (until menopause), the more troublesome fibroids can become. And there are other non-Tamoxifen possibilities.

Then if/when the usual causes are ruled out, you could proceed to figure out the best way to go forward in terms of balancing side effects and endocrine treatment for your breast cancer.

The stats that were quoted to you must be based on what they think is your existing risk of recurrence (very low), and then they are telling you the difference endocrine tx could make to that risk. Each treatment offers the same degree (percent) of relative risk reduction to every person (at least, as far as we are able to break it down at this point). But that risk reduction gets factored into each individual's existing risk, which is taken from the diagnostic details. Of course, these are very rough estimates and cannot guarantee anything for any one individual, but they do give some help when making treatment decisions.

So let's just use round numbers, not necessarily the correct ones (I'm no mathematician). If Sally's risk of recurrence, based on the details of her stage I cancer diagnosis, is 5%, and Tamoxifen offers her a 50% reduction in her risk of recurrence -- then in the end, it is reducing her risk by 2.5% (50% of 5). Which changes her absolute risk of recurrence from 5% to 2.5%.

Then there's Cindy, with a stage 3 diagnosis, and a 60% risk of recurrence (again, just pulling nice round numbers out of my hat -- these are not real people). Tamoxifen offers her the exact same percent of relative risk reduction that it offered Sally -- 50%. But 50% of that initial 60% risk is a 30% risk reduction for Cindy, just from Tamoxifen (her absolute risk would go from 60% to 30% (60 minus 30=30) -- quite a different number.

But again, it seems to me that a basic GYN workup would be the first place to start, before making such drastic treatment decisions.

Keep us posted, and good luck,
Debbie Laxague

Re: What should I do?

Hi Emma I agree with Debbie to a great extent and think you need to find out if these heavy periods are being caused by tamox (possible) or something else. I know women who were dx DCIS and her2- and still taking some form of hormone therapy so I'm puzzled on this decision. I chose to have an ooph rather than monthly shots to shut down by ovaries and its worked well for me and I'm now going into my sixth year on arimidex.

As to the bone scan I had the shot in my arm and was then told to come back three hours later, I was far from home but close to a large shopping mall which took my mind off the whole thing!!
I think I had to lie very still for 25 minutes while the scanner went up and down my body, it comes very close but does'nt touch you and I found keeping my eye's closed was best as I'm claustrophobic!
Good luck with the scan and please keep us posted!

Re: What should I do?

Thanks for your responses ladies. They are guessing that the issue with my periods is tamoxifen related as I saw a gynae in the summer and had a hysteroscopy done which showed everything to be normal. Tricia, so they let you stay on hormone therapy longer than the 5 years- did you have to beg for that or is that standard in Ireland?! Still unsure how to proceed with treatment but in my heart I know that I need to be on something. x

Re: What should I do?

Hi Emma,

I had Zoladex for almost 5 years, which shut down my ovaries. After the first shot I had a really bad period, which lasted for 10 days or so, and then nothing for 5,5 years. It was lovely to go around doing things without worrying about tampons, leaking, etc. I had some hot flashes, but regular excercise kept them in check.

I am somewhat surprised that your tiny tumor called for such an aggressive approach. Did you have an Oncotype test to determine your risk of recurrence? Perhaps they hit it with the big guns because you are still quite young?

Anyway, I just wanted to share that for me Zoladex was doable and after I finished the 5 years, my periods came back. I am still NED, even though I never had either Chemo or Herceptin. Ofcourse, there are no guarantees, but I am glad I didn't have to have chemo. Hopefully the Zoladex combined with Arimidex did the trick. By the way, that might be another option for you: you could replace Tamoxifen with an Aromatase Inhibitor if you are on Zoladex.

Perhaps a second opinion can help you make up your mind?

Jacqueline
From the Netherlands

Re: What should I do?

Sorry can't remember my log in.

I'm having trouble deciding about hormone therapy as well, this is what my Onc as I discussed a couple of weeks ago. Dx at40 was stage 3a, multifocal with 2 pos nodes, skin involvement, triple pos.
When I finished Chemo I started Arimidex as I was in chemopause, stopped Arimidex after 1 yr due to osteoporois, onc was happy for me not to take any hormone therapy as I was still in menapuse, said Tamox would only reduce my recurrence risk by 2% - so I decided not to take it.
My period returned 6 months ago, has been irregular and lasts a couple of weeks with lots of spotting in between, haven't been on any hormone therapy, bloods now show I'm pre menopausal again, saw onc a couple of weeks ago.
He thought Zoladex might be a good choice to lower estrogen and also fix the bleeding issues.
He said the trials for zoladex were only for 2 yrs and I'm coming up to 3 yrs post surgery in Feb and had 2 yrs of chemo induced menopause was beneficial as far as reducing my recurrence risk, so we don't know if would be of benefit or not, he said a lot of Oncs choice to give it for 5 yrs though.
So the options are;
Tamoxifen - clinical trails indicate it's not as effective for Her2 BC, would only give me small percentage of benefit, can take if I want to feel as if I'm doing something but of no great benefit.
Zoladex for a yr or more, unfortunately my BMD is still bad despite Zomtea infusions, so maybe not a good option for my bones
Or do nothing, which he would be comfortable with as it the first 2 - 3 yrs after dx is the most crucial as fare as recurrence risk.
Will talk to him further in the week to make a decision.
Hope this helps