Thanks Jolamine,

Gosh, the weight gain with hormone therapy sounds horrendous. Which therapy/therapies were you prescribed? I wonder if they all have the same effect. My oncologist has initially talked about Anastrozole supported by a 6 monthly injection of something based on alandronic acid (I forget the name of the one he mentioned) to combat osteoporosis and also to make the bones less subject to secondary cancer. 

I really don’t like the idea of taking drugs, especially not multiple drugs with one there to counteract the side effects of the other. But I’m kind of putting those thoughts on hold until I’m near that stage when I need to make the decision. I also don’t want to have cancer, so it is a difficult one.

Hi Gadgetgal,

Yes, the weight gain was awful. I had Tamoxifen for a year after my lumpectomy and then Letrozole for 6 years, following my double mastectomy. I stopped taking this in July 2017.

I don't like the idea of taking drugs either, but have ended up with quite a coctail. As you say, we don't want cancer, so it's Hobson's choice, isn't it?

Kind regards,

Jolamine xx

I’m on tamoxifen and mist be one of the lucky one’s as my weight has remained fairly stable since starting on it. Had all the other symptoms, hot flushes, night sweats and generally feeling rubbish but that seems to be calming down now. Having said that, it has taken a year to get to this stage, it can take a while for some. 

Met with the oncologist today to get the results of the Oncotype DX test. I was relieved to be told that, with a score of 13 out of 100, chemotherapy would bring no significant benefit. I'm extremely relieved. I have a treatment plan of three weeks radiotherapy and daily hormone therapy with anastrozole plus 6 monthly injections of zolandronic acid to prevent bone loss. I think the hormone therapy is currently planned for 5 years.

I'm a little worried about the drugs as I have a friend who said that she felt she aged 5 years the moment she started on the hormone therapy, and that she got bone loss. However everybody reacts differently, and she was on different bone-loss inhibitor drugs so maybe that made a difference. Also, she lost weight, rather than put on weight, but that may have been due to the changes she made to her diet. 

Anyway, I feel quite relieved. The difference in my state of mind between my first post in this thread (total panic) and now (informed resignation with a tinge of optimism) is quite noticeable. Thanks to everyone who has helped with calming posts. I don't feel that I'm out of the woods yet, but having recovered well from surgery, with a treatment plan ahead of me and with no more immediate unknowns, I'm feeling as well as I could do. 

I doubt if anybody ever stops wondering, will it come back?  Is it really gone?

Great news! I’m also nervous about the hormone treatment and strangely more worried about the effects of that than the surgery or anything else. It feels like an end to my femininity.

Totally get your feelings about will it come back and are you ever free from that thought. I suspect it’s natural to have that worry; it’s always the elephant in the room.

Cancer has certainly changed my perspective on life. I don’t sweat the small stuff any more. I’m retraining my brain to only worry about the things I can do something about (which is surprisingly few things as it turns out - a real wake up call for a control freak like me - lol!). 

Hi Gadgetgal,

This is fantastic news. We all react differently on the drugs, so there is no point in worrying because your friend had problems with them. Different people will act differently with the same drug, but where you have both had different treatment, no comparison can be made.

I am glad that you are feeling 'informed resignation with a tinge of optimism'. This is a big improvement from the 'state of total panic' that you first presented with. Isn't it amazing how getting rid of the unknowns can change your mindset so much?

I believe that the fear of recurrence or spread is something that we all have to live with

I hope that your radiotherapy goes well.

Kind regards xx

I just opened an old iPad I’d not used for months and found and reread this thread. It is fascinating to track my journey as I wasn’t very good at keeping much of a diary. My 3 weeks radiotherapy  in November 2018 went very well with minimum discomfort. Went back to work the Monday after they finished which was probably a bit too ambitious as on the Tuesday I went down with a horrible cold that kept me off work for a week. I didn’t feel I could ask for more sick notes when I wasn’t actually having treatment,  it maybe that would have been wise.

I began Tamoxifen in December with some worry but amazingly I seem to have no side effects whatsoever. I’ve re joined slimming world as I’d been going for 3 weeks when I got the cancer diagnosis and my first two meetings have been very good. That stone is coming off slowly so I’m going to stick with it and see if my untreated breast gets closer to the lumpectomy breast in size as I lose weight.

I had a zometa infusion. This is zolendronic acid that protects against osteoporosis. I was initially prescribed anastroszole, which I decided against, but thAt meant I had a dexa bone scan to check my bone density. As my bone density was osteopenic, ie on the way to osteoporosis, and zometa not only protects bones against cancer but also increases bone density, I decided to have that. 6 monthly infusions for 5 years Ithink. The first one really laid me up the next day. I felt like I had flu, but nurofen helped and after 24 hours it was all better.

Two days ago I had my follow on meeting with my oncologist and he said that I was now cancer free. How long I will remain cancer free is obviously unknown, but it is nice to hear that for the moment. It has been an amazing journey from diagnosis in August, through treatment and now a positive conclusion in January. My perspective has changed, I plan to stop working and spend time on things I am really passionate about. Hopefully Ill be able to make some money doing that, but even if I can’t, I don’t want to waste whatever time I have left on working for someone else. Thanks to everybody on the forums who has helped me in my darker times, [@Jolamine]‍  [@Sandra123]‍ [@Mrsfingers]‍ To name but a few.  I hope this post shows that there you can get closer to the light at the end of the tunnel, even though it is a pretty long tunnel

Thanks Marlyn, and the best of luck to you. All of us here on this forum have been through it. I wanted to show that there is an end so I'm pleased it has given you hope. The not knowing, the waiting for results, that has to be the worst part.

hugs and best wishes xxx

Hi Gadget Girl,

Thank you for getting back and telling us this great news. My you were ambitious getting back to work so quickly after radiotherapy!

I'm glad to hear that you are back at Slimming World and making some progress. I really piled on weight with my treatment. To start with I couldn't have cared less, but I have taken the bull by the horns in the past 2 years and have lost 5 stones.

Isn't it great to be told that you are cancer free?  As you say there is no telling how long this will remain - this is something that hangs over all of us for the rest of our days - here's hoping that it's a good long time. When you look back on your cancer journey , it really is an amazing journey and, I'm sure that you have come out of it a very much stronger person.

I am glad to hear that you plan to stop working and enjoy doing what you are really passionate about. Our perspectives certainly change after a cancer diagnosis.

It has really done me good to hear your good news tonight.

Kind regards,

Jolamine xx