Neoadjuvant HT

Kate -- I did neoadjuvant anastrozole for a year prior to my surgery.  My 7cm tumor decreased in size to about 2.2cm and I was able to have a lumpectomy as a result.   In terms of side effects, I had, and continue to have, joint pain and hot flashes.  I am very glad I did the neoadjuvant therapy.  Best of luck to you.

Kate, I am surprised that so many women with low oncotype scores and large ILC tumors are still getting chemo because the research came out of MD Anderson several years ago that these patients do better with the hormone therapy. After never missing a mammogram in 30 years I was finally diagnosed with a very large ILC that had spread to the chest muscle. It came up on the MRI from hell that was finally ordered because of the nipple inversion and dimpling of the skin that I had been complaining of for two years but getting normal mammograms and ultrasounds. The hormone therapy worked like a charm for me got it out of the muscle so that I could have a simple mastectomy rather than a radical. I took it for about 5 months before I had the surgery and could have had the surgery sooner but didn't want to mess up the Christmas holidays. Three weeks after the surgery I went to Florida for some R&R and then came back and had radiation. I chose to have a BMX for psychological reasons. I am 74 and was far more afraid of living with the stress of worrying about it coming back in the other breast than I was about what I look like. Let's face it no one puts 74 year old boobs on the cover of fashion magazines. Not even photoshop can perform that kind of a miracle and once they tried to kill me our relationship was SO over.

I am part of a cancer support group and there is such a difference between the women who had chemo and those who did not in terms of their side effects and recovery time. I would not say that I would never take it but before I would consider it I would pin the MO to the wall for all the research on just how much time I would most likely be able to buy and what kind of time that would be likely to be. I understand that the thing that both frustrates and fascinates cancer clinicians is the fact that everyone is different so you can't be precise and be sure but they do have averages. Cancer treatment reminds me of being asked to shop in a store where the prices aren't marked. I do understand that some people really don't want to know and I can respect that but for those of us who do I have found that you have to do your homework and be very specific with your questions. Don't ask if this is likely to do you any good. Ask how much additional time is this most likely to buy me and what kind of time is that likely to be? If the side effects are so bad that you are likely to be miserable what is the point? When you read the reports of the hot new drug so often it extends life by 2-4 months and the side effects are horrendous. No thank you.

I have been on an AI for almost 2 years now and find it to be very doable. First I was put on Arimidex and that made me very nauseated so they immediately switched me to Aromasin and I am fine on that. I have yet to have my first hot flash but then I was lucky and never had any during menopause either. I do have joint pain but I had osteoarthritis to start with so what else is new. It just hurts a little more but I have found that exercise and physical therapy are very helpful. I also have insomnia but have found a combination of medications that at low doses will give me 8 hours of good sleep and if I can sleep I can face most anything.

I am back to traveling and enjoying life, learning to live in the present and being deeply grateful for each day that I have. I say now that I do buy green bananas but I don't put off doing the fun things that I want to do. I figure that some cancer will probably take me out of this world some day but it isn't going to be today so what can I do today that is going to make me smile. I literally stop and smell  the flowers when I am walking. OK so the neighbors may think I am weird, who cares!!!!!

All the best to you, this is a very doable assignment and I think that your idea of doing hormones first and keeping chemo for a later time if you need it then makes a lot of sense. We all just do this one step at a time.

Corky, I went through several drugs before a friend who is a psychiatrist who does a lot of medication management found something that works well for me. Ambien is great stuff but quite addicting and since I have to take the AIs for years he recommended that I get off that (if you are on it wean off don't cold turkey) and go for something less addicting. I take half of a 15 mg.generic mirtazapine which is an anti depressant. Any higher dose makes me so hungry that I want to eat everything in sight which is NOT helpful and only made me more depressed. Then I add .5 mg of generic lorazepam which is an anti anxiety drug and that low dose is enough to shut off my brain that tended to go in to worry overdrive when I tried to go to sleep. Then I add 10 mg of of melatonin in a timed release form. I take it all aboout an hour before I want to go to sleep. It doesn't work fast like the Ambien does but I can sleep for a good 8 hours and not have any hangover in the morning. You just need to find a doctor who will work with you to experiment with different drugs or combinations of drugs until you find something that works. Not sleeping is not healthy and if it takes medication for me to sleep then so be it. I take medication to stay alive so adding a bit more to improve the quality of that life does not make me feel one bit guilty. I hope you find something that works for you because too many women go off the AIs because they can't find anyone to work with them to find a way to deal with the side effects and that is a real shame.

HI all!

I was so happy to find this thread. There are so few of us out there who've had or are getting neoadjuvant HT. I felt so alone during my treatment because I couldn't find anyone else who was doing it. So I avoided this site in the beginning and while I remained hopeful, part of me was suspicious that maybe my doc was experimenting on me or something, lol! He is a very reputable surgical oncologist, but you know how the mind works whenever the C word is involved! Anyways, in my case the scans showed at first it was shrinking at first, but after my re-excision it appeared it hadn't shrunken as much as we thought. Instead, the tumor took on a swiss cheese effect, imploding but not shrinking in size. After that I asked for a BMX. I just wanted it out of me. The surgical pathology showed that my tumor was about 60% dead. I'm continuing on Aromasin and so far, so good. 

I struggle with insomnia, too. I finally started taking lorazepam and that seems to work although I know I can't take it forever. I've heard Melatonin works well for some people, but does it work long term? In the beginning of my treatment and after my BMX I tried listening to relaxing music to help reduce anxiety and pain - it worked like a charm. I keep forgetting about that. 

How is everyone's bone density? I have osteoporosis but am taking Zometa every 6 months.

Take care all!