Hormonal therapy before surgery for older women who are ER+/PR+

Options

I have been given the option of taking hormone therapy before surgery to shrink my cancer cells. I say "cancer cells" because I have architectural distortion in my left breast. My options were a wide lumpectomy with onco plastic surgery, or mastectomy.   My problem is that the three areas are in one quadrant of the breast but are widely scattered which makes for a wide excision with lumpectomy.  These options caused a lot of distress for me and my surgeon suggested doing some hormone therapy for a few months to reduce the "bad stuff" before making a decision as to the surgery. According to what I was told they are having success with this procedure in England and Scotland., especially for us older ladies. I would really appreciate hearing from others who might have done this to see how they did. Not too many posts on here regarding this subject.   Thanks.   Shirl

Comments

  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited February 2015

    Yes, I had three months' Femara hormone therapy before my surgery. This was due to having a couple of other health problems which I chose to have investigated first. When the ultrasound was done to put in the wires for surgery the RO had a bit of trouble finding the tumour as it was far less clear than on the original picture, so reckon Femara must have done some good work. All the best and hope this helps.

  • bridgegal25
    bridgegal25 Member Posts: 60
    edited February 2015

    Glad you did well with Femara.  Seems like the UK and Scotland are way ahead of the US in this regard.Scanning the internet I am not seeing much information in this regard here in the USA.  So was your lumpectomy smaller than originally planned before Femara? Thanks for any information you can provide.  Shirl

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    Dear Shirl -

    My surgeon offered me the option of a trial on Femara to see if we could clear my known malignant node and possibly avoid full axillary lymph node dissection, with its attendant risks of lymphedema. I also had a very high Ki-67 (proliferation rate) and we hoped to see that fall.

    I started letrozole (Femara) in mid-October. We re-biopsied the tumor in late November. The Ki-67 had dropped like a rock (we were shooting to bring it down to 10% or less and we hit 4%). The tumor itself had shrunk by about 50% and the node was looking much closer to normal.

    At that time a marker was placed in the node (the tumor already had one) so that we could be sure to remove the correct node at surgery.

    I had another ultrasound earlier this month. The tumor is now about 50% smaller than in November and the node looks normal by clinical indicators. No other sites were found in either breast or axilla. My surgeon says my exam is clinically normal.

    We will probably do surgery in April, to allow for a full 6 months on Femara, although she has had patients go longer if the timing was a problem for them. My oncologist and surgeon both say that it's very possible that there will be no cancer found in the node. In that case, unless something completely unforeseen crops up, I won't have to do chemo and we may be able to shorten the course of radiation, too.

    I am not in the formal trial group as I didn't want to risk getting randomized to the wrong arm but there is a large trial of this approach underway in the US (and it's about time!). I know that it's been used in the UK and Europe for quite some time with solid results.

    I have not had any problems with Femara but was told we could try another Aromatase Inhibitor if Femara did cause too many side effects - the big issue was not which drug but how was my body responding to AIs.

    For me this has been an amazingly effective treatment and I have not suffered. I know some women have side effects. Some of those pass off after a couple of months. Some are avoided and/or relieved by exercise. Compared to recovery from a mastectomy or the misery of chemo this has been very, very easy. Frankly, it almost couldn't be easier.

    The additional benefit is that I know whether AIs work for my tumor or not. Most women don't have that information.

    I am most grateful to have had the opportunity to try this approach. I would encourage you to give it serious consideration. If you have any questions I can answer, I would be very happy to do so.

    I apologize for the length of this post. I hope it will help compensate for the dearth of information on the web about this.

    Whatever you decide, best wishes for your recovery.



  • bridgegal25
    bridgegal25 Member Posts: 60
    edited February 2015

    kayb -- sorry about the language.  I am new at this and didn't know what to call it. How did the two women do on the therapy.  I am hearing good things. Appreciate the feedback.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015
    The technical term is endocrine therapy. You'll also see it referred to as AIs - Aromatase Inhibitors. I hope that helps. Cancer has an entire language of it's own that you'll pick up quickly.
  • bridgegal25
    bridgegal25 Member Posts: 60
    edited February 2015

    Hi hopeful8201.  You made my day with your post.  As soon as my surgeon's nurse mentioned this to me on Monday, I jumped for joy.  My appt. with the oncologist is Monday.  There is no question in my mind that I'm going to do it. I am older and very post menopausal and my KI67 is 15 along with the ER/PR strong receptors.  I am very happy for you that you had such a great response. Maybe you will be able to avoid surgery and just stay on the Femara. And I sure do appreciate the lengthy explanation.  You told me everything I needed to know.  I am aware of some of the side effects but I work out frequently with treadmill and weight training so hopefully that will bode me well. The US needs to get its act together on this treatment. England and Scotland are way above us but now we have the opportunity to make use of it. Thank you!!!   Shirl

  • bridgegal25
    bridgegal25 Member Posts: 60
    edited February 2015

    Just saw your second post, after replying to your first one.   I have to change the title of the topic if I can.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    Dear Shirl: Your note really lifted my spirits - thank you!

    I walked out of my surgeon's office after that first discussion of Femara feeling hope for the first time in over a month - much like you with your surgeon's nurse. I think it's a terrific approach and truly regret that more women in the US aren't offered it. If there's anything lucky about breast cancer, you and I are the lucky ones. And you are so correct that the US needs to catch up with the rest of the world on this!!

    Since you already have a great fitness program in place you will probably be able to easily ride out any side effects that do arise. Or you may get really lucky and just not have any! I hope so!!

    If you want to change the title of a thread, just go to the Private Messages tab on the upper left side and send a message to the Moderators. They'll clean up spellings, terminology, whatever needs to be done. But don't fret about it. :)

    I hope you'll have a good meeting with your oncologist next week. Please keep us posted, if you care to. And very, very best to you.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    Kay, thanks for sharing your friends' experiences. It's really good to hear of others who are doing well. I feel as though, at least in the US, we are a small, but hopefully growing, club. Please pass on my well-wishes to them if you talk with them.

  • bridgegal
    bridgegal Member Posts: 7
    edited February 2015

    I have been high as a kite all week since I got this information.  But of course, in the back of my mind I keep thinking that another shoe will drop. Staying positive is tough.  Hopeful -- befoe you started the Femara did they give you any pretesting, e.g. bone density scan?  And yes, of course, I will post my discussion with oncologist which is next Monday. Here's hoping we don't have another Monday snowstorm in NJ which seems to have been happening for the past six weeks.  Thanks to all who posted some input.

  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited February 2015

    I think certain factors are still being looked at in the UK - as well as the tumour I had an axial node which showed abnormalities on original biopsy (suggestive of Hodgkins). This held up surgery and although the Onc said she thought it unlikely to be so, it was decided to take the node out during the bc surgery and it proved to be non cancerous on path although I have never discovered just what was wrong with it. Fortunately I refused axial clearance on quality of life grounds,and US a few weeks post surgery showed no problem there so it seems Femara did have an effect on both the bc and the node.

    It is very difficult for any of us in the UK to get any information at all. The health service works well enough but one never sees the same person twice and patients are never given any information without asking and this is very difficult for bc sufferers who have no idea just what is what - and yet are asked to decide whether they want rads or not and told it is their decision whether they take hormonal therapy or not. Fortunately I worked in health for many years and am fairly switched on but I fear that most women here are incredibly ignorant about bc.

    Without this wonderful website I would never have had any idea what to ask and what was relevant - so consider yourselves lucky to have the healthcare you have - although I do sometimes get the impression that the wallet is leading the endless examinations/consultations you have!

    Ever onwards! All the very best to you all.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    Hi, Gemma - thanks for providing a look at the NHS from a patient's point of view. There's much that's good about it but it faces challenges of its own, albeit different from those in the US.

    How are you doing with your radiation?

    Shirl, I had my usual DEXA and mammogram together - went in totally blase about everything. A few days later I got the call back and, of course, my world has been turned upside down. So, yes, I had a baseline DEXA, which is helpful. I also had a CT scan, bone scan and MRI (of both breasts) as I already had a very malignant node. (Not such a large tumor, but high growth rate, grade 2, and clearly invasive). All of those were fairly normal. I say fairly because CTs are so sensitive these days that they pick up all kinds of stuff that doesn't really matter. My bone scan had fun with all my crumbling joints but was otherwise clear, thank goodness. I will admit that I was pretty well petrified until I started getting good reports back, however.

    My surgeon's office did test my Vitamin D levels and found them low - an issue I've dealt with over the years, so not surprising. I'm following orders and upping my D3 supplement. This, along with calcium and magnesium, will help protect my bones (we hope!). You might ask about having your D tested if it's not been done recently. In norther latitudes it's almost impossible to have enough in your system without supplements.

    It IS hard to stay positive and yes, there's definitely that sense of expecting the other shoe to drop. That's something I HATE about this disease. I'm not sure what the answer is because I've certainly not gotten to the point yet of achieving a "new normal."

    I'm crossing my fingers that the storms won't interfere with your appointment on Monday, Shirl. In the meantime, I hope you'll have a good weekend, despite everything. Allow your mind opportunities to get away from cancer for a while, even if just shoving it to the back of your mind for a moment at a time. Have a good workout or three, work off some of the tension and build your muscles up even more so you go into surgery (eventually) in peak form. Take care of yourself and allow yourself to hope. You've landed on your feet by being offered the neoadjuvant endocrine approach - let's believe that it will work out well for you.

    If you have any questions or just need some support, let me know. I usually pop in way too often!

    Gemma - I hope you'll have a good weekend, too. We're having an early spring her in the Pacific Northwest, Shirl's having endless winter (never Christmas) - what about you?

  • bridgegal
    bridgegal Member Posts: 7
    edited February 2015

    Hi Gemma from London. I grew up in England (North London)  and came over here many years ago.  I am aware of all of the pitfalls of the NHS but at least they are doing research which is far ahead of us.  I hope and pray that our health system does not go to that level because, to be quite honest, I am on Medicare and it's great.  I am extremely impressed by my doctors so far with the BC issue,. I know I would not have that in England right now. Their communication is incredible. They lead me to where I am now with investigating the endocrine therapy before surgery.  Hopeful -- I have been tested for Vit. D levels before dx and they were fine but I supplement with 4000 units daily. I might up that now.   And yes, I intend to have a good weekend.  Going out with friends (widowed twice to two great men) but have built a new life for myself and I sure don't intend this dx to stop any of that.  I am positive.  I have survived much crap in my life and to repeat, this dx is not going to get me. 

    Forget the Northeast and this winter. Worst I've experienced.  Another storm coming Sunday. And it's so so cold out.

    So enjoy your spring Hopeful.  We can't wait here in NJ. Counting the days.  Ladies, thanks for all of your input. It's much appreciated.  Keep on posting on this great site. We are blessed to have this. Enjoy your weekend.  Shirl


     

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