Thanks very much Patricia! The Letrozole is apparently very important (for Estrogen positive cancer) in stopping further growth of the cancer, and then once it stops growing, it starts to shrink it. I know of one woman on the MacMillan forum who's cancer shrunk 50% and was able to have lumpectomy as opposed to mastectomy, as a result. I'm all for "choice" so whilst I'm tolerating any very mild side effects, am very happy to continue with the Letrozole.
I wish you lots of luck with your chosen treatment too.
I thought I'd update you on my decision and plans: I have decided *not* to go ahead with surgery at this time.
I emailed my consultant on Thursday and followed it up with a phone call to her secretary, arranging to see her on Friday. She had received my email so understood my questions and concerns re-deferring surgery and she was more than supportive of my decision.
I had spoken to a MacMillan nurse for an hour on the phone, on the Thursday, and if it weren't for this lovely woman who listened to my concerns (I took her through my journey from diagnosis to where I am now)-I probably would still be going ahead with surgery in just over a week. She helped me to see that I am *not* actually ready for surgery and that given all the information I have, it is not putting myself at risk by not having the surgery now.
Although my breast surgeon *did* tell me (at my 1st consultation with her) that provided I am taking Letrozole, I can defer surgery, and there is no hurry...at my very first consultation (with another consultant) it was put to me that for my age, and type and size of cancer, they recommend a mastecomy with immedidate reconstruction. That was reiterated at appointment #2 with him, and it was also reiterated at appointment #1 with my female breast surgeon. As I said, it *was* also mentioned at appt. #1 with my female consultant that there is no hurry for surgery, but what I heard was "you need surgery but it doesn't have to be now"-I didn't hear "the Letrozole serves to stop the growth of the cancer and can also shrink it so some ladies choose to defer surgery to see if it will shrink enough to spare them a mastectomy". I'm the type of person who is an anti procrastinator, so if I'm told I need surgery, I'd rather get it done as soon as possible. I'm sure my emotional state and ability to take in info was compromised and I didn't fully appreciate that it will be OK to not have surgery *now*.
I'm telling you all of this because the events of the last 3 months have completely turned my life upside down. I stopped work on 8th October in order to avail myself to be at all of my appointments at the times they are offered to me (I was told off by my oncologist at my 1st appointment) because I was unable to attend at the time she had offered me (I had my own patient booked in-for his final session). I'm now officially off work and have been since early Oct. I'm now able to pick up and return to work but mentally-I feel I need a break to make sense of all that's gone on. As I said to my entire family-this whole process has been a mind f_ck.
It's been a whirlwin of a sequence of events and I feel I've had no time to process what's been happening. I am beyond thrilled that I do not need surgery and that my surgeon is happy to monitor closely the effects of Letrozole-I will be MRI'd in 3 months. Apparently, it is very difficult to "size" lobular cancers via ulrasound, but in my opinion, an MRI is a walk in the park compared to surgery and the recovery of the flap reconstruction. I am beyond happy. I'm just a little annoyed that I did not fully appreciate that surgery was never urgent, or even considered necessary-and how could I have appreciated this when it was mentioned at my first three appointments? "This is what we recommend"....I just wish they had emphasized more the role that Letrozole plays in all of this and perhaps they could have said 1) "let's try Letrozole first, and give it a year and then if no shrinkage we can review surgery options". This was not communicated. What was communicated was 2) "this is what we recommend (surgery with immediate reconstruction) but provided you are on Letrozole, there is no hurry". The two messages above do not send me the same message. Am I being a stickler for accuracy or do they not sound the same to you either? I feel my world has been turned upside down (in the 10 years I've been self-employed I've never been off work for 3 weeks) and I feel it's been all in vain. Moreover, I now do not feel ready to throw myself back into it full-time.
Make no mistake, I trust my team clinically but I wish I had not convinced myself that surgery was necessary-from what I've been told, the Letrozole is more important in preventing recurrence and growth than surgery. And when I asked about a SNB (sentinel node biopsy) I was told it would be futile (different words were used)-they are confident my cancer has not spread to the axilla based on the images they have and so if she did a SNB and found + nodes she said she would still only treat it with hormone therapy alone. I didn't quite understand the rationale for that (perhaps because I am not ready for surgery)-but let's not confuse 2 things...I am not ready for a mastectomy but if she were to find + nodes, I'd want them removed! :). In any event, I feel confident that my nodes are not + from all of their findings to date.
Apologies for rambling...just want you to have the full picture and I also wanted to convey the following message: when a mastectomy is recommended....and you are also taking Letrozole...for an Estrogen positive cancer....do ask whether the mastectomy is necessary *at this point in time* because it may well be that you, too, can afford to delay it (and may not even need it if your cancer shrinks).
Thanks for sharing your experience Bibi. I understand that you weren't on Letrozole prior to surgery, correct, or that you weren't on it long enough for it to have shrunk the cancer? It normally takes a few months before one can tell if the Letrozole has shrunk the tumour/cancer. I've only been on it 3 weeks which is why I'm seeking women who were on it for longer and saw + results from it.
Hi Maria - I have no experience of Letrozole shrinking tumour before surgery- am on it now post chemo, surgery and rads. However it had spread to my Lymph nodes and this was picked up on my very first appointment with ultrasound and fine needle aspiration. This was monitored through my chemo with ultrasound - my lymph nodes responded to FEC , tumour responded more to T + Pertuzumab and Trastuzumab.
Good luck with your decision.
I am hoping someone might be able to lend their personal experience of Letrozole (and shrinking of the cancer) as I am seriously thinking of deferring my surgery to see what effect the Letrozole has on my cancer. I'm making this decision not because I would opt for lumpectomy if it were an option (I might still opt for mastectomy) but because I don't feel ready for such a huge operation and for personal reasons, the timing is not ideal.
Some of you may know my situation but for those who don't...
Briefly: I was diagnosed in August with Grade 2 Invasive Ductal Carcinoma with Lobular features (left breast only). I was recommended a mastectomy with immediate reconstuction. No in depth discussions were had re-treatment options. It all felt a bit rushed and hurried.
So far, and from the scans, MRI, physical exams, my team are satisfied that my cancer has not spread to the axilla-but they will obviously only know that at the time of surgery when they do the sentinel node biopsy. I have been taking Letrozole for 3 weeks and any side effects are very tolerable.
My surgery has been planned for 14th Nov *however* I am not feeling confident that surgery is the right option for me at this time. a) it feels very extreme and b) I need to be fit and well and able to fly in January (my mother will be having surgery in Jan or Feb and I want to be there for her-in Canada).
At my initial consultation with my breast surgeon she said that if I wanted to defer surgery for 9 months to a year, she would be happy for me do that provided I take Letrozole (which can shrink the cancer)-I realise it may not shrink it enough for me to have a lumpectomy (my breasts are not big) *but* it can allow me to have some more time before such a huge operation. For personal reasons, the timing at the moment isn't ideal and I want to feel more certain that surgery is the best option for me. The message was: there is no urgency for the surgery.
My Oncotype Dx test score is 1 (the second opinion breast surgeon and my oncologist have both said they've never seen a score this low). This score means I am very low risk of the cancer recurring. What isn't clear to me is this: is this based on the assumption that the cancer has been removed? Presumably yes.
And so if I decide to defer my surgery for 6 months-year am I putting myself at risk of it growing?
I've emailed my breast surgeon as well as my second opinion breast surgeon; the latter replied with:
"The grade of the tumour does not progress so no it will not turn into a grade 3. That said sometimes the original grade changes after surgery due to having more material to examine (if that makes sense). Lobular cancers are mostly grade 2.
If you defer surgery and go on Letrozole you will be monitored to check the tumour is not enlarging but I would expect the Letrozole to be effective in controlling the tumour. I do not think you will be taking any risks. There is lots of evidence and scientific publications to support using Letrozole to facilitate breast conserving surgery. The success rate is higher with ductal type tumours.
With that-have any of you experienced a significant shrinkage in your cancer such that it opened up your treatment options? What is the worst possible scenario if I delay surgery? I'm thinking "that it doesn't shrink"-I understand that it should not *grow* while I'm on Letrozole. Are there any cases of growth while on Letrozole??? And are there other ways to check whether the cancer is in my lymph nodes other than sentinel node biopsy (SNB) at the time of surgery? Do people have sentinel node biopsies as stand-alone procedures? I've read that these come with their own consequences and risks. Is it worth me having this done just to be sure it hasn't spread? My team are satisfied it hasn't spread but obviously can't give me 100% guarantee until they do the SNB.
I'm just wondering what the possibilities are, what the risks are, and whether there are any cases of Letrozole shrinking the cancer down to nothing? (remission).
I look forward to hearing from you...