Thats great news, Marla. Well done for sticking to your guns and having the confidence to tell your surgeon how you feel. I think we can sometimes be intimidated by 'people in authority' - so you've done great.
Good luck with the scans - it's been a long old day for you if you're still there now.💖
Thanks very much Chocxie7, and for your well wishes for my mum.
It is exactly that-it's my gut. It's my instinct. It's just a feeling I cannot describe. And the fact that they are telling me I'm OK (I'm safe) provided I'm taking Letrozole allows me to get myself mentally ready for such a big step. I just hope they don't change their tune today. I do realise and appreciate I've left it late to let them know and I feel awful about that but I'm sure it's not uncommon for women in our position to change our minds and have different thoughts and feelings on different days. I'd rather defer and think things through than go ahead with it when I don't really feel ready...you know what I mean?
Thanks for sharing your own experience with your tumour size....that's very reassuring. I know that lobular cancers don't always shrink the way they need to (I have a lobular cancer as well as ductal) but I would kick myself if I didn't give it a go!
Will update you late this afternoon...
Thanks a million for being so supportive Helenann-it feels very validating that you understand. It *is* such a big operation, as you well know, I just don't feel I am strong enough to cope with it at the moment, nor do I want to make the decision to have the mastectomy without first giving Letrozole a go.
I am expecting a telling off tomorrow. I am also expecting that they may try and sway me to have the surgery as planned, in 2 weeks. I am petrified. A friend has offered to come with me to my appt but I politely declined. I have insisted on going to all of my appointments on my own-I think I'm nuts. I'm a firm believer that we all need an advocate, and I don't feel the BC nurse is there for me-but more for the consultant, yet I continue to attend on my own and am outnumbered.
I want to be able to be with my mum for her surgery and though she said on the phone today "please don't postpone your surgery for me"-I emphasised to her that even if she was well and not about to have her own surgery, I'd feel the same about postponing mine. I just want to feel more certain and more ready than I already do.
I really appreciate you understanding. I know you've just been through the op yourself, and am envious in the sense that you were ready to face the music. I don't think I am there yet.
Oh Marla - I totally agree with you - if you're not ready to face this and you've been assured there's no urgency you must do whats best for your sanity.No body would judge you.
I have read posts on this site that have said by taking the medication the tumour can shrink to almost nothing - so as long as they keep an eye on you all should be well. Obviously if scans show the medication isn't working or things change you can always reassess your options at that stage.
You're a really strong individual who knows her own mind and has weighed up all the options and been brave enough to 'voice' your fears/concerns.
Please keep posting, though, or keep in touch through PM if you don't want to post.
We're all here for you and will help you get through whatever decision you make- and it has to be a decision YOU'RE comfortable with - sod what anyone else thinks - its your body.👍
You have the added stress of your Mum;s forthcoming operation as well - and I think you do need to be as strong as is possible mentally to get through a mastectomy and if you're worried about your Mum thats not going to help you.
Take care and sending you lots of love and hugs.
So pleased to hear you're doing well and coping on Letrozole, and that you feel positive about your new expander. It takes time by the sounds of it but you're getting there and seeing improvements on a daily basis.
My latest post was on another thread:
I'm not feeling "mentally" ready for a mastectomy (despite having bought the bras, underwear, PJ's, and my father is booked on a flight to come over, etc.) and and after an hour long call with a MacMillan nurse this AM (I talked her through my journey from diagnosis to where I am now)-she said that it sounds like I've already made up my mind but am too afraid to voice myself to my team for fear of upsetting them. She is right. She is the first professional who has actually listened to me (as opposed to talking *at* me)-my experience of this whole process has been (more or less)-"this is what you have, this is what we recommend, let's set a date". I realise you are never "ready" for something like this but I have had surgery before (another type) and I know how I *should* feel...a lot more mentally ready than I do.
Now that I'm on Letrozole, I'm aware that surgery is not *urgent* and even my breast surgeon had said to me weeks ago (end of Sept-feels like months ago) that provided I take Letrozole, I can afford to wait and see if my cancer shrinks and I can defer surgery for 9-18 months, etc. She also said they would monitor me closely via scans.
But until now, I hadn't really had the courage (and perhaps hadn't made my mind up) to defer surgery and I fear she will be extremely upset with me given my surgery is booked for 2 weeks from yesterday. I have asked to see her tomorrow; I have an appointment to discuss my thoughts and where my head is at.
I'm sure I am not the first to choose to defer but I feel bad leaving it this late. The MacMillan nurse said that it sounds like I am very low risk and that if my team monitor me closely I should be OK, i.e., if a scan in 4-6 months shows the cancer is *not* shrinking, I'll know that my chances of a lumpectomy are slim. To be honest, I might decide on a mastecomy in a few months time anyways (even if given the choice) but *now* doesn't feel right for me. I'm just not ready.
I would like to be in Canada for my mother for when she has her hip surgery and if I have my surgery in 2 weeks I probably won't be able to fly early in the new year when she may be operated on-she doesn't have a date yet. And so whilst there is no urgency for *me*, I would rather defer and give the Letrozole a chance to do it's thing. I'm curious to know if and how much it will shrink my cancer. One lady on the MacMillan forum said her cancer shrank by 50%! This is amazing. I consider a mastecomy a last resort, and until they tell me "Marla-if you don't have surgery now you are 80% at risk of it spreading" or whatever....I am in no hurry to have it removed.
I realise I may be alone here but I'm not afraid of the cancer-it does not bother me to have it in my body. It's the surgery and recovery that concern me. The time is not right for me. As long as I am taking Letrozole and as long as my cancer is not growing (which my second opinion consultant at the Royal Marsden said it shouldn't) then I am not worried about the cancer being in me.
Let's be honest-to have a 52 mm cancer in my boob it would have had to have been there a while-it did not grow overnight. And yet it has caused me no harm till now. I am *not* being irresponsible, in that I am not refusing treatment, *but* I *am* taking the decision to defer until I feel ready. I've been told by both consultants that whilst on Letrozole, there is no urgency to have surgery.
Hi Pastasmissus - you're certainly going through the mill - sending you love and hugs. xxx
Hi Kateday - sorry the chemo is so horrible for you - hopefully they'll be able to give you something to help next time.xxx
Hi JacqB - happy belated birthday - glad you had a good day.xxx
Hi Chocxie - glad you're getting stronger and good luck with making the decision. xxx
Hi MrsLET - good luck on your return to work later this month. xxx
Hi Marla - hope all went well with your visit to your parents. xxx
Hi Xela - hope all is well with you. xxx
All September Ladies - sending love and best wishes to you all. xxx
My original mastectomy has nearly stopped leaking, just in time for my ANC that side and mastectomy and SNB the other side!
Hi my fellow September surgery friends - hope everyone is doing well.
I'm doing well - have been going to the hospital weekly getting my temporary expander filled, and I think it's going to be good.
I always feel a bit sore after the fill for a day or two (nothing awful, just tender really).
I now have 425 mls of saline in it and I think thats as much as they intend to do - I have an appointment next week with the consultant who'll confirm she thinks its enough - apparently they weigh your breast and then try to get the 'new' one as near to the same size/weight - its all very clever.
I've been taking Letrozole for nearly 3 weeks now - don't seem to be having any awful side efects - little bit achy today (but that could be the weather as much as the drug?), and I have felt nauseous (again, don't know if this is the drug or just how I'm feeling at the moment)
I'm exceptionally tired - is anyone else suffering from fatigue?
The October and November surgery threads seemed to have disappeared for a while - I've been following some whose surgey has 'spilled' over into those months - I hope people start posting on those threads again to keep us up to date (Octobers seemed to have come back but November??? Or is just me?).
Take care everyone - post a little update on how you're all getting on if you can.💖