helenann, that's lovely to hear. I just had my annual mammogram results today and all still good on my good side, one year on since surgery. Post scanxiety stress over......... and breathe.... xx
I've just been reading back to this thread I started 3 months ago - I've come so far as here I am post surgery, well on my way to my reconstruction after right mastectomy with immediate reconstruction tissue expander, started on Letrozole and feeling positive rather than sad.
So anyone newly diagnosed who is feeling in despair take heart - you do get there.💪👍🌈
Hi Marla - thanks for the welcome home - I had a great time and my mossie bites are healed - dreadful coming back from 32 degress to this cold, wet weather.🤔.
Thanks for remembering I have my surgery tomorrow as well - I have to say i've been 'OK' through all this mostly but I'm having MAJOR wobbles tonight. I was packing my bag for the hospital and was putting my post surgery bra in the bag and I had a little cry.
I'm also very nervous about the actual surgery - sure I'll be OK though.
I'll be able to let you know how my reconstruction goes - might help you with your decision.
Do you have a date for your surgery?
I just wanted to say "welcome home" from France and best of luck for tomorrow! I hope everything goes as smoothly as it possibly can and please know that we're all rooting for you and thinking of you.
Wishing you a speedy recovery and hope to hear from you once you get home from hospital and settled.
Hi Mai-thanks. I think we may be going off on a tangent-I'm not concerned about lymph nodes-he said the axillary looks all clear from the MRI (though they *will* check this at the time of surgery) vis a vis Sentinel Node biopsy. I don't feel the need or urgency to have an ultrasound guided biopsy before then.
It's more that I want to be *fully* informed before I make any decisions about certain aspects of my treatment. I'm actually fine-emotionally. I just want to be sure I have all information available to me before I make any decisions, and as before-some of this info. will not be available to me until the time of my surgery.
Marla, you're welcome. I know how you feel - its a very daunting time. Maybe you could ask for a guided ultrasound biopsy on the lymph nodes. Some of mine were enlarged which is why they did the biopsy but if yours are not visible on ultrasound it will be harder to do, however, this is good news as is means there is probably less risk of lymph node involvement. xx
Thanks very much Mai, for the name of the other thread.
I am going to wait for the ultrasound and my next appt. with the consultant, and I think at that point I'll need to make decisions so I'll keep this message of yours bookmarked and refer to the other thread nearer the time.
Thanks am million for your help with all of this!
Hi Helenann-I hope you're having a lovely time in France? Thanks for replying whilst on holiday!
Yes, it sounds like we have a similar cancer. I was told mine is IDC with lobular features/elements. Re-the nodes taken-either they've not that conversation with me, or they are just taking the one node (?) as he said he is recommending a sentinel node biopsy...I think this is where they test and take just the one? I'll gain clarification over that nearer the time to my surgery.
I've been thinking about my radiotherapy/reconstruction concern and realised last night that regardless of what I choose (immeidate or not) I may end up with two surgeries anyways...so if I delay recosntruction, till I find out whether I need radio or not I will definitely be having 2 surgeries, and if I choose immediate reconsutruction and then find out I need radiotherapy, *if* the radiotherapy affects boob size or shape, etc. I will most likely have a 2nd surgery too, but the second scenario is more favourable because there *is* a chance I may not need radio-depending on what they find at the time of surgery. So the immediate reconstruction seems the favourable route for me too. I just want to ask them whether "fixing" an existing reconstruction is as easy/more complicted than doing the original reconstuction-I want to make sure I am left with the most aesthetically pleasing boob possible, and if they say a 2nd surgery to fix a distorted boob (from radio) never looks like the original reconstruction, that, again, many alter my mind. So a lot of questions at this stage and a lot of unknowns. I'm keeping my options open, so to speak:).
I know for certain that he mentioned my radio would be to the chest wall-if I do need radio.
Have a really lovely rest of your holiday!!!!
Marla, I think the *now* is a bit of a problem in the decision algorithm since there are still unknowns and I don't know how you decide around the unknowns, regarding the recon and rads scenarios. I knew I was lymph node positive from an ultrasound assisted biopsy, before I had any surgery. It may be worth going onto the going through treatment>surgery thread on this forum to ask if anyone else has been in your position and what they did. xxx
Thanks Mai! I know that I have the tendency to think ahead (I distinguish worry from "thinking" ahead) in that I want as much info. as possible *now* in order to make the best decisions for myself later. I do understand that my team will guide me, but at the end of the day, and as many patients as they have treated...we each have different preferences at every step of the journey and what may be best for one patient may not be best for another-you know what I mean? But I hear you loud and clear. Inquisitive is an understatement....I'm more a "need to know" gal:).
Marla, glad to help. Just take one step at a time and don't look too far ahead on that pink horizon of yours! My opinion is: be inquisitive but be guided by your team - they've seen it all before. Loss of control is very hard to cope with, I understand that. xx
Thanks very much for your message. I'm so relieved to hear you survived the chemo! :).
I have an ultrasound coming up (hopefully this week) and the only biopsy I had was after my second mammogram-not sure if it was of the lymph nodes-I don't think it was. The consultant said I will have a sentinel lymph node biopsy at the time of surgery which is when they will know more re-radiotherapy.
Re-the chemo....he said that with what he knows at the moment re-my data-it is not necessarily implicated (and he's not recommending it before surgery)-surgery is definitely my first treatment step-and once I've had the surgery they will know more re-the radio and chemo.
Marla, you're the same as me ER+ HER2- but my tumour was too big and diffuse to be measured at diagnosis and after chemo the monster shrunk to about 9cm and here I am still alive!! I did get clear margins too. The decision on chemo may depend on lymph node status by the sound of it. I really dont know what to say about the reconstruction because I see your position exactly as you have assessed it. I think just ask lots of questions on your surgery appointment and make sure you are happy with the decisions. Have you had a lymph node biopsy and/or ultrasound? xx
Hi Mai-thanks very much for such a detailed reply-yes, indeed! I am confusing stage with grade. What a relief. I still have so much to learn about all of this-it's daunting!
I did ask about the oncotype Dx test and whether I could have this test before I decide re-chemo and he basically said, yes, to the test, if there are no + nodes, but if there is a positive node, they wouldn't do the test on me (I could opt to have it done privately-but he said the NHS won't fund it).
I just want to be sure that the benefits of chemo outweigh the risks-when the time comes to having to make that decision (if it indeed does come to that). My fingers and toes are crossed that I won't need chemo.
My cancer is Estrogen + and Her2 - but the area is large which is what is concerning me. Having said that, I'm having the boob removed so hopefully, given the axillary looks good at the moment, I won't need chemo.
The issue with deciding on immediate reconstruction or delayed is that I *can't* make that decisin fully informed, because I will only know if I need radiotherapy *after* the surgery. So how does this make sense? It doesn't:). I cannot decide on immediate reconsruction without knowing whether I will need radiotherapy *unless* I'm prepared to risk having the reconstruction altered by the radiotherapy.
He mentioned if I needed radiotherapy it would be to the chest wall-I suppose I just need to wait and see. I still have an ultrasound on my list of things to do:). Hopefully this week and then the surgery picture will be clearer, for them, and for me.
Hi Optimissy-yes, you are definitely right! I *am* confusing Grade with Stage
Thanks for the link-I'll definitely have a look! What he said now makes sense though, now that I know Grade and Stage are not the same thing!
Hi Loolarch-thanks so much for the above! What you say all makes sense but from what I've been told, I won't know whether I need radiotherapy until after (or during) surgery-however if I am expected to make a decision "immediate" or 'delayed" reconstruction-prior to surgery, and before knowing whether I'll need radiotherapy-it's logistically not possible-is it? I know for certain that if I won't need radiotherapy, I *will* want the immediate reconstruction, however if I will need radiotherapy-which I won't know until after I need to make the decision re-immediate or delayed reconstruction-that puts me in a difficult position. Cause I'm expected to make a decision re-my reconstruction in the absence of all necessary info, specifically-whether I will need raiotherapy or not. I hope I am making sense. 🙂
I'll have an opportunity to discuss my concern with my surgeon when the time comes, but I just thought I'd throw it up to you ladies for your thoughts at this very preliminary stage.
Marla, my immediate observation is that you may be confused between grade and stage. The grade of the tumour can be 1, 2 or 3 and this is the histology of the cell mutations: 1 being less mutated and 3 being the most abnormal and mutated. The staging refers to the advancement of the cancer and goes from 1 - 4, 1 being small tumour and so on this diagram explains it nicely: https://breastcancernow.org/about-breast-cancer/have-you-recently-been-diagnosed-with-breast-cancer/...
With regard to radiotherapy, its used for local control whereas chemo is used for systemic. There is a protocol for deciding administration of chemo and if you score high it will be recommended whereas if you are borderline you may be able to make that decision. I assume you haven't been given a score yet? This may be more likely recommended on Triple negative as there are no receptors to block with other medications and chemo is more likely with larger tumours and lymph node involvement. I think until you know more information it's difficult to think ahead and your medical team are probably in exactly the same position for the same reason, if that makes sense. With regard to the surgery and radiotherapy, my personal choice would be to delay recon if I knew I was having radiotherapy but as you dont know yet you are not in a position to decide. It also depends whether the radiotherapy is to the whole chest wall or just delivered to the local tumour removal area which will have less impact on the whole breast. I hope this adds a bit more clarity. xxx
Very glad to hear MRI didn't show up any surprises!
A couple of points to add re your questions. Regarding Q1, if you know for sure that you want reconstruction and have it done immediately, then that is one op. If you do need radiotherapy, which you may well not need, then there may be a possible, though not definite, second op. However if you delay reconstruction you will definitely need two ops and two recovery periods. For what it's worth, at the point at which I was in your position, I was going for immediate reconstruction for those reasons. However, after MRI detected bilateral tumours, I opted for no reconstruction, though I do of course have the option for future reconstruction. At this point, nearly two months post surgery, I don't feel anywhere near facing further surgery!
Q 2. I don't think radio vs chemo is an either or situation. Radiotherapy will deal only with local i.e. Into local breast tissue (which doesn't apply if you have a Mx) and maybe chest wall, whereas chemo is systemic treatment (not just local). As nobody would chose to be in a position to need either, that will be why it is very good news to avoid either, or both!
PS to save you navigating round the site, here is a kink to the bit you need about Grade and stage -
If it doesn't work, just go to the main info part of the site and go to Diagnosed with Breast cancer as htere is lots of info there.
I can certainly identify with you in wanting as much info as possible - I did too. I didn't have a mastectomy so can't answer re the reconstruction, but just wanted to give you the heads up re Grades. I think you may be confusing Grade with Stage - I did at the beginning. I think Stage is about whether it has spread and Grade is about the appearance of the cancer cells. Check out the info on this BCC website and it will explain the difference clearly, and hopefully reassure you about the fact that Grade 2 won't change into 3, as your surgeon said.
All the best. X
Hi lovely ladies,
I thought to post my update here since this is the thread I've been most attached to from the start. I have some Q's for you but realise it may be too early in your own journeys to know the answers but that's fine-just say so:).
I saw the consultant yesterday and as I suspected, a mastectomy is what is being recommended given the size of my cancer (52mm=5cm) relative to the size of my breast. That's fine with me. He also said I am likely to avoid radiotherapy with a mastectomy. He said the axillary looks normal on the MRI but they *will* be doing a sentinel lymph node biopsy at time of surgery-that's good. To be clear, I am talking about my L boob. The right one is all clear. So I'll be having just the one breast removed and reconstructed.
He recommended mastectomy with immediate reconstruction (should I want reconstruction-which I do) as best possible outcome for me given my age. He said that immediate reconstruction gives me the best aesthetic outcome, but when I said "I've heard that if radiotherapy is warranted, then it's best to do the reconstruction *after* the radiotherapy, he said "that is old data".
He said radiotherapy can alter the reconstruction but there is no reason not to have immediate reconstruction. He went on to describe some possible complications from radiotherapy to the reconstruction....it can harden the tissue, cause local inflammation and can stiffen the breast, it can also distort the shape, and make the breast smaller, firmer and increase complications…so I’m still thinking "so why would I want to do reconstruction *before* I know if I will need radiotherapy for certain"?
The reality is this (as some of you may already know)-if, during the mastectomy, they find that the change is above (higher than) 5cm (if my cancer is larger) then radiotherapy to the chest wall will be recommended. It will also be recommended if they find positive nodes. This may also indicate chemotherapy.
So, my 1st Q. for you is about reconstuction-to do before or after radiotherapy? How can I possibly make the decision to opt for immediate reconstruction when I do not know whether radiotherapy will be indicated. If it will, I would prefer to have reconstruction later, to avoid further surgeries down the road to "fix" any of the complications the radiotherapy may have on my L boob. Am I making sense to you? (please say yes) :).
My second Q. is this: why would it be good news to be able to avoid radiotherapy, when it's the chemo I'm really frightened of. I have yet to hear "you won't need chemo". They won't know that until the surgery re-are there any positive nodes, etc. Why is it good news to avoid radiotherapy? How do chemo and radio differ? Is it that there are more risks from radiotherapy, and is this the treatment to avoid if at all possible? From the side effects women have reported, it would seem to be that the chemo is the more gruelling treatment.
If you have any knowledge of the difference between the two, and why the radiotherapy can be avoided in some cases but not chemo-I'd be interestested in learning more about this. From what I've read on this forum, it would be the chemo I'd opt to avoid:). Then again, I do know that radiotherapy has it's own risks too but the side effects (SE) seem more tolerable than chemo-correct?
I asked about chemo for me-he said I may not be able to avoid it. He said at the moment, no indication for chemo but if they find it spread (from surgery and lymph node testing) I may be recommended for chemo.
All I know if that if I am recommended for it, I want to be sure that the benefits of having it outweigh the risks.
My final (and third) Q. is re- a Grade 2 cancer turning into a Grade 3. At the moment, my cancer is Grade 2 IDC with lobular features (this was from original histology report-I have yet to receive a copy of MRI results). From what he told me, all the MRI added to the original biopsy report was more clarification on size (52 mm=5cm) and it also showed that the axillary looking normal (good news). But I jokingly said to him "how long can I wait before this Grade 2 becomes a Grade 3" to which he replied "it won't". He said "time" does not determine whether a Grade 2 becomes a Grade 3-he said they will know at the time of surgery, whether the cancer has spread but "waiting" etc. will not make it spread.
So, to me (and forgive me if I sound like a complete dummy), this suggests that if, at the moment, I knew for certain that my cancer has not spread-why on earth would I want surgery and other treatments if *time* will not move it from Grade 2 to Grade 3? Is my Q. making sense to you?
I assumed that for sure, the longer you wait and *don't* treat cancer, it will eventually spread. He is suggesting this is not necessarily so.
Or perhaps he is saying "some cancers spread, and others do not" and we don't know which ones will/won't and so we recommend treating all of them.
I just can't get my head around why would I need a mastectomy if time will not cause my cancer to spread. Perhaps I'm missing the point in that there are other factors, besides *time* that can cause cancer to grow and spread. I have a feeling this last question is too biological in nature for this form:). I really need a good half hour with an oncologist! I don't have an oncologist yet. I am now due an ultrasound on the full L boob, and then hopefully can start making surgery plans/set a date, etc.
As you can probably gather, I like to understand *everything* and the time I get with the consultant when I see him just doesn't allow for these in depth questions.
If you can shed light on any of the above, please feel free.
Emotionally and mentally-I'm fine. I'm just keen to get the surgery ball rolling only because I'd like this to be done before X-Mas!:) He did say within 4 weeks, but I do need to give my clients notice-and want to give them 4 weeks notice (this is the done thing in mental health), so I can't see this going ahead until end of Oct earliest.
I am going to try and stay off the computer for most of today so if you do contribute and don't hear from me till tomorrow-thank you in advance and I'll be back tomorrow, if not before:).
Hi Scatterbrain - welcome to this forum - you will find it a wonderful source of love, positivity as well as loads of infor to help you at every step along the way.
You did better than me to last as long as you did before your first melt down - I was diagnosed on 8th August, my husband was with me - so I took the 'news' really well - like you because I was considering others as I could see my husband was really shocked - I continued to be 'brave' for the next few days but had my melt down 2 days later. I think it was because my husband gave me a hug and that was it - I was gone.😪.
I pulled myself together and have more or less stayed calm for most of the time - I then had my next melt down last week when I got the results of a second lot of biopsies and was told I had to have a mastectomy. I had sort of built myself up to having a lumpectomy and done loads of reading on this forum about experiences of this procedure - so felt I was back at square one.
I started this thread when I had my first melt down - hence the title - but do you know what - I feel like I have come such a long way since those very early dark days - especially with the help from the lovely ladies on this forum.
So, take it from me things do get better. I still get 'down' of course from time to time - but now I have a direction and know where I'm heading i'm much better.
Also try and let your guard down once in a while - it will do you good to cry and get a hug to make it better - you don't have to be the strong one all the time. You sound like me - trying to 'play things down' and saying 'I'll be fine' all the time to protect those you love, when you don't really feel fine or so sure of things at all - but a good old cry on someone's shoulder does you the world of good - then go back to being the strong one again and once you have a proper plan in place things will fall into line for you I'm sure.
I had my pre-op assessment today - all went well, the procedure explained and I'm having reconstruction at the same time.
I go on holiday tomorrow - and am determined to put this to the back of my mind and have a great time.
I get back on 22nd Sept and have the surgery on the Monday 24th Sept - so all systems go.
I hope any more new members reading this take a bit of comfort from the fact that I was in a really 'dark' place in the begining and look at me now -well on my way. (with loads of thanks to everyone on this forum).👍😍💝
I agree with all you wrote. I think it's the thought of "losing a breast" for all of us, that we need to come to terms with (if that's the decision we take), but once we can accept the idea, we can then focus on the advantages of the decision. I am confident that you have made the right decision for *you*.
I'll of course update you once I have my biopsy results-should be next Friday (14th)!
I'm sorry it wasn't the news you were hoping for, but for what it's worth, and from someone who is only having her MRI tomorrow, I've already decided to opt for a mastectomy (unless they advise that only a very small area needs to be removed-which I somehow doubt will be the case). There are obviously pros and cons to both lumpectomy and mastectomy, and the one very big "pro" for the mastectomy is that there is a smaller chance of recurrence of the cancer (in most cases). I'm 51 years old and if removing my breast means I can avoid having to go on this journey again, in another 5-10 years....I'm in:).
I have yet to know how big an area my cancer is occupying-hence the MRI tomorrow but honestly, I think there are important advantages to having a mastectomy.
I found this article helpful:
It's all about the pros and cons, and obviously different women attach more/less weight to certain pros/cons than to others-it's all personal choice, but I thought I'd give you my take on it, for what it's worth!
Enjoy your very well deserved holiday!
Right, so it looks like they are going to do what’s best for you... I was fully prepared for a mastectomy and didn’t know until I came out of the op whether I’d had one or not, but I got lots of wonderful reassurance on here as to how easy it was, so take heart like I did, from those lovely people who’ve been there, - it’ll be OK.
It’s going to get sorted on the 24th, right enough, so concentrate on that being the next step to kicking this, but for the moment, hey, put it to the back of your mind and enjoy that holiday.. and yes, you have the best time ...😍...
Well done, you are getting there!
Hi - well it's not the best of news- I will be having a mastectomy. I've been advised that the whole breast is 'unstable' - I was told if I really wanted to continue to try and preserve my breast they could do more biopsies - an MRI guided biopsy - but it was felt it was only delaying the inevitable and I would end up having to a have mastectomy in the end in any event and as this has been being investigated for 6 weeks already it was only delaying things further.
So had a good chat with my BCN, Donna (who is so lovely) and my husband and we have decided to not keep on with further investigations and go ahead with a full right breast mastectomy.
Chemo can't be ruled out at this stage either and I will be on some drug therapy for about 5 years.
I have to say I feel quite relieved in a way to have the decision made and a plan in place.
So, post op assesment on Monday - to France on holiday on Tuesday - going to have the best time ever - then back home on 22nd Sept ready to get rid of this 'thing' on 24th Sept and get on with living.😀
Ditto to Thistledown Helenann! I'll have fingers and toes crossed for you that you get the outcome you are hoping for! Sending lots of positive vibes your way for the best possible outcome.
Second lot of fingers being crossed for you ! Sure plenty of others on here will be doing the same...lots of fingers...
Best of luck 🍀🍀!
PS - am doing ok, thanks! Xx
Hi Thistle - yes its tomorrow I get the results of the biopsy on the 2nd 'suspicious' area - so this time tomorrow I should know whether its a lumpectomy or a mastectomy - so fingers crossed for it to be benign and to be able to have the lumpectomy.
Aren't you good remembering about me - thank you SO much for your continued support 😍. I'll post tomorrow with the outcome, my appointment is at 2.50 so it might be later on in the afternoon.
Hope you're doing well, too.
Is it tomorrow for your second lot of MRI results ? ( I know you have op scheduled for 24th, it’s coinciding with my own appointment with oncologist, hope it’s a happy-and-all-goes-well coincidence for us both ! )
Anyway, thinking of you and I do hope tomorrow goes well, have you been to France yet ?
Ditto to what the other ladies have said! At least you now have a date, for both today's biopsy results, and your op, and you can now hopefully enjoy your well deserved and needed holiday "en France"! Bonne vacances!
I'm so pleased to hear that your good breast is still good! You are a brave woman, having another biopsy today. My first one was 12 days ago and my boob is still bruised and tender. You really are my hero:).
Have a wonderful holiday and I'll be thinking of you on 3rd Sept, hoping it's good news.
Hi Thistle (i'm getting familiar with you now shortening your name🤣). I was so late posting because it was long old gruelling afternoon and didn't get home until gone 6 O Clock - just chilling now.
What would I ever have done without you lovely lot. Thanks SO much for all your support and encouragement in this journey so far - will be keeping in touch with everyone in the meantime, and will update once i know my 'fate' on 5th Sept.😘😘😘xxx
Thanks Paulus - feeling a bit better now I have a date - so will tell the kids at the weekend - and put a positive spin on it for them - its treatable, caught early and i'm going to be just fine. 😍
Been haunting the forum waiting for your post, 😅 - so glad you have your hols, (and what, not in Dallas ? 😉) - hope you really enjoy France..
Your ‘good and bad’ news is encouraging too, (a bit similar to me, didn’t know at point of operation whether it was to be a mastectomy !), hope it’s good news on 3rd September..but before then, chill, enjoy your holiday, a well-deserved break !
As Paulus said, Bon Voyage, bonnes vacances (and bonne chance for September..)
I wish you strength and some inner peace. You have done all you can for now, know all that you can for now, and whenever you look in on the Forum someone will be here, whenever you need.
Safe journeys, Bon Voyage, and give yourself the vacances you deserve !!! xx
Hi Ladies - well good and bad news for me - the good news first - my 'good' breast is OK nothing shown up. The bad news - they've found another lump in my 'bad' breast after the MRI - this needed a biopsy, so had that biopsied today. The Consultant said if this 'new' lump is cancerous then I will have to have a full mastectomy, as it is too far away from the 'main' cancer - if its benign it will be a lumpectomy and radiotherapy. I'll get the results from this biopsy on 3rd September and will know then which it will be. I'm going to have the operation (whichever it is) on 24 the September.
So to finish on a positive note more good news is that they were great when I told them about my booked holiday and they went out of their way to schedule all future appointments and the op around my holiday. France - here I come.😍😍😍