Hi,
Was diagnosed on Friday, lobular invasive 15mm tumour, Grade 2, oestrogen +ve. Still waiting for Her2 result.
Was told surgery will be early Feb (have already posted about the wait time/delay and am seeing if I can be treated sooner) in the meantime … consultant told me to have a think and decide which surgery I want to take, either a lumpectomy + radiotherapy or a mastectomy.
Both options would be followed up by additional treatment if needed depending on lymph nodes results after surgery. Both also mean taking Letrozole for 5 years.
I was also advised that either surgical option had the same outcomes with regards to longer term prognosis.
I feel I have no way of choosing on the basis of “best” result as both appear to give the same outcome !
On one hand it would be “nice” to keep my breast but that that involves first the lumpectomy, possibly further surgery if margins aren’t clear plus a course of radiotherapy and all the problems that go with it.
On the other hand, the mastectomy is just one procedure but the loss of my breast which I think I can deal with (I would not go for reconstruction) and having looked at pictures potentially a scary scar.
I am going round in circles and crazy trying to work out which option is “the best” - it’s an absolutely c**p choice.
If anyone’s got any advice I’d be very gratefully .
So sorry that you find yourself here. Whichever you chose will save your life.
Unfortunately I can’t help you to decide as mine was too big to give me a choice.
I hope you come to a decision which you will find to be the right one x
I was the opposite to @isitreallyme - mine was too small to be given a choice . There were other choices to be made though and it’s awful trying to make them - yes it’s s**t . Rather than thinking maybe talking it out would help - so perhaps you could contact the helpline if you haven’t already.
Also think about whether if you had mastectomy you would want reconstruction and if the answer is yes then try to find out what options are viable for you as regards that and what that would involve .
I don’t know enough about HER2 to know if that would change the outcome much ( I’m assuming not if they already offered a choice ) but it would seem to make sense to wait until all the results are back before you decide.
My friend was invasive lobular ER + HER2 negative given a provisional Grade 2 and had lumpectomy + plus 4 SNB ( all clear ) and radiotherapy . Her Oncologist downgraded her to a 1 afterwards. She’s been fine apart from struggling with the endocrine therapy but was not offered mastectomy either. She doing really well . My other friend had lumpectomy / SNB + radio + Tamoxifen about 10 years ago and she’s fine . Another lady who swims with sometimes is many tears post mastectomy and she is also fine.
If I personally was asked to have another lumpectomy I would but having had radiotherapy already if it recurred on the same side I might be offered mastectomy next time and I would probably take that option.
As @isitreallyme has said the important thing is that you’ve been diagnosed and you are going to get treatment that will save your life. Whatever your choice there are no guarantees that it will be straightforward. I was the very lowest grade and it wasn’t straightforward for me - failed trial procedure 7 weeks wait wait for lumpectomy /SNB though that was straightforward forward with clear margins and node negative .
Whatever you decide we are all rooting for you Bee2.
Hi
I was diagnosed in October and having a double masectomy tomorrow morning with tissue expanders and immediate reconstruction …
All I can advise is to look into every option and choose what may feel right for you…
a DM was a no brainer for me my BC is also lobular stage 2 but I have ductal in the right which my surgeon says is unusual but will be treated the same the hardest thing was choosing what to go ahead with after recon or no recon
It really is hard to be given a choice of what surgery to have as I would of been less stressed if they said you don’t have a choice as it certainly is harder to get your head around trying to make the right choice …
Lobular apparently is a very slow growth but I get it you just want It out …
I went to my doctor’s in August most tests were done September told in October
And now here surgery tomos
I feel for your thoughts but remember it’s your choice look up everything good luck xx
So sorry to hear this news, wishing you well going forward. I can understand this is a difficult decision for you and one only you can make.
I have had both surgery, The only advice I could offer is a lumpectomy is easier than a mastectomy, in terms of healing, however you would have radiotherapy to cope with. I didn’t have any problems with Radiotherapy , but I know some do.
A difficult decision for you, but take one day at a time and I’m sure you’ll come to the right outcome.
I had a 16mm grade 2 ILC. I wasnt gjven the choice, but was told the lumpectomy plus radiotherapy was the equivalent of having a mastectomy. Given the choice I would have still gone with lumpectomy plus radiotherapy, as I wanted to keep my breast if at all possible. Luckily my margins were clear, however I had significant lymph node involement so had to go back in for a full lymph node clearance. Radiotherapy went better than I expected, use the moisturuser religiously.
In my head I have a back up option of a mastectomy in the future should I get a local recurrence!!. No easy choices Bee2 , and horrible to have to make it. Go with your gut instinct. When the consultant gave the 2 options what did you immediately think? Whatever you choose it is the right decision for you. My very best wishes to you.
I had bilateral invasive ductal tumour and have a double lumpectomy. My surgeon said it had the same outcome as a mastectomy but less invasive and I would keep my breasts. I am not small chested so I have quite a lot of my own breast tissue remaining.
I am ER+ PR- HER+ grade 2 2cm and grade 1 0.9cm. The HER+ is just the addition of Herceptin with chemotherapy. I’ve just finished 12 weeks of Paclitaxel with 3 weekly Herceptin until September 2024. I don’t think this makes any difference to the surgery option. I have also been referred for genetic testing/assessment and if that goes ahead I may decide on mastectomy as future prevention. But that is way in the future.
Being lobular rather than ductal I understand it grows flatter or longer within the breast and therefore more tissue may need to be removed. I would hope that the surgeon would talk you through both options with risks and benefits to give you the option to choose. Could you call the breast care nurse and chat it through again? They could even get the surgeon to call you.
Also BCN nurses will be happy to talk you through each surgery option on 0808 800 6000 or send them a message here Ask our Nurses | Breast Cancer Now
I wish you well with your surgery which ever you decide.
Poor you - that’s a long wait for surgery. 15mm is small - my ILBC was the same size and same grade but an MRI (which you should be offered for ILBC)) showed an even smaller adjacent tumour. Lumpectomy left small scar and some distortion under nipple but hidden by bra. Despite tiny size of tumours I had cancer cells in one sentinel node so all nodes were removed during the op. Margins were clear around tumour site and all other nodes were clear. I take Anastrozole - similar to Letrozole but often prescribed where there is nodal involvement. No side effects except a bit of weight around tummy. Radio was fine, just 5 sessions as I had no risk factors for more g’s per session (high BMI is one risk factor) although I had fatigue for some months. I would personally always go for breast conservation if offered. Could you ask to see another surgeon for a second opinion or just to feel better informed? Ours are all female and strive to avoid mastectomy unless it’s clinically necessary. You need HER status before you make your decision, you need an MRI and I would press for more urgent surgery. This may mean going to a hospital further away but a lumpectomy is normally day surgery. I am 3 years clear Good luck. Hope this is helpful - I knew nothing about ILBC. Now I know more than I ever wanted to
Hello, you poor thing - this is the worst part in a way. I had the same as you (stage 2) but the lump was the size of a billiard ball so I was told I’d have to have a mastectomy. I had a double “for symmetry “. The only thing I would say is that I wish I’d made it clear that I wanted an aesthetic closure. I feel this is very important. I’ve seen photos of American women who’ve had them and they look fine. Feel free to message me if you’d like to talk about this more. Good luck!
I would totally agree with tili. I had a lumpectomy thirteen years ago followed by chemo , radiotherapy and ten years of tamoxifen then letrozole . It was my decision and I could have opted for a mastectomy but I’m so glad I didnt . A year ago I was diagnosed with another cancer which also involved my lymph nodes this time in the same breast . I therefore had no
choice on this occasion and didn’t opt for reconstruction . Im grateful to still be here but the mastectomy for me hasn’t been plain sailing . I still believe I made the right decision to have a lumpectomy first time .Recovery was so much quicker and to be honest apart from a small indentation I had no scars with a year that were visible. It can’t be an easy decision for you . I just knew I wanted to keep my breast if I could . Whatever you decide I hope all goes well and you make a speedy recovery
I am humbled and feel privileged to have had such a generous and informative response. Thank you all.
It’s so useful to hear about what’s happening to others and to hear of real experiences.
I’ve taken on board all the help, info and encouragement you have given me and I have today had a good long chat with the BC nurse; so patient and helpful and didn’t mind at all going over stuff I’d already been told on Friday. She completely got it that I’d been floored on Friday and spent the weekend just getting back up onto my knees ! She also said, as mentioned here, that Lobular is a sneaky little pest that grows in a flatter more undefined way so getting the margins can be a bit tricky, but not to worry, “we’ll get it” !
I now have an MRI booked for 28th December, and will then see the consultant again in the new year to assess the surgery options with more info to hand. I have decided I would like (not sure “like” is the right word but in this crazy cancer world it seems to fit !) to go the lumpectomy + radiotherapy route if everything lines up OK for that option, and keep mastectomy in reserve. Can’t second guess the lymph nodes - will have to see what biopsies in surgery reveal.
I’m also pushing for an earlier op date, but no luck on that one so far. I’ll try again when I see the consultant in the new year.
In the meantime, thanks again to everyone, best wishes to you all for many healthy and happy years ahead, and hoping all goes very well with your surgery Sammie.
Dear bee2, I sympathise with your dilemma having faced it myself. My wait for surgery was 6 months so plenty of thinking time! Macmillan have excellent leaflets on surgery, radiotherapy, and the charity Flat Friends have info about going flat. I weighed up the options, came to a decision I could live with and then talked it through with a nurse/counsellor at my local cancer support centre. I chose mastectomy flat closure and asked the surgeon for a neat curved scar. My choice was based on the following factors: I am diabetic and didn’t want to risk a possible second operation. I have small breasts already disfigured by the biopsy and a deep tumour so my choice was being left with a disfigured breast or no breast. I wasn’t interested in an implant. I didn’t want radiotherapy due to risks of the treatment. On the negative side I was worried that I would feel lopsided and would be traumatised by the result although the surgeon said counselling support would be available if needed. I felt comfortable with my decision. My operation was 21st September. I was discharged the same day and have recovered well. I was not traumatised by the experience (losing my hair was worse), and I do not feel lopsided. In fact I feel perfectly normal. The most important thing is to take time to think about this important decision and to feel clear and calm in your own mind with what you decide. As others have so wisely said the right decision is the one that feels right for you. I wish you all the very best and every success with your treatment. With love from Tulip x
That’s interesting thankyou I’m not a lover of codeine paracetamol and ibuprofen are working great but having morphine at the mo too as my surgery was today and it went so smoothly
Hi bee2
Oh wow now that felt like you was talking about my experience so much the same lobular BC and yes your right it’s sneaky I’m ony second day after recovery so far I believe all the girls it’s just uncomfortable more so but just keeping up with the meds … I would explain your concerns to the Macmillan nurse as they really do understand I wish you all the luck
Sammie
Hi Bee2, lots of good advice here already, I will add my experience in case it is of any help. I was diagnosed in March 2023 with a 2cm grade 2 ER+/PR- ductal carcinoma. It somehow wasn’t made perfectly clear to me that when you have a lumpectomy this is ALWAYS followed by radiotherapy even if the margins and nodes are clear. And anyway, I had no guarantees that the nodes would be clear. So even though I had my reservations about radiotherapy (mainly due to having seen very severe late effects in my mother, and because I am very sporty and worried about my lung capacity being affected) I went for a lumpectomy which I had in April. I was lucky and the margins and nodes were clear. The oncologist did then really push for radiotherapy afterwards, also because they had found a tiny satellite tumour so it was now classed as multi focal. After discussions and some thinking time I decided to have a completion mastectomy instead which I had in June. I recovered really quickly, had no pain at all, and just carried on with life as normal, though I am of course now on hormone treatment. For me the mastectomy was absolutely the right decision. They also found more DCIS in that breast so a good thing it came off. I don’t think I could have made that decision straight away, because if the nodes had not been clear I would have had to accept the need for radiotherapy in which case why lose your whole breast. Though now I almost prefer my flat side over my remaining breast!
so much the same lobular BC and yes your right it’s sneaky I’m ony second day after recovery so far I believe all the girls it’s just uncomfortable more so but just keeping up with the meds … I would explain your concerns to the Macmillan nurse as they really do understand I wish you all the luck