I’m wrestling with a decision and thought I’d come here to hear other people’s experiences.
In short, at 39 I was diagnosed with DCIS. It was a small (5mm) area and only required a lumpectomy. 3 years later, I’ve just had another lumpectomy and sentinel node biopsy for a similar sized invasive cancer that hadn’t spread to the lymph nodes. However the histology showed the invasive cancer was within another bigger area of DCIS (2cm) and that caused the team to go back to my scans and spot microcalcifications across a 6-8cm area. I have to have another op as the DCIS margins aren’t clear but I’m now torn about what to do about the microcalcifications that no one is happy to ignore. My choices are:
Biopsying microcalcifications before deciding if to leave alone (if benign), try a third lumpectomy with radiotherapy or if mastectomy is necessary (if cancer cells). Pros: more evidence to make a confident decision; Cons: They are hard to reach and my last biopsy was v stressful.
OR
Go straight to a mastectomy (skin and nipple sparing) with reconstruction - pros are I could avoid biopsies and radiotherapy and reduce risk of future ops; cons are I could be overtreated as they may be nothing and the cancer may never return.
I’ve been desperate to keep my breast. However now I’m really confused what to do.
Personally, I had 8 cm of DCIS and I was very happy to go straight to mastectomy with an immediate reconstruction. I was pleasantly surprised with the results and found the operation to be really seamless. I was back in bikinis that summer after the operation that’s how comfortable I felt with everything.
I think if there is a better outcome with a more aggressive approach it will give you more sense of comfort in the long-term plus in some sense it’s nearly easier to do a mastectomy than a lumpectomy, particularly with DCIS which can be extensive.
I was not desperate to keep my breasts so my decision was quite easy for me. I did a double mastectomy. In regards to that, I would like to say I healed fine, have complete movement and am immensely satisfied with my decision. But for you, your cons are different than mine. So if you are comfortable with the risks of future monitoring knowing it would be thorough but knowing nothing is guaranteed either than go for the lumpectomy. But if you’re not and think you would regret keeping your breast if something else would occur, then go for the mastectomy.
I had invasive ductal carcinoma and the large tumour was 33mm and then a few calcifications. I was advised to go straight for mastectomy and node clearance (I found the cancer via the lymph nodes and not the breast as it was barely palpable and was painful so they suspected a cyst on exam).
I always viewed it as it was going to be a deformation I didn’t want anyway so I might as well go the whole hog and told my oncologist not to suggest a lumpectomy. She was so relieved and said she’d never do lumpectomies if she had the choice since she sees many more women come in with recurrence when she performs them.
I couldn’t reconstruct due to radiotherapy being needed after I finish my chemo in 3 weeks. I’ll save rebuilding for next year.
I also have daughters and I’m only 43 and I wanted them to know that you sacrifice vanity and keep your eyes on the prize. I will reconcile my flat closure and make peace with it, partly for my sake but also for them to see how little the superficial matters when you simply want to watch your kids grow up, over and above anything on earth.
I’ve liked not needing to worry about that boob because it’s not there. I would have removed the other one too if they would have let me. At least then it would be easier for them to make both boobs match if and when I reconstruct.
I’ve reached a point where I’m not even sure I want to reconstruct it because I just don’t care that much, despite my top half always being the half I accentuate. It is a reminder of how lucky k am. I hate it but love what it represents and reconstruction is not easy to get my head around after pounding my body to death with chemo and neutropenic sepsis and then radio to come.
Everything I do no is based on ‘no regrets’. I make every choice to optimise my treatment so that I will always know I did everything I could so I don’t beat myself up later.
Thanks for replying and sharing your experience. It’s great to hear you felt pleased and confident with your result, as well as having a seamless operation.
I think the point you make about the extensiveness of DCIS is important because I had mammograms and an MRI yet it was only the operation and subsequent histology that picked up the second lot of DCIS because my breasts are dense. So it is a concern that there may be more lurking undetected in that breast and a mastectomy is the only option to clear that. Very helpful perspective, thank you.
Thank you for sharing Kay, it’s brilliant to hear about your positive healing experience and incredibly helpful to me.
I think your point about future monitoring is important because even with great monitoring to spot the invasive cancer, it’s only the operation and subsequent histology that’s picked up this second load of DCIS, presumably because I’ve dense breasts. This second diagnosis has been much harder to deal with than the first so I’d hate to be back here again in a few years time knowing I could have opted for more robust treatment. Also presumably (as I’m still learning about breast cancer) a recurrence could be the same form (ER+ HER2-) or a harder to treat form of cancer?! I know that mastectomy doesn’t entirely remove the recurrence risk but with hormone therapy I’d hope to give myself the very smallest chance.
Thanks for sharing your experience. I can absolutely understand why you came to the decisions you have about the type of surgery and reconstruction, particularly with the amount of other treatments you’ve had to undergo. I’m sure your daughters are - and will continue to be in the future - really proud of you.
I love your ‘no regrets’ mindset and I know ‘regret’ is a key consideration for me. I’m going to have to go with the best information I have at the time and my choice right now really is,
Do I need extra info through some potentially very difficult biopsy procedures to go forward with no regrets? or
Can I already go forward without regrets because mastectomy is clearly the best option from the existing data (two lots of DCIS and an invasive cancer in the same breast)?
Thanks again for helping me with my thinking and I hope the rest of your treatment goes really well.
I would simply ask the surgeon “what would be your preference and give me the best prognosis?” They HAVE to give patients options and can’t give their opinion unless you ask for it. Back them into a corner. Get them to put their neck on the line in the decision rather than it be on you. They know best but can’t sway you when giving you the initial options. They can however answer the direct question. X
Myicrocalcifications turned out to be two small tumours after the mastectomy and not little blips like they thought. Likewise, my cancer was Grade 3 from Biopsy but then downgraded to Grade 2 when they assessed the whole breast under microscope. Biopsy is just a glimpse and not a full set of facts. That would weigh my decision too. Xx
It’s such a hard decision. I’m meeting with my surgeon the week after next and based on what is known at the moment in my case, it could go either way. I have no idea what I’m hoping for or what to do if I’m given the choice! It’s decision paralysis. I’m planning on asking the surgeon like what @swk1981 recommends and hoping a clear decision materialises!
Thanks @swk1981 - I feel pretty confident my consultants thinks I should have a mastectomy, even though he knows how upsetting that will be for me. I felt it at the last appointment (and my partner agreed). However, I can certainly ask more directly.
It’s really interested to hear your experience with micro-calcifications. I think how small and almost innocuous the name sounds, and the fact I don’t feel like I’m unwell, are the things keeping me from just going for the mastectomy (because hands down it will give me the best data about what is really present in that breast tissue). I feel in a strange way like I’m over-reacting by going for a mastectomy (as I know I’m health anxious) which is perhaps something I should explain to the consultant because they might be able to help counter that and help me over this psychological barrier I have.
@kartoffel I really feel for you because it is such a hard decision and decision paralysis is an excellent description. I hope your consultant helps you find the right way forward.
I was so relieved at my second diagnosis appointment to a) be offered a lumpectomy again and b) not to be asked to make the choice myself between the two ops. That’s why it’s a bit of a shock to now be in exactly that position when I though the surgery stage was over. I’ve had two great results from lumpectomy from an aesthetic and healing perspective (and it sounds like others have experienced this too after mastectomy). However I probably have to face up to the fact that, in my case, neither lumpectomy op has entirely resolved the problem of cancer cells developing/ being present in my breast.
It’s always blown my mind that I felt great when I was riddled with cancer. Now I probably have no cancer left as I only have one more chemo and I look like the poster child for chemo! It’s unfair that it works that way.
It sounds like they’re going to have to take a large area of breast anyway so maybe think about that too as it may be easier for a plastic surgeon to fully reconstruct a breast than to partially or worse, you could end up with two mismatched breasts because I’m not sure they can reconstruct a lumpectomy well. You’ll be losing your nipple with the DCIS anyway.
My surgeon said the hardest part of her job is having to offer an option that is suboptimal. It kills her. There are people on her who have had three ops on one breast because the margins weren’t large enough each time. That has to be worse than a mastectomy and reconstruction. If you don’t need radio then they can do it all at the same time and wake up with matching boobs. X
It’s definitely hard to get our heads round. I had to stop reading about side effects of different treatments because I couldn’t reconcile how I could be probably the healthiest and fittest I’ve ever been and now be at risk of all these other effects on my body as a result of treating a few millimetres or centimetres of disease.
I could tell my consultant felt the same and yours about the suboptimal options because he was clear about how flat a lumpectomy would make the upper out quadrant of my breast if another lumpectomy was done. I’ve written off that as an option in my mind completely. I just drew myself a decision tree and I’ve been clinging onto the hope that biopsying the micro-calicifications could result in them being benign and so all I’d need is a op to clear one small margin. But I think I’m kidding myself:
they are on the edge of the DCIS
my doctor has said explicitly he doesn’t like the look of them and
the last lumpectomy was tricky for the surgeons because of the location so getting that clearance is not guaranteed.
So I think I have my decision. Thank you so much for talking this through this with me. X
Of course! If you do a mastectomy also know that reconstruction can be pretty good. Sometimes even better than the originals. It was for me at least. You won’t have much if not any feeling and that’s tough, but then you also have the peace of knowing that the chances of that breast making cancer again is very, very low. For me that has done quite a bit for my emotional health.
Hi
I’m not an expert but being in a similar position I would wait until you get biopsy results. It’s a tough shout and harder to comprehend but stay positive and keep “driving through the darkness” daylight will appear💕
It certainly feels like driving in the darkness! My problem is I haven’t yet had the biopsies. I can’t have them for 6-8 weeks because the swelling from my last op needs to go down before they can be done. The last biopsy was incredibly stressful as the location is really hard to access near my chest wall. I’m not sure I can put myself through that when every biopsy I’ve had to date has come back as cancer. X
You think the same as me. Even my 91 year old Dad thinks I’m strange. He couldn’t bear to see me at all with no hair during chemo, and even 10 weeks on from final chemo with baby fluff he finds it difficult to see me. But at this stage I’ve stopped wearing a hat indoors at home for my own comfort, nobody else’s. I wear a lightweight chemo cap with thin coloured scarf when out and about, or an old straw hat in the garden. All this is for my own comfort.
After my smx last September, chemo/radio and now bisphosphonates and AI I will take whatever the NHS can throw at me. The year before my diagnosis my sister in law died of cancer. Five months later I witnessed my mum die over 6 weeks of cancer, both had chosen not to be treated when things were flagged. If I have a recurrence I will not regret or feel guilty that I haven’t done everything I could x
It’s so difficult. Im 37 and pushed hard for the surgery I ended up having. I had Grade D dense breasts and the mammogram showed all okay!!! Turned out I had a primary 5.5cm triple negative tumour with further satellite sites taking it to 8.5cm, which had already spread to my lymph nodes. I was a 30JJ cup, and knew being so lopsided would put me in a lot of pain, and they were point blank refusing reconstruction, and wouldnt offer nipple sparing. So I pushed for a double goldilocks mastectomy (with full node clearance). I have more treatment to go (just finished chemo!), but im actually quite pleased with my new little mounds!
It is a difficult decision, but ask all the questions that you keep thinking of. Like others have said, back them into a corner with options and answers, and if you decide you really want one option, then go guns blazing! Its your body!! Might be worth seeing if your local Maggies, breast charity, or if in London, Future Dreams, are doing a show and tell anytime soon, so you can take a look and ask more questions?
