Recently diagnosed, IDC, fairly big 70mm mass, Grade 2, Er+, HER - with lymph node involvement.
I should have a treatment plan shortly and surgery is looking like the first treatment.
My initial thought was " get them both off!" , but now I’m looking at all options, and they all seem to be awful!
Can anyone with a similar diagnosis share some of their pros and cons?
At the moment I’m leaning towards a single mastectomy without reconstruction.
But what I really want is to rewind 4 weeks and have the scans come back clear
My diagnosis was bilateral, with a 27mm lump on one side & 10mm on the other ER highly +ve, HER-ve. I also had lymph node involvement. Do you know for sure that you will need a mastectomy and not a lumpectomy? I believe that it depends on lump size along with breast size. I had two lumpectomies. From the ultrasound, there only seemed to be one affected lymph node, so my surgeon agreed to take just the sentinel node on the left side, and a targeted approach on the right side (sentinel plus the three or four after the sentinel). However, my lymph nodes were apparently a bit clumped together, so he ended up taking out twelve, four or which had cancer. So, now I have to have more surgery to do a full clearance.
My lumpectomy scars have healed to the point that they are not really noticeable (January surgery) and the size hasn’t really changed. But I obviously cannot offer any information about mastectomy.
What I will say is that the time between diagnosis and getting a plan is so stressful, and once the plan is in place, you should feel a bit more “in control” of the situation. There’s no denying that this is life-changing for everyone who has to face it, and initially I kept wishing, like you, that I could turn the clock back to pre-diagnosis. But, all we can do now, is keep looking forwards, and trying to stay positive (you won’t always feel positive, and we have to allow ourselves down days and tears!).
One day at a time is my mantra. I’ve just finished my chemo, and my next step is the additional surgery, followed by radiotherapy.
Very best wishes to you - and stay on the forum, it’s helped me so much x
Hi @preferablywithfood, I am sorry to hear of your diagnosis. Its a shock and way too much to take in but you’ve come to the right place for support. You asked for pros and cons of surgery options. I had an elective mastectomy flat closure and these were what I considered to be the pros…1 all tissue gone so no risk of further ops if clear margins not achieved. 2 preferred to have no breast than a deformed one. 3 simple op that doesnt last as long as ops involving reconstruction. 4 easier to fit a prosthesis onto a flat surface and to get one to match size of remaining breast 5 i was able to avoid radiotherapy (this is not a given but was in my case as no lymph node. Involvement. Hope you will hear from others who chose different options to help you. X
Thank you! Your reasons are exactly the same as mine.
I believe all options leave you completely or partially numb? And in that case I’d rather be numb because of no breast than numb with a breast that isn’t really mine anyway.
I did think about DIEP but … that procedure and recovery time! And again, numbness.
@teedee , thank you. No a mastectomy isn’t a given, but if I had a lumpectomy I’m concerned about further procedures if the margins weren’t clear and as it’s such a big lump, what my remaining breast would look and feel like ( plus the possibility of further revisions)
Urgh.
I was diagnosed at the end of May - I’m quite calm and level headed, so I’ve had a few wobbles but on the whole I’m a bit " tits out, shoulders back and get on with it".
My worst day by far was the initial GP appointment when we both knew it was cancer and I was referred for further screening.
My CT scan showed an enlarged lymph nodes in my groin so that needed a biopsy too. At that appointment I was lying there, surrounded by machines, screens and radiologists, wondering how on earth this had happened to me.
I’ve been reading this forum since my diagnosis - you’re all so great and I’ve learned an awful lot. It’s already been a big help.
@preferablywithfood Im sorry to see you here, but im glad that you are finding the forums helpful.
I had the same diagnosis as you in April last year. This came after i found a lump inder my arm - a 5cm lymph node, and the GP found a 4cm breast lump Because of the size of the node, known to be cancer I had chemotherapy first which sharnk the node to 1.5cm but had no effect on the breast lump.
The surgeon said a lumpectomy would be sufficient. I asked if a mastectomy would be ‘safer’ and he said he was confident he could get clear margins. The incision just went into the top of the areola and is 2-3inches long. As its healed, which it did very well with no pain, a dip appeared which I didn’t like. 6 months after surgery this has started to fill in a bit. There is possibly a slight reduction in nipple sensation but I’m not totally sure.
I had a full axillary clearance of lymph nodes - 8 taken, 1 positive. I had a drain for 7 days after and got an infection which needed antibiotics. I had quite a bit of leaking around the drain and after it was removed. District nurses came to do the dressings. I found this part of the operation more painful but managed with paracetamol.
I had and have nerve ‘damage’ to the upper arm and armpit. Initially there was numbness all over, sort of where a blood pressure cuff goes and all down the armpit. I also had some shooting pains which were quite unpleasant. Gradually the numb areas got less and I had skin hypersensitivity on the back of my arm particularly. I found using a pillow under the arm in bed, and on the sofa, very helpful. I also wore a bra, given to me by breast care nurses, and a crop top in bed, very helpful for a couple of months or so.
Now I get the occasional twinge but dont notice it much at all. Some areas are still numb.
ER/PR +ve Her2 -ve 4.8 cm upper lump + at least 1node involved oncotype 19 age 77. I’ve had surgery plus revision to get clear margins and breast reduction fro F to C/D. and radiotherapy x16. It’s not an easy decision but it was my choice and following guidance and reading. Yes it does make buying bras difficult at the moment but I hope to have the other breast reduced in the future. I found the surgery fine to cope with and the radiotherapy was less difficult than I expected as I am a rather stiff old lady!. No choice is wrong if it is your choice but maybe be guided by the staff they treat so many of. Good luck
Just wanted to say that your user name made me laugh, you sound like my kind of girl and I hope this frigging nonsense gets sorted out quickly and to your (relative) satisfaction.
Lots of great comments and advice here. I just want to say to @preferablywithfood that it is not a given that surgery will leave you numb.
I have had a single, left side mastectomy (2020) and a right side lumpectomy (2023). I would say that after both operations I had some numbness, but I now have full sensation on both sides.
I opted to stay flat after my mastectomy and don’t regret it. I decided to have the lumpectomy on my right side, but would have asked for a mastectomy if they didn’t get clear margins first time round.
Just got home from a few drinks with my husband ( who is being an absolute superstar, but I’m very worried about him - he’s a “helper” who won’t be able to be much help).
Well now I don’t know - a straightforward lumpectomy would be the best possible outcome I think.
I think I ought to stop thinking 2 steps ahead and wait until I get my next appointment.
He did say today that I’d been incredibly strong. I told him that there’s a good chance that I’d completely fall apart when it’s all over.
It’s so awful. Thank you so much to everyone who replied, I really do appreciate it.
Hi i had an LD with implant reconstruction left side in 2004 and wanted both removed. Ive had 21 years and only just arrived back in this place. Whatever the options its worth a try. I thought just get rid of them both but actually it really wasnt necessary. The cancer is back, yes but still in the same side. Just think it through very carefully. I had a rash decision and am so glad the surgeon talked me out of a double mastectomy.
Hello @preferablywithfood
I was diagnosed 3 years ago with what was thought to be two tumours, the biggest being 3.5cm but turned out to be 5.5cm, not dissimilar to you. Because of the size, position (and number for me) I was offered a mastectomy with or without reconstruction - no lumpectomy option. To be honest, my reaction was just like yours, take them both off but I was told if I wanted a second mastectomy, I would need to have that at a later date. Three years on, I have just completed full treatment, and just want my life back, so not keen to go down that road. I would prefer though not to have one breast. None or two are just easier.
Why did I personally chose mastectomy with no reconstruction:
simpler, shorter surgery. I was in and out same day. My surgeon didn’t use drains, and I was up doing little jobs and in the shower next day washing my hair (albeit not brilliantly but good enough).
quicker recovery. No having to take skin from other areas like my abdomen, making it harder and longer to recover, risk of infection…
I didn’t know for sure if I needed radiotherapy but in the end I did, and as I understand it, this can affect implants, make them harden, potentially need further surgeries to change them.
I have never regretted my choice. Sometimes I wear a crop top with no prosthesis on that side, sometimes I wear the prosthesis… depends where I’m going. My surgeon did gently try to encourage me towards reconstruction but I knew I wasn’t going there and have never given reconstruction a second thought since.
The underside of my upper arm does feel numb but nothing that stops me doing anything. Six weeks after mastectomy I had a full lymph clearance when my sentinal node came back positive for cancer. My arm may feel numb or more numb because of the second operation in the same area.
I think all the options feel awful to you because how do you chose which option is best when you don’t want any of them’ You want another option of going back to the life you had and make this all go away’. Sadly that is not one of the options so it’s how to get past that brick wall.
Could it help instead to ask yourself, which option would be worst, because by process of elimination, the other is the better?
Another one I have tried in the past is, when I am through all my treatment, which will I find easier to manage/which can I live with better/how will I feel with one breast/is it possible I could regret this choice… whatever works for you…
Although sometimes I think we need to scream, ‘mourn’ our old carefree life and take whatever time we need to get our heads together first…
Good luck.
Big big hugs
Laura
I feel exactly the same as you & am horrified by my surgery options. (A single mastectomy) - no immediate reconstruction. Which I explained to my surgeon and BCN will absolutely destroy me. Not helped by the fact that I’m 39 at the end of the month and that’s the date they are pushing for.
One of my biggest frustrations is the constant “we / they can reconstruct”. From everything I’ve seen & read it doesn’t seem anything close to a reconstruction. (no nipple, I mean come on!) I’m also not sold on the idea that I then have to have fat removed from elsewhere (of which I don’t have much at present) to rebuild a breast.
I said to my team that mentally it will destroy me & they asked me to explain why. Apparently (through snot, sobs and tears) i was articulate.
I’m angry and feel it’s absolutely barbaric that even after 6 months of chemotherapy that has taken my hair, my eyebrows and eyelashes, my periods and fertility, my nails etc etc) my only option is to lose my breast. There’s no feeling like it. I feel and believe we all deserve more.
(i know and understand that I should be grateful & of course to an extent I am but it’s overridden by the unfairness of it all.)
Has anyone / does anyone know of individuals that have rejected this option? I’m curious.
I remember having a tooth removed with a local anaesthetic and coming out of the dental surgery telling everyone how “medieval” the whole experience was.
This feels the same!
I’m beyond grateful that these days it’s not just " breast cancer" with a one size fits all treatment option that may or may not work, but at the same time it feels like we haven’t really moved beyond chopping bits off.
Thank you to everyone who has shared their stories - I hope you’re all as well as you can be now!
My diagnosis was similar. Larger lump, triple positive.
I went for a mastectomy with diep flap reconstruction. I was terrified of the procedure (& recovery) as well as end result.
Surgery & recovery was much less traumatic than i imagined. I was back to work within 6 weeks.
Although its taken a while to gwt used to my new body i am happy with my reconstruction. I havent told many people at all about my op & you really wouldnt be able to tell. I wear swimming costumes, low cut tops etc & i feel confident in them.
Being honest, youre in a shit situation with shit options but theyre better than you think.
Whatever you choose will be right for you.
Good luck x
In clothes it doesnt look any different & you wouldnt know. They made it slightly bigger as it shrinks with radiotherapy.
It definitely feels ‘stiffer’ than my real one. Not hard, stiffer & thats just to do with a different type of tissue.
I had to lose my nipple & i was devastated but im 2 years on & my scars are really fading (breast & stomach). I had some lymphnodes removed too & surgeon was able to avoid another scar under my armpit as they went in from the front during mastectomy.
I went back to plastic surgeon for a review after 12 months & was offered all sorts of further treatment; nipple tattoo, make a nipple from tissue, liposuction to inject the top of my real breast to make it look fuller & identical to the diep breast. I declined it all as im really so happy with the first surgery.
I was TERRIFIED of this surgery & how id look (i had 6 months of hypnotherapy & a lot of beta blockers to get through it!) But i am now so grateful i went through with it & with how i look now. Im never going to be a catwalk model but im cancer free & happy.
Youre going to get through this whatever you decide x
Thank you, I’m absolutely terrified too. Waking up with night terrors. It’s the nipple that gets me. I’ve always really cared for my body and still qm unable to come to terms with this. X
If youre terrified definitely speak to your surgical team. Mine were fantastic. The anesthesiologist took time out to meet me at my pre-op & let me ask any questions. She also explained exactly what to expect. Spoke to the surgeon too who recommended medication before i went to theatre so i didnt remember anything. This also helped. They will send you to a clinical psychologist too which may help.
My surgeon was very up front when i told her i was so scared. She reassured me that noone has died on her table whilst having breast surgery. She also reassured me that compared to other surgeries its lower risk because its all in the fat layers and not working on any of my organs. That kind of made sense to me and gave me a bit of reassurance.
I lost my nipple as the cancer had spread to my skin. You can have nipple saving mastectomies too.
If youre considering diep i suggest you write down all your questions and ask at the next appointment. My surgeon was also able to show me before & after picutres of other patients too. Ask if you can see some.
Its a huge decision and noone knows what to do for the best. I was “lucky” that i spoke to someone i knew who had been through it. Im sure Breast Cancer Now have a telephone service where they will let you talk to someone who has gone through the same. Might be worth considering that too.
Because of the size of the node, known to be cancer I had chemotherapy first which sharnk the node to 1.5cm but had no effect on the breast lump.