Booked in for lumpectomy and node clearance but I really am beginning to thing i’d rather go for a bilateral MX instead. They only just found (ie nearly missed) my 1cm lump which is already grade3 and there’s some in a lymph node they biopsied. I’m thinking, perhaps there’s another one they have missed which will hit Grade 3 before they find it? If i had the healthy breast off now, at least I’d keep the nodes, and I’d be perfectly happy to wait for reconstruction, if any, until after chemo.
I’ve left a message for my surgeon to call me (although she was adamant that a Lumpectomy was all that was needed) and hope she’ll listen.
Has anyone else had these thoughts prior to first surgery?
I had a WLE last December for a grade 2 ILC. My mum had breast cancer way back in the 80s and underwent a radical mastectomy. She was the first person I knew who had survived cancer. My aunt (mums sister) had died 6 years previously of bc. My sister & I were given annual mammograms from the age of 35 because, although we don’t carry the BRACA genes, they suspect a genetic involvement (a number of other female relatives on mums side have also died/had bc). On diagnosis I was desperate for a mastectomy, but was told that a WLE was being offered and that, because I wanted reconstruction at the same time, I might have to wait 8 weeks or longer for a mastectomy. Not happy with having this disease in me for one minute longer than I had to, I opted for the WLE. On the day of the op, I was still in a quandary as to whether I wanted to go ahead, but did in the end. To cut a long story short, I ended up having to wait 6 weeks from my original op to have another op because they didn’t get clear margins. Was totally gutted that I hadn’t stuck to my guns with my original choice. This has affected me to the point that I am now waiting for an elective bilateral mastectomy. If I could rewind a year, I would def go for the mastectomy. This is only my experience, and you may go ahead with the WLE and not feel the way I did, but my gut instinct is that if you’re considering mastectomy now, you’d be best to go for it. All the best with whatever choice you make. Sending big hugs, Ann x x x
Gosh Jane, that is a difficult one!
To be honest it never occurred to me and I felt happy to go along with what the consultant suggested as he was so confident that it was the right action.
I am hoping that I will be very closely monitored from now on ( although having said that my lump didn’t show up clearly on the mammogram or ultrasound) and will be on hormone therapy which presumably stops it forming in the other breast?
Good luck with your decision…
Mx
im also at the crossroads to go for the bilateral mx , although at the end of the day its up to , nobody else.
i decided before my results i have high grade dcis , but dont want the risk of it comeing back.
my surgeon understood , so if yours insists you dont need be refered to a different doctor.
makes me mad , its such a very dificult time for all of us, we dont need the added pressure of someone telling us something else.
if you dont get the answers you want , theres a complaint help line through to the nhs, i was worried earlier this year and they were wonderful , and i got my hernia asap.
so hang in there you have to stick to whats best for you in the long run, and most of all give you the best possible chance that this wont come back
hope that helps.
feel free to get in touch anytime, us girlies need to stick together
I am not quite in same position. Diagnosed TNBC but because I can’t have radiotherapy then they have advised mastectomy and am going for bilateral due to high risk of BC. Developing in left side. My personal view on this is to get rid of as much tissue as possible is the best way to minimise recurrence. Although recurrence can still happen… I have grade 3 and so am not prepared to take any chances at all. It’s entirely a personal thing but I was in no doubt at all about my surgery which is planned for 28 November.
Whatever you decide will be right for you
Don’t know if this will help/ease your mind etc, but when I was dx in 2010 the lump was huge. I had chemo to shrink first but was told I would need mx as wouldn’t be able to shrink enough. However it did shrink and then my surgeon said I would only need lumpectomy. I was very cynical because at that point had got my head round a mx and having recon etc.
My husband actually asked the surgeon outright - “what would you recommend if it was your wife as we want the best long term survival” and he said he would recommend lumpectomy followed by radiotherapy as it was the same survival outcome.
I think we are all geared to think along the lines of chop it out as quick as possible so it can’t come back, but that isn’t always the case and can sometimes cause more trouble.
As my surgeon said to me, you wouldn’t have all your teeth pulled out just because one needed attention and he could have made money out of my treatment as I had all my treatment privately.
Remember also that once you have had a dx of BC you will always be monitored closely so if anything does appear later down the line it should be picked up very early indeed.
That sounds a positive plan. You then get the best of both worlds. Good luck with the chemo and I hope all your side effects (if you get any) are minimal. Take care, Ann x x x
No, not got a date for surgery yet, still at the planning stage. Went through all my treatment earlier this year, but just can’t settle with having had a lumpectomy, so have been passed on to plastic surgeons to have a bilateral MX. Prob won’t happen for a couple of months, since mine will be classed elective. Now to make the decision of what type of reconstruction to go for. Am definitely swaying toward a DIEP flap, but am gleaning lots of info from the lovely ladies on this site.
Oops! Appear to have replied to a thread that’s disappeared. Ann x x x
Sounds like you have got a very sensible consultant, as you will read from my post yesterday, that is exactly what I had. My lump initially was 50mm and by the time I had finished chemo it had shrunk to just scar tissue so that made removing it incredidly easy. I them had rads as insurance.
As the consultant has said the chemo will also mop up any stray cells anywhere else and also give you a few months breathing space without having to deal with the whole treatment plan and decisions in one go.
You can then make a more informed decision/choice after the chemo has done what it is designed to do.
I’m a bit claustrophobic, so got some diazepam to take just before my MRI from my GP. Made it much easier and I didn’t panic at all. Only thing is that you can’t drive yourself to or from the hospital, but OH was coming with me anyway, so that wasn’t a problem for me. Hope you get the same relief if you choose that route. Take care, Ann x x
Just to say my treatment plan changed twice and am now surgery first and then chemo so in same position. My surgery is next Friday and I can’t wait !! Then chemo after Christmas. They have said that I should only be in a day or two, … Am taking earplugs, sleep mask, melatonin and trusty ipad ?
Just back from op - have been given (by hospital - made by volunteers I think) a long cross body shoulder bag for the drain- seems to work v well . Iphone charger useful plus all Maggie suggested esp the sherbet lemons. Only in one night. Had mxt and 2 lymph nodes out- results in 2 weeks. Good luck to all dec chemo ladies
Many thanks everyone. Have had a really good night - so pleased that surgery is done and at the very least a large chunk of the cancer is out. Have started a new thread ‘lava lamp drains’ on the surgery pages