I was diagnosed with DCIS and Invasive Ductal Carcinoma in the right breast (mixed) February of this year. It is recommended that I have a mx
After many years of attending breast clinics (Fibroadenoma, biopsies, FNA, pre-menopausal lumps and generally very lumpy breasts,) I have decided that I can no longer cope with the threat of a cancer diagnosis in the other breast or indeed cope with any more further investigations as above.
I am seeing my oncologist on Tues and would like before then to ask others what responses they have had to a request to remove a ‘healthy breast’.
I am currently on EC regime, then mx,with ANC then rads followed by hormone therapy. ER8/8.
I had a double mx with immediate recon using expanders and am having delayed DIEP recon. As I was only 33 at diagnosis last year I wanted to reduce the risk of the cancer coming back in my other breast and having to go through treatment again. And I was also keen to keep symmetry. I am really happy with my expanders - they have given me great shape - but they are a bit solid so I am looking forward to my DIEP surgery.
I actually saw a few surgeons (due to long, drawn out misdiagnosis with original surgeon which was not handled well when he finally gave me my diagnosis - long story) before I settled with one I was happy with and all supported my decision apart from one who recommended I concentrate on the cancer side first and then worry about the other side after I’d finished rads. I decided not to go down this route - but it does make sense as I have met quite a few women who’ve had awful seromas and infections etc and I would have hated to have had any complications with my healthy breast op to have held up treatment on my cancer side. But luckily I didn’t have any complications.
I also had chemo first and the good thing about that is that it gives you time to make the decision right for you and to discuss it with your consultants.
Good luck with your decision and I hope they support you.
I had IBC in one breast and had chemo before surgery. During that time I decided that I wanted both breasts removed, I had a family history of BC and although it was proved to be bad luck not genetic my surgeon agreed with me that to have both off would be a sensible idea. I also made the decision to stay flat with no recon. This all happened 4 years ago and I have no regrets. However I should add that I am in my 60’s and have been married for 46 years so body shape wasn’t as I important to me as I appreciate it is with most ladies. The way I dress has changed a bit with tops that camouflage but otherwise I rarely give it a thought.
My doctor would not consider this as he said no symptoms in other breast…even though I have ILC and it is hard to find…now at Stage 3 already and only just diagnosed…
I would feel happier not being lop sided…but I will be in 3 days time.
I have had quite a bit of difficulty persuading the various medics to let me have a double mx. Ts a bit dawn out so will give you a potted history.
Dx march 2010 at age 38 slight family history- mat grandma and mat cousin. Wanted 2x mx at start was alked out of it. Had a mammoplasty and planned to have symmetry surgery after a couple of years. Planning started for symmetry surgery, so decided to check into genetics. All medic thought it highly unlikely as mam ok and older sister ok and no BC on dads side. BUT turns out pat grandma had ovarian ca at 50 and died. ( rubbish male dominated side of the family so no one mentioned this r even appeared to remember) .so was genetically tested- counsellor said my ca is most likely genetic whether brca or not. Tested Neg. went back to discuss risks and was told still highly likely to be genetic so still wanted double mx and now also hysterectomy.
My own surgeon took three apps ( and 6 months ) before agreeing to it. For him the genetics was not enough it was down to my mental, emotional state. My second opinion surgeon ( u have to have one ) would not do it at all and considered it mutilation- even used that word, to remove the healthy breast. My gynea surgeon however was absolutely fine about doing the hysterectomy. I do have the back up of my psychologist and BCN so that helps. But I do think the fact that they know me so well helps. The other hosp simply looked ta the figures and stats and said no. Yet I know patients who have been treated there from the start who are getting double mx with less apparent risk than me.
I am having my hysterectomy in a couple of weeks. Mx 1 in August and mx 2 in the new year. It’s a bit more complicated than I would like due to work and kids etc,but hopefully it will all get done. If I wasn’t opting for recon it would be much simpler- and there are times when I do think I might just change my mind and have no recon at all, just to get it over with.
Sorry ths is such a long post. My main piece of advice is to be surprised by nothing. Be prepared to argue, or need back up if you really want it. All surgeons are different and it s completely up to them whether they agree to t or not. Some will look for an excuse not to, others need less persuading. Ultimately they do not want to be sued if you change your mind or are not happy with the results if there is no clear medical reason for you to have it.
I did have a double mx. I had ILC and lymph node involvement on one side. MRI showed nothing in the other breast but my ILC had been very difficult to detect until very large.
I knew I wanted a double mx but the breast care nurse said I’d probably have to have a psychogical assessment. I had a meeting with the surgeon and the Onc and made my case. The end result was their agreement without a psychological assessment.
The main thing to consider is whether or not you want a reconstruction. I didn’t and so this made things much easier. Recon is a long operation especially for two breasts.
The case I made was:
i had carried out regular breast checks and had not been able to feel anything. Then suddenly I had a huge thickening (brought on by being given HRT)
I had already undergone very major surgery for a gynae/bowel problems and I said that I didn’t want to keep having surgery. I wanted both breasts removed in one go.
I said that they were unlikely to offer me a breast MRI every year and they agreed.
I think though what might have swung it (pardon the pun) was the size of my breasts. I was a 38 FF. The surgeon said to me on the day I went for the double mx that it was a good decision as I would have found it difficult to be so lop-sided.
My surgeon was lovely and said that I could change my mind at any time even on the day and say I only wanted one removed.
I had the double mx and have never regretted it. It is though a very individual decision and also everyone has different circumstances which might be why some surgeons are more reluctant.
I was told very clearly that the risk was with the breast that had the cancer in and I had to make clear that I understood that before they agreed.
I hope this helps and good luck with it all.
Elinda x
Hi Elinda
That is same as me ILC, advanced when found that appeared really suddenly just like you (and I am not taking any hormone drugs at all, always avoided them). I don´t want to live with the fear of that happening in my other breast (although MRI shows it is clear albeit with some benign tissue changes) but surgeon will not even consider doing both. Yet everyone tells me gravely how serious my current cancer is!
I think I was lucky to have a surgeon that doesn’t always follow the rules. Even for him I don’t think it was normal practice.
The risk of course is with the breast you’ve had removed (or will be having removed). I don’t know what to suggest. I did do some research to find out the likelihood of developing cancer in the other breast - sorry I haven’t kept it - but that could be a starting point.
If you could afford to pay for it privately you might find a willing surgeon.
Probably best thing is to speak to the helpline. That’s what I did before I pursued anything.
The main thing is to know what checks they will carry out on the healthy breast so you can feel reassured and have some peace of mind.
Thanks all for replying.
My main reasons for requesting a double Mx is the difficulty in diagnosing ILC (lobular). About 8 years before my current diagnosis, I had a mammo/ultrasound/and core biopsies in this right breast because the doc ‘didn’t like the look of it’ It was then declared normal breast tissue, even though one of the glands was up at that time.
I must stress that I hadn’t even gone about this breast but the other that had a lump that would go up and down with my period.
The right breast biopsy was on the outer quadrant, but the present mass is at the 12 o clock position.
The team are going to review all notes from that visit 8 or so years ago.
My point is this; I wonder if it was present all the time in that right breast but simply not detected?
And that makes me worry about the remaining breast (although it has always been less of a problem with general ‘lumpyness’)
It could be the case that it is ‘hiding’ there too. Although I have had an MRI now and is clear.
I just don’t trust that ‘lobular’ cancer and current screening practices to detect it. And that is why I want a prophylactic breast removal.
I am same as you but MRI normally DOES find lobular cancer, however it is a lurker that seems to start as a scattergun…so I really understand how you feel…
But they refused me a prophylatic removal on the other side.
Hi wintersocks.
Im soo pleased you’ve started this post.
Once my chemo has finished Im hoping to have a double skin saving mx with implants. Im lucky with my surgeon being an oncoplastic surgeon so she offered to do this but has left me to decide what i want to do once chemo has done.
Its been on my mind a lot lately and i can’t wait to see her again.
Her work is amazing. after my wle i haven’t even got a scar on my boob. the lump was at 12o’clock too. she did the whole thing from around the edge of my nipple. too much info now i know sorry.
Just don’t want to go through this ever again.
I’ve got to have lymph clearance as well. are you having this too x x please let me know how you get on.
oohhh now you have me thinking about surgery…
I only have a lump in my left boob and no family history. Have people been advised to have both off or has it been your decision?
My decision. Had to have a mastectomy on my left hand side anyway and a strong family history (but not a BRCA carrier). I don’t think you’ll find any consultants who would recommend you had a double mx in your position - but if you felt strongly about it then you have time to discuss it with your onc and surgeon.
Thanks - i know one surgeon broached it with me at diagnosis but its not something i considered again… not til i saw this…
I want a different surgeon to do my op…not the one that gave me my diagnosis…
I am going to ask my onc tomorrow her opinion about this. My main concern is that it is a lobular cancer I have and my understanding is it is difficult to detect. Also there is a heightened risk of developing lobular in the other breast having had it once. Therefore a bilateral mx maybe a good idea.