any one else come up against this?

Hi,

I had diagnosis 11 years ago left breast, lumpectomy, chemo, rads,

November last year right breast, mx, chemo, rads which I finish next Wednesday,

I asked my surgeon to do a bilateral mx but he refused, saying I could have mx to left breast at a later date,
now my onc has said to me no need as my left breast is healthy at the moment, and that I had been “very unlucky” to have developed a second primary at 44 years of age!!!

I know my left breast is healthy but I still want it removed, it looks as if I am even going to have to fight for that now, as anyone else come up against this?

any advice would be gratefully received love Liz xxx

Hiya,

I’ve had two primaries in the last ten years - very similar to you, except mine were both very early stage and I’ve not needed any chemo at all.

The first time was left breast high grade dcis for which I had WLE followed by shaving of the margins and then 25 radiotherapies. That was in 2001.

Then last year, I was diagnosed with Paget’s of my left breast and because I’d already had the first primary (DCIS), they recommended mastectomy, which I had. They said I could have immediate or delayed reconstruction. So far, I’ve not wanted reconstruction, but at the time of the mx last year, I asked about bi-lateral mastectomy, in view of the two primaries in 10yrs in the same breast. My surgeon said that because both cancers had only been very early stage, he saw no reason for mx of my right breast. He did say though, that if I “made enough noise” and also if I ever decided to have implant reconstruction, he would consider right breast mastectomy at the same time as reconstruction of my left breast, and so would reconstruct both sides.

So, in effect, my surgeon could be persuaded to do a right mastectomy of my healthy breast, and then reconstruct both sides at the same time. However, as yet I’m ok enough (most of the time anyway!) without feeling the need for reconstruction. If I did have it done, I’d probably opt for it next year - certainly not this year now, as I’ve a special holiday booked.

So… I reckon that if my surgeon is open to the idea of mx for my healthy breast followed by bi-lateral reconstruction, then yours could be seen as been less flexible than mine. I don’t know where you live, and whether the “postcode lottery” might come into play in your area - I live in Yorkshire and so far the oncology budget doesnt seem too affected here, if you know what I mean. My bcn says that in this region, ops like reconstruction are seen as “oncoplastic” operations rather than as a “cosmetic operation” that I’ve heard them termed as in other parts of the country.

I really hope you don’t have to fight too hard to get the second mx - it sounds to me as if the piece of mind it’d bring you is just what you need. I really don’t know what to suggest in the way of advice to you, bu would you perhaps be able to be referred to another surgeon for a second opinion?

Good luck, and please let us know how you go on!!

Luv and hugs, Shelley xxxx

Hi Shelley,

yes it sounds pretty much like money comes into all of this doesnt it?

when I asked for the bi-lateral surgery and was refused it my surgeon stated he would be willing to perform the surgery at a later date and do an immediate re-construction both sides,

I dont want a re-construction and this is what seems to be causing the problem,

what is the big thing about having mx and not wanting re-construction,

I will keep posting as I have more news and thanks for sharing your experience

all the best Liz xx

Hi again Liz!

Yep, you’re right, cos thinking about it, my surgeon seemed only to be saying yes to the idea of right breast mastectomy if I chose to have reconstrution to left side, in which case he’d remove right breast and do bi-lateral reconstructions.

Wonder what it is with them, that they’re happy enough to do reconstructions, but when it comes to removing a healthy breast after two primaries on the “other side”, then they want us to make a huge noise first, in order to convince them it’s a good idea!

I know the reconstructions can look absolutely brilliant, but I don’t think it’s ever going to be what I want. I’m 50, and I’ve got visions of me in years to come as an old lady on a hospital ward being cared for some small illness, and doctors and nurses around me saying to each other “wouldn’t you think she’d have gone for reconstruction…?” I guess in years to come, the op will become even more prevalent than it already is, and I may be one of only a few people with a mastectomy scar and no reconstruction - but I reckon I can live with that!

So Liz, please continue posting when you’ve more news - good luck, and pm me too if you want to!

Take care! Shelley xxxx

hi shelley,

I have had a primary in each breast unlike yourself where only one breast was affected,

I will keep posting and let you know how I get on,

best wishes Liz xxx

Liz, sorry I’d not fully taken on board what you were saying, n have re-read your original post.

I can fully understand where you’re coming from - I’d be just the same as you and would be requesting the second mastectomy, if I was you with having had the two primaries in separate breasts.

I guess there are lots of people who we don’t hear about, who have a second primary breast cancer on the other side and don’t have any future recurrences - but I think I’d want the second mastectomy too, just “to be on the safe side.”

All the best for getting what you want and need… take care too, and please post again when you have some news!

Lots of love,
Shelley xxxx

Hi Liz,
I know exactly how you feel, had bilteral mx in March, one was prophylactic. My surgeon agreed to do mine after a long chat, as I’d researched it all with risk factors (have family hx but not the BRCA genes) and had lifestyle reasons too (lots of outdoor stuff) and didn’t want recon or to wear breast forms all the time. He said he wouldn’t normally agree to it, but because I’d researched it extensively he agreed to do it. I’ve got no regrets, especially since there turned out to be lobular hyperplasia in the healthy breast - I’d still have been happy if it had been clear though.

My friend Kulakatz on here was refused, there’s a thread on here somewhere but I can’t find it. I think it was in Feb time this year. She’s been told she can have the second mx if she feels the same in a year’s time.

I’d have thought your case is pretty compelling, as long as you’ve really thought it through and are sure you’re making the right decision for you.
You could ask for a second opinion from another surgeon, which you’re entitled to do. If you do this, it might help to speak to your bcn first and to have a list of your reasons with you. The bcn should be able to help and advise. If this doesn’t work, there’s PALS at the hospital who could also advise you.
Good luck
xx

hi bubbletrouble,

do you know what I am getting fed up now, just seen my onc and he has said,

“finish rads, follow up 3 months with him, next follow up 3 months after that with surgeon, discuss further surgery with him then”, in the meantime presumably I will have the 12 month mammogram when its due in November/December providing I havent already had the surgery to remove the healthy breast,

the thing that bugged me originally and still bugs me now is why not just do the bi-lateral in the beginning all I keep hearing is re-construction, like yourself I dont want that I just want to get all this over with and get on with living again,

sorry if I sound ungrateful I am far from it, but they do seem to make more work and cause more heartache in the long run,

I mean I dont think I would feel any different with both of them gone as I do with one gone physically, but mentally I would be in a much better place, now they are telling me I need to see a shrink, because I am depressed, I havent mentioned feeling depressed, the only thing that is making me go mad is them not doing as I asked in the very beginning, rant over lol

on a more serious note, do they realise that to a point I feel as if I am gambling with my life, 2 primaries, one in each breast in less than 10 years, and still only 45, with 3 young children to look after,

give me a break guys, someone needs to do something about how things are decided and who decides.

love and best wishes Liz xxx

hi Elizabethtracey

can you ask him to do the mastectomy and have a delayed reconstruction but just never go back for the recon or say you prefer to use prostethis… if hes willing to do it then he should be willing to do it how you would like it… no recon is an option… he may want you to discuss it with a psychologist before proceeding but this is common practice in many places before having prophylactic surgery… i had to see one too… however they cant exclude you from the surgery based on your preferences.

i have bilateral BC too at 37 and 40 and based on my family history was tested for brca mutations and found to have BRCA2 i had asked for bilat mx at time of 2nd diagnosis but they didnt think i needed it as didnt know i had gene at that time.

now my plastic surgeon is pushing for the MX but im not in such a hurry but planning to do it next year.

and if your not happy with your surgeon you can request a second opinion.

Hi cheers Lulu34, I too had the braca1 and 2 genetic testing and was negative,

I will keep pushing for preventative surgery, as I feel very, very strong about having it done,

as for my surgeon, I have found out (since having my mx) that he had been under investigation for leaving tissue behind, something to do with giving ladies a cleavage when performing the reconstruction,

several ladies have been re-called to have corrective surgery, he wasnt following the recommended guidlines for the surgery !!! scary or what?

OMG the more I think about it all the more fed up I am getting why isnt anything just straight forward lol

best wishes Liz xxx

OMG Liz def ask for a second opinion!

Lx

hi Lulu,

I will definately not be having the same surgeon to perform any further surgery on me.

I reckon there are a lot of ladies that will not be willing to let him perform surgery on them,

my oh said straight away, no chance, what the hell is he playing at!!!

makes you wonder doesnt it?

I’m with Lulu, get another surgeon! It’s your body Liz, and I do hope you get what you’re asking for and feel you need. Big hugs xx

I have (I hope) one healthy breast, but after having a scare three years ago and having to go through the whole situation then, core biopsies, lumpectomy waiting for results to find out that it was benign. Then to have to go through the whole thing again this year but this time finding out I have Cancer, plus family history is a bridge to far in my opinion. My Consultant, doesnt think its necessary to do a bilateral, but she has said its my choice and she will do whatever I need to have peace of mind.

I am going back on Friday for another lumpectomy to see if they can get clear margins. she is doing this to buy me some time, so I dont just rush into the bilateral. I am very confused, half of me wants it done, but the other half of me is terrified. I have a big problem with bleeding after surgery and I mean BLEEDING, nearly died having my son, so that is something that I am terrified of.

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