67.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Preventative mx - reluctant surgeon

16 REPLIES 16
booksandwine
Member

Re: Preventative mx - reluctant surgeon

Wax. Re mammogram and looking out for reoccurrence I'm not sure where you live but I've signed up for a breastcancercare talk on signs and reoccurrence in london later this year if too far I am sure you could get noted etc.
Mysticalmoo
Member

Re: Preventative mx - reluctant surgeon

Wax2014,

Yes you've made perfect sense...

Those questions are on my list too. I have no idea what the future screening plans are as I was cleared by mammogram and ultrasound yet had a 9cm mass! Will post what I find out...
wax2014
Member

Re: Preventative mx - reluctant surgeon

Hi ladies..I am in a similar position having a large lobular cancer in my left breast at 50mm.So far I have had a mx and reconstruction and am doing chemo,rads etc. My kneejerk reaction was to have both off as it was only noticed by a slight change on my nipple direction, no lump and only showed up completely on MRI. My surgeon was the same ..deal with one first then we will discuss what to to with the other when treatment is over. I must say as movement was difficult after the mx ..muscle pain etc I was glad I had one side done first as I would have been fully reliant on someone to even help me in and out of bed and to the loo in the first weeks following surgery. I am now not sure what to do with my other breast it needs lifting for sure but my question now is whats the follow up proceedure? Cant have a mamogram on reconstructed breast so how will i know if it comes back ..being lobular its sneaky and I'm sure they wont offer yearly MRI's too expensive. So do i keep my other breast knowing that at least if I get it in that one it has a chance of being picked up or have it off and have no proper follow up on either ?? Hope this makes sence ...
Mysticalmoo
Member

Re: Preventative mx - reluctant surgeon

Booksandwine,

Thanks for your comment. It is so reassuring to know that I'm not asking for something preposterous and that my feelings are not completely barmy. Women with BC understand how important it is to reduce the worry and chance if ever having to journey down this path again.

I feel exactly as you do that I would rather be symmetrical, losing one feels more traumatic than both and then reconstructing both. I am a 34DD and am sure that a bilateral reconstruction will be cosmetically better in the long run than trying to match...

Take care
Rebecca
Mysticalmoo
Member

Re: Preventative mx - reluctant surgeon

Hi. Sorry I have not replied to some of your comments but I have been in the haze from my 5th chemo dose and am only able to think straight and type effectively today!

Nothing much has happened other than I researched the statistics and prognosis thoroughly and wrote a long letter filled with references and hyperlinks to both my surgeon and my oncologist to represent my viewpoint and concerns at the MDT meeting. I was terrified that they would ignore my wishes and anxiety and just review clinical risk.

My oncologist recommends that I wait for mastectomy and immediate reconstruction of healthy breast at same time as planned reconstruction in a year or so then "that would be a good compromise". But I am still focused on what if it comes back in the meantime... She said that she has never known someone be refused surgery if they insisted.

The MDT has already taken place - I will find out the results when I visit the surgeon again next week. Will let you know the outcome. But the more I have thought about it - the more sure I am, so I have everything crossed that they agree.

I will post again when I know the outcome. Thank you all for your thoughts, advice and hugs!

Rebecca
booksandwine
Member

Re: Preventative mx - reluctant surgeon

i was diagnosed in Feb with invasive in right boob and later from mri scan they found something of concern in left boob - I have said all long if one goes they both go - I was to have had surgery in March - but chemo was put first - I have seen surgeon a few times since March and he has said my decision and I just keep repeating bi-laterial - My advice to you is keep strong repeat bi-laterial and look to get a second option / see other doctor.  As my chemo is going well the oncologist said lumpectomy the last time I saw here - I said No one has spoken to me re a change of plan I am still having bi-laterial.

 

While I'll miss my boobs I plan to reduce my changes as much as I can for repeat - STAY strong!!! and push for what is right for you - as I am a 36E losing both and reconstructing both to be the same will be easier in long run

Jo1
Member

Re: Preventative mx - reluctant surgeon

Hi mysticalmoo,

 

I'm back on the forum after having my mx and wondering how it's going with you, whether you've spoken to your surgeon again or decided to change surgeon. Hope all's well with you,

Jo x

songbird68
Member

Re: Preventative mx - reluctant surgeon

Hi I'm sorry you're going through this. I wanted bmx for my ER+multifocalIDC+DCIS but was refused at the time, they said to see how I felt later on rather than make a panic decision given my highly anxious frame of mind.

 

So, I am the same as Southpool, in that uni mx to deal with cancer and then I saw a psychologist, who liaised with the breast care team and then they agreed to remove the remaining breast. I am having mx with immediate recon done next week, which is ten months after initial surgery.

 

best of luck and hugs

x x

 

 

southpool
Member

Re: Preventative mx - reluctant surgeon

Hi

I had an occult bc in 2012 that didn't show up on imaging & the only cancer found after Mx was a 4cm lump in my lymph node. I was completely paranoid that there was cancer in my other breast not showing up. My surgeon wouldn't do bi lateral Mx as he wanted me to deal with the cancer 1st. But as soon as I finished active treatment I we t back & after a pysch appointment he agreed to surgery. I had a planned Mx at the end of 2013 and the pathology was fine. I don't regret it for a moment even though I lost a healthy breast. My surgical team never dismissed my fears just said they prefer to let you deal with a cancer diagnosis 1st & not have a knee jerk reaction. I would go back to your team & express your very valid fears again & ask for a pysch consult.

Good luck
S x

jillybee
Member

Re: Preventative mx - reluctant surgeon

Oh my goodness. You poor person. I had a Mx one side due to high grade DCIS,last year, and my lovely surgeon said she would do the other side, as had implant from mastectomy some years ago.It never really looked right.In fact, it had twisted over the years!

 

Hope it all goes well, and can so understand. You could have a BOGOF, have one side done and get the other one done for free!!! I would ask to get the other side done, can so identify with you.If not, ask to speak to another surgeon.

 

Gentle hugs.

cs1
Member

Re: Preventative mx - reluctant surgeon

Hi Mysticalmoo,

 

You will find the fight you need, we all have had to do it in one way or another.

 

I have completed 8 chemo and now surgery, and when I look back I can't see where  I got the strength from, but you just do it!!

 

Good luck and make sure you fight your corner, this is your life. I think sometimes that although the teams helping us are excellent and understanding, they don't understand really unless they have been in the same situation. No one an really understand, and that is why this forum is so good. We have all been there and all had the same sort of problems.

 

Good luck!!

Mysticalmoo
Member

Re: Preventative mx - reluctant surgeon

Thanks cs1,

Thank you for your reassurance. I'm really frustrated and finding this whole attitude very upsetting.

I intend to fight or switch surgeons. I just really hoped for more support from my team. Just don't have the energy for this right now but I will have to find it from somewhere!

Rebecca
cs1
Member

Re: Preventative mx - reluctant surgeon

Hi there,

 

Just thought I would reply to your problem. I don't write often, but do read regularly.

 

I have just had a double mx (7th May). I opted for this as I had invasive in the left, and also very small DCIS in the right. I also lost an aunt and my sister to BC.

 

Luckily my surgeon never questioned my decision, but I would say that if he had I would have gone ahead with a second opinion. So I think this may be somthing you might want to consider.

 

The whole thing is hard enough without having to fight with the team that is supposed to be helping you!!

 

You must do whatever you feel is right for you, and if that means putting up a fight then do it. All that matters is that you get well and have peace of mind.

 

 

Mysticalmoo
Member

Re: Preventative mx - reluctant surgeon

Thanks Jo,

Good luck for your surgery and thanks for taking time to reply.

I can't believe my surgeon is so negative when people can get cosmetic surgery because they are unhappy/ depressed about the size of their breasts. Mine might one day kill me....!

Hugs to u too!
Rebecca
Jo1
Member

Re: Preventative mx - reluctant surgeon

Good morning MM, I don't have any experience to tell you about, just popped on to say how awful it must be for you and to wish you well.

 

 Like you, I have lobular cancer and knowing it can be there and not show up on mammograms or show as a lump and could have been there for ages scares me too.

 

I've decided to opt for mx on my left breast, having been told my op next week will be a WLE with the possibility of a mx depending on what they find. I'm also thinking I will ask for a mx on my other breast. I've already had 3 WLEs on that, and feel just the same as you about cancer being present in it.

 

Good luck in your doubls struggle, MM.

Hugs, Jo

 

 

Sam_BCC
Member

Re: Preventative mx - reluctant surgeon

Hi Mysticalmoo

 

It sounds like you're having a pretty difficult time at the moment. I'm sure some of the other users will be a long soon to offer you their experience and knowledge.  In the meantime you might find it helpful to talk things through with a member of staff on the BCC helpline.  Here you can talk through your thoughts and concerns with someone who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator     

Mysticalmoo
Member

Preventative mx - reluctant surgeon

I have a large 9cm invasive lobular cancer in my left breast. I had no idea and had no lump only firmness and eventually a dimple in the skin. This tumour may well have been growing for 8-10 years!

Have requested the removal of right breast at the same time as mx next month after 6 FEC-T sessions. Right breast is dense and lumpy (had a large cyst drained last night of over 50mls fluid) and will be difficult to monitor myself. I am terrified that I will have another stealth tumour which is not picked up through screening as mammogram and ultrasound did not find this cancer.

Both oncologist and surgeon said were not happy to recommend surgery. I have only moderate family history and not high risk so they are reluctant. I want the bilateral mx because I am terrified that there may be cancer already in the other breast that has.not been picked up; I understand there is an unacceptable risk of another primary (40% I believe) and I would prefer symmetry while I am undergoing radiotherapy and before I can have a reconstruction.

Has anybody got any advice or experienced anything similar with their medical staff. I am finding this really distressing. Is it not bad enough to have to fight cancer, without fighting the doctors as well...?

PS I am a private patient and willing to pay for any shortfall to ensure this happens so it's not a financial reason...