Hi all

thanks for posting this is really helpful for me

i first went to my clinic in mid November and am still without treatment as they missed cancer on the scans and told me I could watch and wait for four more months or have one duct removed as the cytology from the bleeding showed something most likely benign. i didn't want to wait as I had a new 6 month contract tract due to start in Jan and didn't want to mess the clients I would be counselling around as I was on zero hours to help with a backlog on face to face sessions 

so luckily for me I didn't wait as I only found out in Jan that what had been called a papilloma on discharge was actually all high grade cancer of several forms including micro papillary, solid, flat and with necrosis and mucroinvasion

I was told new operation within a few weeks but that first must have an MRI to see what to cut out. Actually I wanted a mastectomy but haven't even been asked!

I'm aware of recent research on micro papillary forms and also my histology says CK14, ER negative and P63 and I believe that can be more aggressive. 
 

I've had symptoms for 9 months now and I just want to maximise my chances of being able to work as I cannot afford a good life without that and have the very best chance of a life without recurrance. 
 

At the moment any treatment at all is blocked as the MRI has found another area of 9.5cm (where I have been fighting the doctors to check but been told nothing was there) of suspected DCIS ( and a second opinion says there is third area at the back of the breast but hospital didn't see that!?!)I now have to wait for biopsy's and it looks like 6 more weeks til I can an operation. Meanwhile I need to live with out being able to start the job and woth an incompletely exorcised tumour and no margins at allall so still the microinvasions not treated. 

it's interesting the surgeons really want to save my breasts and nipples. While I would prefer to get rid of even a few cells and the higher risk of recurrence from this likely basal subtype of cancer that isn't just in the duct.

reading this has helped me gather courage to insist on at the least the one mastectomy. My life is worth more than my nipples and while I would love to keep my breast, I want to stop recurrance more than anything. The tips on prostectics are so hwlpful

wishing you all well, long and happy cancer free years 

Hi Elaneh,

It sounds as if you are having a time of it. 

I am so sorry to hear that the MRI has found  another couple of suspect areas. Have you got a date for your biopsy yet? I do hope that it comes along soon. Many people are keen to have reconstruction after surgery. Like you, I just wanted to be sure that I had got rid of everything.

First time around, I had a lumpectomy, followed by Tamoxifen for 1 year. I didn't bother with reconstruction. Six months after my surgery, I found a larger lump in my other breast. My consultant was pretty sure that this was cancerous too, but fortunately, the biopsy disproved this. Almost a year to the date of my first surgery, I found another lump in my original breast and, this time I wasn't so lucky. I wanted a double mastectomy at this stage and, was fortunate that my surgeon was in agreement.

Most surgeons, are not at all keen to remove a healthy breast, as they say that it doesn't increase our chances. I didn't bother with reconstruction, because I didn't relish having to have this removed if I developed another lump. My last surgery was nearly 12 years ago now and I have never regretted my decision. I manage well with a selection of prostheses for different activities and occasions. I must confess that I feel happier this time around, as I feel that I have removed all that I can to prevent recurrence.

I do hope that your surgeon will agree with you and perform a mastectomy. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi thanks for replying Jolamine. I  am glad all is going well for you now

and Helen I hope you get the treatment that suits you and all goes well  

I am going to try hard to make them allow me to have a choice in treatment and to start addressing my concerns 

Hi Elaneh,

It is always difficult at this stage, because you feel that you are no longer in control of your own life. It is all too easy to become tongue tied and to forget important concerns in the heat of a consultation. Write down all the questions you have for your consultant and make your case for a mastectomy. You will feel better once you start to take back some control.

Kind regards,

Jolamixx

Thanks. 
 

Hi Jolamixx

i got the results of the biopsy--confirmed what a second opinion had said from the MRI which showed a BIRADS 6-- it's all cancer with multiple focus of Mucroinvasions.

luckily the London hospital is going to assess me and at the very least advise the local hospital on how to treat, or even better take over treating me. meanwhile while I wait for that appointment my surgeon has finally agreed to mastectomy!