Hi Jolamine

im meeting my surgeon tomorrow actually where he will I'm guessing go over options. I met the oncologist yesterday who said the CT scan looked clear for the rest of my body which I am so relieved about as I was so scared of what he was going to say. 
I did tell him though that I would be happy to just go for a double mastectomy but he said that they would not want to remove healthy breasts and that removing them does not deter the cancer from coming back. 
what is your opinion on surgery? I would love to know your thoughts from experience. 
Also how old were you when you were first diagnosed? 
 

thanks so much 

xx

Hi Ems

Sorry for the delay....

I rememeber going through the forums and groups when i was first diagnosed and i think sometimes it doesnt help as you read alot of scary stuff! 

Im pleased to stay that i am really good! It will be 2 years on the 1st June since i was told and at the time i honestly thought the worst. 

So i was diagnosed with triple negative stage 2a grade 3 with no lymph involvement. 

I had 6 (3 weekly) chemos (abraxane & carboplatin) first then i had a lumpectomy with sential biospy (3 lymph nodes removed) and then i had 4 weeks (20 sessions) of radiotherapy. 

I can understand your thoughts around having a double mastectomy and i think it completely comes down to choice. I know some women have kicked off and said what damage it would do to their mental health and manage to get a double mastectomy so i think it is possible. 

I did ask for a second opinion and i was happy with my decision in the end as it was explained to me that a double mastectomy was simliar to having a lumpectomy and radiotherapy.

I know how scared you are at the moment and i was too but when i started treament i actually felt a bit more in control and kinda knew what to expect with feeling pants with the chemo. 

My husband and i have tried to laugh as much as we could through it and i remember telling friends that he kept saying he was enjoying me having the radiotherapy as he'd never seen my boobs out so much!!! ...... i was letting the fresh air get to them after my sessions!!!! 

Please ask me anything, im happy to help where i can xxx 

Hi Tiamaria 

thank you so much for your message and I'm so pleased to hear you're well. Have you had to take the hormone therapy tablets? 
I am beginning to come round to the news but am still so shocked. I take very good care of my health in fact I'm neurotic about my health! I had a private ultrasound at the end of last year for screening purposes and it came back totally clear so I don't understand how in 6 months this has happened but I guess it just does happen. 
I am now trying to think positively and listen to the confidence in my oncologist but I can't help but have the worst thoughts about the what ifs.... 
thanks again for your help 

emma x

No problem, I was the same. 

No tablets for me, because I was triple negative they can’t actually give me anything for prevention as they don’t know what causes it. 

Im now actually post menopause due to the chemo so it's currently being discussed that I might start taking HRT soon. 

I don’t know if you got fobbed off a bit but that’s why I ended up fully going private as they just said my lump was hormonal because of my age and it was nothing to worry about. 

My lump (2.7cm) didn’t show up on the mammogram either so I now have a mri with a mammogram once a year and a general check up every 6 months. 

Some people don’t like lots of appointments but it makes me feel better! 

I think it's normal to think the worst. I actually got a bit annoyed with some friends and family as they were just ‘oh you will be fine, people go through it all the time.’

I think some people don’t know how to deal with it when you tell them!

I was so worry about scaring my little boy as he’s autistic and has trouble with his speech and understanding but the first morning he saw me with no hair he came over and stroked my head and said hello mummy. I was so relieved! 

I had my husband shave it off one night when it started to come out as I kinda wanted to be in control and not watch it come out slowly. 

We both agreed that my wigs were actually nicer than my natural hair!!!!

It’s good you're trying to think positively, I defiantly think it helps.

Don't get me wrong you will have your bad days but we did try and joke as much as we could and I think that helped.

xx

That is so helpful thank you! I am going privately through my insurance and things are moving quickly. 
my 3.5 years old hasn't been diagnosed with autism but he does have a developmental and speech delay too so he doesn't understand what's going on which I'm glad about! 
I'm actually looking forward to meeting my surgeon tomorrow and istening to the options. 
I'll let you know how it goes! Xx

I can understand that, you will actually know more about what you've got to deal with and he'll let you know your opitions. 

Thats what we thought about our little boy at the time. He used to actually find it quite funny when we used to get in from the nursery run and i was so hot and i used to say 'mummys going to take my hair off in 1.....2......3 ' and he'd shout GO!

I dont know if its already been mentioned by your oncologist but there's an injection you can have when your having chemo and it helps your immune symptom. It called neulasta.

Some of the ladies i made friends with at one of the local hospitals told me that they were only given these types of injections if they got a problem and i found out from my oncologist that i could have it automatically due to the private insurance i had. 

Yes let know how you get on xx 

Hi Ems,

I hope that all goes well with your surgeon tomorrow. Surgeons are usually very reluctant to remove healthy breasts and say that removing both doesn't improve your chances. I am delighted to hear that the rest of your body looks clear and am sure that this must come as a great relief. We all tend to think the worst case scenario while waiting for results, but fortunately, this seldom happens.

I was 59 when I was first diagnosed and had a lumpectomy. Mine was Pure Mucinous Cancer, grade 1 and, I was told that, if I had to have cancer, this was one of the best sorts to have, as it didn't grow very fast. I developed a lump in my other breast less than 6 months after my first diagnosis - fortunately that turned out to be large, but benign. Almost exactly a year after my surgery, I discovered yet another small lump in my original breast and, I wasn't so lucky this time. I discussed various options with my surgeon. Like you, I was happy to go with the double mastectomy, partly because of the lump, but also because my mum died as a result of secondary breast cancer.

When I mentioned this, my consultant was quite happy and we decided upon the double mastectomy. Unfortunately, because of previous non-cancer related surgery, I was not a suitable candidate for reconstruction, but I manage well with an assortment of different prostheses for my various activities. I have never regretted my decision, as I now feel that I have done all that I possibly could to prevent another recurrence.

I know from reading posts here over the past 11 years that many people who want a double mastectomy, are refused on the same grounds as you've been given, so I feel fortunate that I didn't have to press for it. Some people are quite happy not to have reconstruction, but others want this as soon as possible. I have had problems in the past when I stopped breathing on the operation table. This is always a risk now whenever I have surgery, so I felt that it was ok to add to the risk to remove my cancer, but I wasn't keen to put myself at further risk just for aesthetic reasons.

Whatever decision has to be yours and yours alone, as you are the one who has to live with the outcome. Draw up a list of questions for your consultant and be guided by his/her advice. Tiamaria has given you some good advice – it really does help to stay positive.

Please let us know how you get on tomorrow.

Kind regards,

Jolamine xx

Hey

Just ignore this if you dont want to talk but i was just checking in to see if your ok? 

xx

Hi! 
so glad your surgery has happened. Sorry I'm so spaced out from my chemo on Tuesday. I feel ok just very spaced out but when I got home after having had the EC chemo it hit me very hard but since then I've been feeling like this. 
Ive been talked to a lot by my doctors about my surgery that will follow chemo. I'm waiting for the results of my genetics testing but I think they will come back negative but we'll see. If they come back positive though I understand that will be a double mastectomy and ovaries out no questions asked. 
are you very sore from your surgery? Xx

Hey, 

You dont have to apologise i just thought it was worth me asking! How often are your chemo's? I had to have that done too and i was kinda convinced that they were going to come back positive but they didnt. As far as im aware you always have a choice on what you want to have done but when i was waiting for my results i had already decided if it came back positive then id have the preventative surgery. 

I dont know if your asking me or Jolamine about surgery but mine wasnt too bad. I had a lumpectomy and found the worst part was having the lymph nodes removed under the arm as it restricts movement which wasnt great with a 3 year old at the time!!! Out of the whole treatment i found chemo the hardest. 

xx