Hi Magpiemaggie,

I am sorry to hear about your predicament at the moment. I thought that I would just drop by to say that I have had two bouts of primary breast cancer. The first bout was 8 years ago and the second was 7.  The first time I had a lumpectomy followed by Tamoxifen, the second I had a double masectomy followed by 6 years of Letrozole. I finished taking Letrozole last July.

I was also advised to have radiotherapy after the first operation, but, due to procedural errors, this never happened. The fear of recurrence is something that everyone with a cancer diagnosis has got to learn to live with. I never expected my second diagnosis, because I have a rare Mucosal cancer. Only 1% of people get this type of cancer and it is not supposed to be that aggressive, so you can imagine just how surprized I was when it was back within less than a year.

I must say that I found my mastectomy much less bothersome than my lumpectomy and, feel much happier that I have done as much as possible to remove any cancer cells. If I can be of any help to you, please don't be afraid to ask any questions. The one thing that I cannot help you with is reconstruction, as I was not a suitable candidate for this. However, there are many others here who can give you their experience.

Don't be afraid to discuss your 3rd option with your surgeon and discuss any other concerns that you may have. You really need to weigh up all options before you can be expected to reach a decision.

I was told that although I couldn't have reconstruction at the time of my operation, that I would still be able to have it at a later stage, albeit that each side would need to be done separately. In the end, I coped well with my various prosthetics and decided not to bother.

Do please let us know what you decide to do, but remember that we are always here for you.

Kind regards,

Jolamine xx

Thank you, I wish I was more like you. Half of me is saying just have the mastectomy ad put it all behind you the other half is saying that’s too extreme, I really am lost here.

My nurse is on holiday this week so won’t get to speak to her until Monday, the  consultant next Thursday. Not sure if I can ask for another team as resources are scarce and this team are 15 miles from home. I think that is also adding to the stess as I’d prefer a hospital close to me. 

Thank you, I spoke with my mum’s cousin yesterday plus bumped into a neighbour and told her, unbeknown to me she had bc about 20 years ago. Both had lumpectomies then bc came back and thereafter mastectomies. That’s my worry, going through a lumpectomy and then having to go through it all again. My mum’s cousin ended up having to have chemo and spent nine weeks in hospital. It was a horror story and frightened the life out of me. It’s hard to not think of the what ifs and panic. 

I think my problem is overestimating the risk. This is due to not having the conversation with the surgeon in our initial meeting as he was more concerned about how my breasts would look rather than being told the extent of my DCIS and it’s grade etc. I was left in the dark and lied to. Plus of course being extremely anxious I hone in on forums, some with real horror stories and a lot of misinformation. Yet to see a forum where people have had treatment 10-20 years ago and have been cancer free all that time. I guess they are busy getting on with their lives. I guess I’m loooking for positivity and reassurance. 

Hi Magpiemaggie,

If you are so afraid of the spread of cancer after a lumpectomy, then there is really only one answer for you. However, I am sure that your GP wouldn’t even offer this option if he wasn’t confident that he can get it all with a nice clear margin.

A word of warning though - anyone who has had a cancer diagnosis has to learn to live with the fear of spread. I really looked forward to finishing my Letrozole last year, but since I stopped taking it, all of my fears have resurfaced. I feel as if my safety blanket has been pulled from under me. I believe that many others feel the same. I don’t mean to rain on your parade, but want you to have the full picture before you make your choice.

Whatever you choose, I hope that you make the right choice for you.

Kind regards,

Jolamine xx

Thanks hun....i will of course. X

Hi Magpiemaggie,

It is difficult to decide on the best way forward when you don't really know all of the options. I am glad that you have managed to speak to other cancer warriors yesterday. Treatment has improved dramatically in the past 20 years. I lost my mum to cancer then and there is no comparison whatsoever between the treatment and aftercare she received and that which I have had in the past 8 years.

To be honest, I was terrified when I discovered a second primary cancer and was frightened, expecting the surgery to be much more brutal than the lumpectomy, but I actually found my double mastectomy easier and didn't have the same discomfort in my breasts afterwards.

Anyone with a cancer diagnosis has to learn how to cope with the fear of spread. Unfortunately, there is no easy way to deal with this. I had been looking forward to stopping taking Letrozole, thinking of it as the end of my treatment, but have had more fear of recurrence since I stopped. It's strange, but it feels as if my safety blanket has been pulled from under me. The only plus is that I shed so many tears at the outset, that I don't have any more to shed.

My lymphoedema nurse noticed a mole on my back at my last visit and advised me to get it looked into. I am waiting to be seen by a dermatologist at the end of the month. I must say, that I hadn't expected this, but so far, I have remained fairly positive about it all.

What a pity that you don't have a nurse with a bit of empathy. I changed hospital and surgeon half way through my treatment and found that it made such a difference to have someone that I could talk to. In most hospitals there are usually at least 2 breast care nurses. It might be worth finding out if this is the case with yours? It sounds as if you couldn't be any worse off with a new face.

I have a distance to travel to my hospital too, but find it so much better than my last hospital, so I am happy to travel the distance.

I do hope that you can get some clarification on what your surgeon considers to be the risk of recurrence after any of the options offered.

Kind regards,

Jolamine xx

Hi all. Op  done. Still in hospital. Bp  remains really low at the moment  (85 when done 30 mins ago). 

Boob looking a lot lot smaller but pain is manageable with the meds. Hoping to go home today x