To have the op or try alternative

Love the kitties and the cuddle bunnies. Here are a couple of pictures of unusual friends. And a big cyber hug sent to anyone that needs it.

How the heck do I stop the alerts on this thread ? I didn't ask for them and I have trillions ! ‍♀️‍♀️‍♀️

Loving the fur balls though

Hi plastic, sorry your joining us here. I'm not really too familiar with metaplastic BC and a quick Google tells me that it's rare, 1%!  You must feel very alone but you are in the best place for support. Firstly I would suggest starting a seperate thread, as you might  just get lost in this one. if you haven't already, join the triple negative group. There will be lots of info and support there.

Is your appointment on weds to discuss treatment options? It is very frightening, waiting for test results, fearing the worse. Our minds can go down very deep dark holes, if we let them. I felt like I was out of control. I think though, when I got a treatment plan I could deal with everything much better. It was scary, but I felt better, I knew what would happen and when and I could make a few plans.

What time is your appointment? Try to take someone, it can be for support or to remeber the bits you forget. There's such a lot to take in, it's easy to miss bits so make notes if you need to and ask as many questions as you feel you must. I made a little list. I found it helped because my brain was like a Swiss cheese in the early days. 

Post on here if your worried, or just need to let off steam. There is usually someone awake to give you a cyber hug. And please let us know how you get on .

Heres a big cyber hug from me ((((((((HUG))))))))) and sending you love 

Kerry xxxx

Unknown said:

How the heck do I stop the alerts on this thread ? I didn't ask for them and I have trillions ! ‍♀️‍♀️‍♀️

Loving the fur balls though

Hi  if you go to https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/p/54240/1061722#1061722 scroll to the top of the webpage then in the right hand column there is a panel labeled discussion tools and you click stop emailing me updates for this discussion.

<<hugs>>

Steve

Thank you, Steve! I think I have done that now

hi  

a warm welcome from me too

as KerryCake suggests there is a triple negative group but the main breast group is busier

I don't think the treatment is much different, to be honest, I'd focus on talking to people who are facing chemotherapy generally rather than specifically. We have a monthly chemo club

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/137017

and  was also triple negative.

have a look at that thread and join in ?

I finished chemo Christmas Eve 2015, that's a while ago and I feel fine now, the main thing I remember was feeling tired, incredibly overwhelmingly tired. 

My anti sickness meds worked so I didn't really suffer nausea.  My hair fell out but it's grown back, I've just had my first hair cut but I'm not a regular at the hair dressers. 

hugs

Carolyn

xxx

Unknown said:

Many thanks to everyone who has replied to my piece. 

Some have been severely negative but then I expected that (as its hard to understand someone who wants to deviate from the conventional route) and some have helped to stop me to re-consider the conventional route.  However, my head still cannot come to terms with the side effects of the conventional treatment though.  Why would anyone choose to go this path! when the alternatives on this Macmillan site show another way.  What also keeps pushing its way into my head is this route was chosen as it is cost effective to the NHS.  Is this the cheaper of the routes!?! leaving your immune system to deal with the after effects? - if it can!

Leaning, at the moment, to Photodynamics - looks 'chuddy-blood'.

chloecat45,

I felt exactly the same as you, trying to decide between conventional and alternative treatments, and I also felt badgered by other people, medical professionals, family and friends, to go down the conventional route.

I too turned down my first operation date as I wanted time to think.  I was diagnosed Feb 2011 and didn't have the op until August of that year, having obtained a 2nd opinion.  My consultant, Mohammed Keshtgar, at The Royal Free in Hampstead, had, the year before, trialled Photodynamic Therapy on 100 women.  He had a 98% success rate!  I was told this wasn't available in the UK as NICE (who always seem slow to sanction new approaches to cancer treatment) had yet to sanction its usage.  In the end I opted for mastectomy, chemo and rads.  I had immediate reconstruction using an implant, but developed capsular contracture due to the rads.  The implant is now very hard and needs to be replaced.  BUT, even before the rads, the implant doesn't feel like a natural breast!  I wish I'd never had the mastectomy; it's destroyed my confidence and, frankly, I've never felt the same since!

If you have the chance for photodynamic therapy, and I'm not sure if it's licensed even now, GO FOR IT!  There are a number of breast cancer charities who can advise on alternative approaches, so research these and ask about this therapy.  It negates the need for a mastectomy or lumpectomy.

Do let us know how you get on. Stay strong and do what you are happy with.  And yes, you're correct about conventional treatments saving the NHS money.  Get some back up from charities who specialise in alternative approaches.

Hugs and best wishes,

Beverley. X

Flipping heck! Think, maybe, I shouldn’t do any more whinging??!!?? HOWEVER, this is my post chronicling my journey and the problems I encounter along with my thoughts, updates etc. It is not intended to ‘diss’ other people of their treatment choices nor to frighten the vulnerable, and don’t forget that I am just as vulnerable. I do actually credit people with intelligence to either absorb the info I give or to leave it - just as I have, along the way, ignored things which I believe would do me harm, ie just one of them - black salve.

I do believe that we are now at a point in research where researchers and scientists are exploding into the cancer research area to provide better and more targeted treatments which will be much kinder nullifying, if not replacing, the existing regime. Certainly a growing band of surgeons are now recognising that at some point in the future only surgery will be done where it is needed – not as a first line or part of treatment.

Advances won’t be made for better treatments of BC unless we question what is being done to us now. A one-size fits all approach does not fit all. I was particularly heartened by the new treatment of TNBC. One step forward.

I would like to thank all my champions on my discussion. You get the point. For the negative comments I don't really need to say anything.

Love to all

Hi Carolyn ......you sent me  a friend request ...I think it was on this thread , I am technologically a luddite and have totally failed trying to accept it ....sorry .....best wishes  x

Hi

you are not so much of a Luddite, as if you click on your profile name on the left above, it will take you to your profile where you can click on your friends. You will see in your list of friends that Carolyn28 is there. You've done it congrats. 

Best wishes to all.