MX with immediate reconstruction, chemo, radiotherapy and letrozole - anyone having all 4!!!

[newey47]

Hi Hazel I know exactly how you feel believe me. I only had left Mx with immediate construction and the surgery really wasnt too bad.  I had all lymph nodes out, that has been the most uncomfortable to be honest.  The implant is very hard  and high up and it doesnt look that great at the minute if I am honest.  I hope it improves with time.  It just feels so foreign, you will notice a lot of other ladies saying the same.  But at least I have a mound rather than nothing.  I couldnt face the other options either to be honest.  I am 3 and half weeks along now, and tbh the last week, things have been improving more and more.  I took it really easy for the first few weeks, as was paranoid abou messing up the implant.  I now feel more like my old self.  It was scary going in for the surgery but there really is nothing to worry about.  I went int about 8.45am, I was back home at 4.15pm and I am 25milesaway from the hospital.  I had toast and coffee before I left.  I had the drain in for 6 days or so, it was a bit of a nuisance, partner held it while showering lol.  Felt much better and mobile once it was out.  I did take ibuprofen and paracetemol all the time for the first 10 days, and took both at bedtime to get some sleep. I find sleeping on your back very difficult.  I bought one of those V shaped pillows which has been an absolute godsend and I recommend one highly.  Even good for sitting on sofa too, and supported my arm well.  I am still using it at night cos I cant sleep on my side comfortably yet. Do not worry (although you will) you will be fine, not long to go now, get yourself as strong as you can as this will help you no end.  Take care and let us know how it all goes.  Val xxxx

[Hazelr]

Thanks for your message as I ahave just finished 6 chemos fec and t and am having surgery in May. I think I will opt for bilateral mx same as you with immediate reconstruction with implants, can't face other options. Not many girls seem to have had this done so nice to hear from someone who has been through it and out the other side. I have read quite a lot of horror stories about surgery and I hooped it's not as bad as it sounds like it could be. I am having a rest for a few weeks until surgery so hoping to build myself up physically and emotionally until then. I am having herceptin for a year. Feel sick at the thought of it all xx

[newey47]

Thank you so much Gilly for all the info.  You are so right, I have decided to do exactly what you say.  Take one step at a time and no more.  I am now concentrating on keeping well and as fit as possible before my first chemo.  I will worry about everything else if and when it happens. Thanks again - Val xxxx

[newey47]

Thanks Tracy xxxxx

[Butterfly318]

Evening Val

As Tracey says the Chemo really is doable.  I was fortunate not to have got an infection at all over the 8 sessions.  Once i had a very high temp and went to A & E as it wasn't coming down.  Excellent care, it was snowing / midnight but they did every test they could think off looking for infection and brought out the Radiographer on call from Bradford over the Pennines, i felt dreadful but they were just great.  The unit i went to used GCSF (to build up white cells) one high dose 24hrs after Chemo.  This causes pain in hips and long bones where cell preduction goes on.....

I had a tissue expander in following Mastectomy.  The surgeon agreed to this thinking i wasn't having rads (she and the oncologist had different thoughts)  Oncologist strongly recommended rads.  It made very little difference to the implant and i have since had the Expander replaced with a silicone.  Some surgeons prefer not to do rads with implant but mine is fine.  One of the girls i met during treatment, hers did shrink back but she's just had it replaced with a slightly larger one 18 months on, small surgery.

I think it all feels overwhelming when there is so much going on.  Take it one thing at a time.  Chemo first, take good care of yourself during that and then the Rads which will be a walk in the park.

Good Luck with the rest of your treatment.

Take Care  Gilly x     

[Tracy1967]

Hi Val, as I say chemo was no where near as horrible as I thought it would be. I was neutropinic 3 times but felt absolutely fine, hospital drove me crazy. They gave me GCSF injections for the final 3 chemo sessions which helped with the blood count and kept me out of hospital. If need any help with anything or need to sound off you're welcome to drop me a private message.

Take care, Tracy XXX

[newey47]

Thank you so much Tracy for your account of what you have been through. I really appreciate you taking the time. I am glad the radiotherapy didnt affect your implants too much, thats great news. So many parts of the country dont do reconstruction if radio is involved, I was a bit worried......The lipofilling sounds good maybe I could have that in the future. I too am not interested in tummy flaps, or back muscle being moved it all sounds far too drastic to me to get better boobs. In fact if mine fails with the radio i think i would rather it be taken out and do without than those other options. I am aslo glad to hear that chemo wasnt too bad for you either, apart from the nuetropenia on 3 occasions, that sounds really bad and worrying. I will just have to hope that I dont suffer with too many symptons, and If i do will get help with them as much as I can, and I will just have to get on with it. I look odd because i only have one implant, which is so much higher than my real breast, but i am getting used to it and as u say it can take years to settle fully. I am hoping the weight of the implant will stretch the skin over time. They have said i can have an implant on the other side to balance it, but at least at the moment i have one real one with proper feelingslol, i dont fancy another implany tbh. Still thats all in the future, i have this bloomin chemo to get through first. At least my hospital have an outreach centre only 12/15miles from me, which is better than the 25 the hospital is. Shame they dont do radio too, would be so much eacier. Anyway thanks again Tracy for all your info and input, I really am grateful. Keep in touch and take care Val xxxx

[Tracy1967]

Hello newey47 (Val), I was diagnosed in Sept 2013 (just turned 46) and opted for a bilateral mx with immediate reconstruction of implants and strattice. Nov 2013 - Mar 2014 I underwent chemo FEC-T which wasn't pleasent but was doable (ended up neutropenic on 3 occasions -just my luck), hardest part for me was the hair. I did cold cap and was never bald but I'd say I lost over 1/2 of my hair. As it was even loss it's amazing how much hair we actually have. In April -May 2014 I had 15 sessions of rads to under my arm. breast surface and chest wall. My implant has stood up well and 12 months on it's not changed in shape etc. The implant may be a little harder but nothing I can really notice. I do have a small amount of scarred tissue (hardening) now on my actual scar under my breast which I didn't have prior to rads (again you can't see this and I have to push on the scar to feel it). The breast is also more sensitive where I've had the rads, especially the side and chest wall (sometimes feels like a strange bruised feeling). My BCN says this is due to nerve damage and nerves knitting etc, the operation can take years to settle and rads also impact this. Had my implant capcilated I could have had this changed or opted for a different reconstruction (I didn't fancy having my tummy or back cut). I think inplants are hard in general, they don't move as such so I've opted to have lipo modelling at some point in the future. They extract tissue from your tummy or tops of legs (keyhole) and inject this into your breast to soften then up, giving more movement. I forgot to mention I've also been on Tamoxifen for 12 months with no side effects. I wish you well with your treatment, always keep an open mind, remember what happens to one person may not apply to you. I read loads of horror stories re chemo but I was fine, hair loss was definitely the worst for me. I even worked part time from home. The one tip I'd give you re chemo is to drink plenty of water especially on chemo day. If you suffer with sickness after your 1st chemo ask for Emend, it was a god send for me. I never suffered from fatigue with chemo or rads so count myself lucky. The travelling to and from hospital and waiting for rads appt was more of a nuisance than the actual treatment which took 5 minutes.

Take care and stay positive, time goes quick and before you know it you'll be out the other side. Tracy XXX

[June_BCC]

Hello Newey47

Whilst waiting for replies you might find it helpful to call our Helpline to talk things over.  They'll be able to offer practical information as well as emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The free phone number is 0808 800 6000.

Best wishes

June, moderator

[newey47]

Hi all.  I am 3 weeks post Op left breast MX, node clearance, immediate reconstruciton with implant/Strattice mesh.  I am doing well post op.  Just been for my Onc appointment for the plan ahead. Two lumps 13mm and 15mm, 5 nodes out of 15 affected.  Totally shocked to now find I have to have Rads as well.  This has never been mentioned to me before, thats why I had immediate reconstruction.  Onc consultant came in and swiftly mentioned spots on liver.  TOTAL SHOCK as had been told all scans clear.  He then tried to backtrack saying they were NOT cancer, just cysts, which anyone could have and not know about it, just that they show up on scans....they were not worried about them at all and there was not treatment necessary.  Phew, foot/mouth springs to mind.  As I said my Surgery Consultant never even mentioned that, nor the nurses etc...... so mind sort of alleviated, apart from a break down in bed last night.

Upshot is, lymph nodes high in breast affected, so they are concerened that the ones up to the shoulder/neck area.  They cant take them out through breast surgery, so have decided to zap them with Radiotherapy = 5 days a week X 5 weeks - 50 mile round trip to hospital - nightmare.  Expressed my concerns to nurse and her answer - well you dont have to have of it if you dont want!!!!! Arent they supposed to encourage you to go through with the treatment.  Is it worth it? What better chance will it give me? Will my new implant now be affected by the Rads - can make it tighter, higher up etc, already high up enough lol. Will I have to have it replaced? can they replace it?questions, questions.  I always understood that they would not do an implant if you were going to have rads, had I known I might not have bothered, and had a quicker recovery time.  The thought of going through it all again some time in the future is doing my head in to be blunt.  I am trying to now just concentrate on my chemo treatment which should start in the next coupe of weeks FEC-T - will think about the rads later and whether to have it or not - if my brain is even working by then lol

So I am asking, anyone out there have a similar experience to me, anyone who has had all four treatments.  Any help and support would be appreciated - Thanks - Val