Recon- abandoned half way through ;(

Gosh Ania that's tough! I really don't know about the guidelines but I had surgery in June and didn't start radiotherapy until November. Had chemo in between.

I think they have a certain amount of time between treatments. But these timelines seem to be movable when it suits them, but not for the patient. I called the BC nurse after and she said he would be away all next week, but I am desperate to have the expansion continued on Monday, seeing as I had the reduced quantity last time I am really ready for it now. Don't know what to do on Monday, she said there would be no one available to do it, but that makes a huge difference when weeks is what will make the difference!! I would d it myself if I was able.
How can he ring me on Friday evening and just cancel Monday, I have no where to go now. Totally lost ;(

Hi Ania,

I didn't need recon so I don't know what the guidelines are. I had surgery followed 5 weeks later by chemo and 5 weeks after the chemo ended I started rads. I did ask if we could delay the rads to fit in a holiday but I was told it wasn't possible to delay.

I know the wait is hard but could the recon not continue a few months after the rads are over? Is it really going to be abandoned for good? It seems very unfair that you weren't informed that there was a deadline to meet.

Thinking of you and hoping some solution is possible for you.

Hugs

Kath

No way!!!!!
As somebody who had to totally abandon recon before Xmas I can totally relate to how you're feeling....

Surely there is another plastic surgeon or a registrar who could continue the expansion process??

When I had my hiccup the only people I saw were registrars as the surgeon was always away or unavailable......
It's certainly worth pushing for that!!!!

Xx

Hi Ania,
I had my mastectomy at the end of October and also had a tissue expander put it. I've had 3 expansions so far - but my plastic surgeon has also decided to postpone further expansions until after my radiotherapy (which won't start until after I've finished my chemo -i.e. a few months away). In fact, there is a possibility that she might even deflate my tissue expander during the radiation and then will re-inflate it again afterwards.
It doesn't mean quitting - or undoing what has already been done - but it's important that the skin isnt too taut during radiotherapy - so for that reason they don't want the skin to be stretched too much.

Who is your plastics guy? Might be good to just get him to outline how he envisages the next steps to be taken.

In my case it means I have a half deflated boob - and I will need to continue wearing my spcial bra with prosthesis for much longer than I thought - but to be honest I think it's actually better that the skin stretching is done gradually. If its done too quickly the strethcing process can be more painful I gather. Anyway, hope this helps!
Liz

HI Ania - I think that sucks!!!! surely they knew the time it would take before they started with you. Its so unfair just to leave it halfway through you opted for immediately recon and now you are not getting it. Not sure about guidelines at all. I am due masctemy mid April and hopefully like you have imediate recon but surely at that stage they will know what time it will take.

I just think it STINKS - how would he feel if it was another part of his anatomy it was happening to and someone just stopped halfway through.

So angry but dont know what you can do.....kick up a stink I suppose tell them that its your choice, your body and you are not doing rads until this part (as promised) is finished

Good luck keep us posted

Ah Ania, I'm upset that you're upset about this

I know it sounds as if they don't care and that they are only suiting themselves but from their medical end, I guess they have a prescription to fill to help you get totally cancer free and reduce the risk of recurrence. Would you consider ringing your oncology liason nurse and get her perspective on what is going on? Or ring the support line number here on this website?

Take care and hope all ends well x

Hi girls thanks so much for all your responses, I just felt so lost and on my own yesterday, I actually ran out of tears. I just cried and cried. I have decided to go up on Monday and make them put my plan in place which won't be easy, cos even the BC nurse is against me and of all the people she is suppose to be working for the patient so I am standing alone on this one. The plastics guy is gone on holidays so I will have to wait till Friday, till he is back. It sucks because I was a public patient at the start, but I have so many sad stories from my early days there that one of the doctors told me to get out and go private (it was that bad) I was just that patient that fell through every crack in the system, so now there is no team of people, just consultant and if he is gone, he's gone. I was given the impression that my skin wouldnt stretch after rads, I think they took a lot of skin cos I had cancer there as well an internal mass. So it might not work after rads and at 28 I want the best shot of looking as "normal" as possible so I can get on with my life. God I just want a B cup is that so much to ask for!!?? I am going to have to really fight them and it takes a lot of energy to do that, but I feel with the double mastectomy I have already sacrificed a lot, I need a full recon, not a half job, it has to be worth all the pain and effort! Times like this I miss my mam, but she already lost the war against this disease sometimes this is just crap and that's part of it, but I need something to go well for me, and the recon was that thing. I'll let ye know how Monday goes. Fingers crossed for me!

Fingers toes and everything crossed... You have been through so much! I really hope you get somewhere

Xx

Best of luck Ania. This is such a beast. Horrible to hear you suffering even more from this new development.

Good luck tomorrow Ania. I'll be thinking of you and hoping it goes well.

I am so sorry to hear that you are only 28 going through this and that you have already lost your mother. You've been through so much.

Hugs

Kath

Hi girls, suffering from herceptin aches and pains now and a bit of a slow down from pre meds. Can't wait for drugs to be finished!!
Just to let ye know I went up today, and told my oncol what my plan was and she understood. She could see I had my priorities selected and she respected my decision to delay rads in favour of plastics. The BC nurse did not seem to agree but is going to allow it. Needless to say plastics is gone on holiday and I have to wait till nxt week to see him, so it will be delayed 1 week cos of them and 3 because of me, and that is life. I really believe a few weeks is not going to change anything and this panic tactic is not fair. Who rings with a brand new treatment plan on Friday evening!!!??? Not fair. Especially when my brain cannot process info properly. I will be calling the shots from here! I think once I had my decision made I felt much better for it. Its my body and I have to live with it and live with the consequences, but I think it's easier to live with the consequences of your own decision than those decided for you. Feeling happier now. Thanks for all your comments xx

Ania I thought herceptin had little or no side effects? I broke my leg in 2008 and since starting chemo it's really paining me and I'm now limping!! I started reflexology which I hope will help, that's hardly the herceptin that's causing the pain?

Hi, since starting chemo,I react badly to every bit of medication they give me. I have been over dosed and given drugs that my body just refuses to handle more times in the last 6moths than I care to remember!!!

Herceptin can give you flu like symptoms, my back muscles ache, my legs are heavy, my feet swell up, no energy to talk and I will be in the pj uniform till Wednesday. But then I will start to pick up. At least it's not the few good days before the fall as with chemo. I limp out of daycare onc now, with chemo at least I was walking straight. Only 6 more to go...

Well done Ania in getting your wishes across no doubt you feel great after making the decision. As you say its your body you want THE BEST and of course you should have it ... why? because your worth it. So sorry to hear of your Mam passing away from this bugger and I am sure you miss her so much.

We're all rooting behind you and we hope to be seeing a fine pair of new ones after all this

Thanks dee, yeah I just let them panic me. I got it all back on track yesterday, met with plastics and he is happy to continue. And after all that I shud be finished in 2 weeks time. Such drama over nothing!!

The way it was handled was very bad, how can your dr ring you on Friday evening, change the treatment plan without discussing it with you, and then go MIA for a week. Just a mis communication, and I suppose he thought he was doing what was best for me, but surely I should have a say.

No real harm done. Wish I could just stop stressing about all of it. Once the radiation starts, that should go smoothly (fingers crossed!!!) was hoping to get a small holiday in before rads but very unlikely now.