Recurrence of Breast cancer .... 12 months on
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Sandy B - Did your surgeon give you an idea why you couldn't have the immediate reconstruction? I had immediate reconstruction using silicon implant and that was through the public hospital system and my surgeon did both my mastectomy and reconstruction, so no need to see a different surgeon. What area do you live in? Cause I'm in Sydney. Xx Cath
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Hi Cath, You have given me hope! No, unfortunately my surgeon didn't say why I couldn't have I.r. and stupid me didn't think to ask why!!!!!!! I have just tried to contact my b.c. Care coordinator but she is attending a conference for 3 days, so I have left a message... Fingers crossed ...... I will let you know the outcome .... I live in Queensland. Many thanks will be in touch1
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Hi Cath, Just an update
Asked my b.c. nurse why no immediate reconstruction ...... It just isn't available, have to go on waiting list at hospital ....... 8 days until my mastectomy but who's counting?!!!!
Trust you are well x0 -
Hi Sandy, So sorry, that's incredibly disappointing. I know that in NSW there are criteria to meet as to whether the surgeon thinks your body will cope with immediate reconstruction and breast size, but was hoping that Qld had the same rules. Isn't it a shame that it's not uniform across the whole of Australia. Have you got some coping strategies for your upcoming surgery? Something like a white noise app for your phone (I have one of raindrops) that you listen to and have it set to a specific time to turn off so it can help you relax and help you get very necessary sleep? So is your op on the 30th November or the 1st December? And thank you I am very well Xx
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Hi SandyB, I am also a public patient and have seen the plastic surgeon. He is happy to do a bilateral mastectomy with immediate reconstruction which is the plan for me. I wanted bilateral mastectomy from the beginning because I was freaked out, my cancer is only in one breast, so the other mastectomy is elective but they will do it all at once. I am having Diep flap (own tissue) reconstruction. You should not be denied this because you are a public patient, that's not right. Especially as this is a recurrence, you need this. You should be able to keep your dignity, it's bad enough you have cancer in the first place, I wish you all the best Kate xo0
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Btw, I am in victoria0
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@KatyJoy
I just wondered that maybe being public its purely a waiting period! I only say this as here's my story briefly...Breast Cancer 5yrs ago, lumpectomy, radiation and tamoxifen 4yrs. Breast Cancer last July Stage 3 aggressive same spot! Recurrence...Chemotherapy, and now Arimidex. I was told I could go public for Mastectomy/reconstruction but it is a minimum of 3 month waiting list. Private patient is different. I have a Surgeon but see a Plastic Surgeon this thursday, to discuss as I am now 11 months post chemo. I've been told I would have a Diep Flap Recon, My surgeon ordered the BRCA 1 & 2 test, thankfully was negative...so this led to the Geneticists to say to me only a single Mastectomy is necessary even in light of a recurrence. I dont get a choice of implants and Im thinking thats because it was a recurrence.
P.S. Petrified after everything Ive been through to now after all this time to be mending and getting back on with my life to have to elect a Mastectomy absolutely destroys me.
Melinda xo0 -
@melclarity I would think the flap reconstruction option offered and not being implant as only 1 is due a) can match other breast better and b) did you have radiotherapy ? Sometimes the tissue is too thin.0
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@melclarity, breast surgeon told me that as you have a cancer diagnosis, they must do your surgery within 30 days of receiving the referral. I am in Victoria, so I don't know if it's different where you are? It makes sense as it is terrifying, even 30 days is an eternity. For me it's now a little different as I'm having the chemo first, but that was my choice on recommendation of oncologist. Surgical booking did book it but then made it 'not ready for surgery' til chemo finished. Plastic surgeon will decide what type of recon is best, that's their area. Write down all your questions before you go so you don't forget to ask anything, and make sure you get what you want. I was originally just going to have double mastectomy as I didn't know any better, but my breast surgeon (who is lovely) said if I had a mastectomy, he would work with his friend the plastic surgeon to do a nice reconstruction. I haven't at any point been told there is anything I can't have because I'm a public patient, I hope you get whatever you're happy with. You deserve only the best after everything you have already been through. Big hugs Kate x0
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@primek Hey Kath! Yes I had radiation treatment 5yrs ago on that breast, maybe thats why? but im sure things will be clearer on thursday after talking with the plastic surgeon.
@KatyJoy I'm in Victoria too, funny you say that about your Surgeon, mine is lovely too lol, and he works closely with the Plastic Surgeon. Ive been seeing him now for 5yrs. Im quite sure I could have had a mastectomy at time of the lumpectomy last year, but my Surgeon was adamant it wasnt necessary. Though once I finished treatment in December last year, my Oncologist and Surgeon work together and both recommend the mastectomy but have said it isnt urgent, that Im absolutely fine, no problems, all scans came back clear a few months ago. He did say if I go public it will be a waiting period for reconstruction as its not urgent. I havent heard of anyone being denied anything through the public system either. My surgeon is doing it this way so I dont have out of pocket as I just cannot afford the reconstruction any other way really. I definitely am interested for the meeting on thursday with the plastic surgeon, to try and work out what on earth im going to do. Yikes!!!0 -
Good luck with it all @melclarity, all we can do is go with the best advice we have at the time. It's hard when there are options because you think you don't want to make a decision and regret it later, but they won't offer any options that are unsafe. Good luck with the plastic surgeon, hopefully he has good news for you and you get a clear plan moving forward.0
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Hi, so sorry to hear of those who have had re occurrence of cancer. I had cancer last year, had a left mastectomy and immediate reconstruction done. all worked well. but as some of you have said hindsight is a wonderful thing. I wish I had gone with a double mastectomy when I was diagnosed, I did suggest it but was told it was extreme. so now I have the worry of 6 monthly or 12 monthly mammograms and if I get cancer again (and the chances are 1 in 6) more surgery, and at as I will be older, I may not recover so quickly. plus a reconstruction, they used my stomach tissue the first time so what can they use next time if they need to. and yes of course I want to stay positive and assume I won't get a reoccurrence but ...... hindsight....0
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There is always that uncertainty of whether we should have gone for a double (preventative) mastectomy. I had a left nipple sparing mastectomy with immediate silicone implant in August. Once the biopsy confirmed the cancer my GP ordered an MRI on both breasts. Fortunately, the right side was clear. The surgeon wasn't keen to take off the healthy right breast as I had the same risk as the next person in getting cancer again. Now I am taking Arimidex, that risk has lessened further.
He is also a breast cosmetic surgeon and I'm very grateful for the excellent job in matching the implant to my natural breast. But there will always be that fear that maybe I should have had a double mastectomy, but facing a single was overwhelming enough at the time.
I hope the next 7 days go quickly for you and you get some of the answers you need. Jane x0 -
Hi @sandyb where in Qld are you. I know we have had members in the choosing breast reconstruction group in Qld who have at least had an expander inserted at time of mastectomy. Is that maybe an option? A question worth asking. I don't want to stress you too much before your surgery. I know in Cairns the wait is quite long as a public patient for reconstruction, however if you are prepared to wait you can certainly have the reconstruction in the public service.
Hugs to you.
Paula xxx0 -
Jane, what you said really helped me, thank you! Ive a recurrence and whilst 11 months post chemo am faced with a Mastectomy for prevention. My Surgeon wanted a double...but my right breast is fine always has been. I had the BRCA Gene testing and it was negative...the Geneticists said a single Mastectomy is only needed and not a double. This helped me sit in the thought of a single as well. I dont want regrets at all...but in my gut it says why fix whats not broke...Hopes and Dreams said:There is always that uncertainty of whether we should have gone for a double (preventative) mastectomy. I had a left nipple sparing mastectomy with immediate silicone implant in August. Once the biopsy confirmed the cancer my GP ordered an MRI on both breasts. Fortunately, the right side was clear. The surgeon wasn't keen to take off the healthy right breast as I had the same risk as the next person in getting cancer again. Now I am taking Arimidex, that risk has lessened further.
He is also a breast cosmetic surgeon and I'm very grateful for the excellent job in matching the implant to my natural breast. But there will always be that fear that maybe I should have had a double mastectomy, but facing a single was overwhelming enough at the time.
I hope the next 7 days go quickly for you and you get some of the answers you need. Jane x
Hugs Melinda xo1
