Forum Discussion
Bilateral / Prophylactic Mastectomy in Public System
Hi, I am new to this network and very much appreciate the insight and guidance shared.
On 27th June 2014, I was diagnosed with Invasive Lobular Carcinoma along with focal areas of LCIS in my left breast. There was no lump, no tell-tail signs and there is zero family history. My diagnosis came after a routine mammogram which lead to a core biopsy.
I live in rural far north Qld (with Cairns Hospital 1.5 hours drive away). I have been appointed a Breast Care Nurse, who has arranged a consultation appointment at the Public Hospital for next week 11th July (this will be the first time I meet her). My situation will be assessed and surgery and a surgery date scheduled.
With three children (youngest 8 yrs) my husband and I have had to console them daily, to reassure them that the doctors will "get all the cancer" - and yet they keep asking "what if you get it in the other breast too". Hence, for the psycholgical health of our family (and other reasons) we have decided to ask for a Bilateral Mastectomy. I feel very strongly about this decision. My question is :- how confident can I be that this request will be granted, within the public system ?
As a parent, I need to know that I have done all that I can, to ensure that I do not put my family through this emotional upheaval again ! I / We can handle the surgery, my time away from home and farm and family, the chemo if necessary and all the rest - we just CANNOT go through the discovery of cancer in the other breast, so feel it best to have it removed at the same time. Also, I have very large "ductile" breasts, with dense tissue (18 E) ... and know that the remaining breast will be a constant reminder of how vulnerable I am to getting breast cancer again.
Can anyone tell me if they have made a request for a bilateral prophylactic mastectomy within the public system - and if it was granted ?
Thank you in advance, Sue
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18 Replies
- Hi Sue, All the best with your request, I think a driving force with me was the psychological impact this has had on me. It was a big reason to want to get things happening. I guess I'm lucky I lIve in a major city as this properly means there are more services available. Think this May vary depending on where you live. Yep, good advice. I'm getting my things in order, well house mainly, to make my recovery easier. I'll let you know how I go. All he best x. Louise.
Hi Louise (Rosemary Louise) - best wishes for your surgery next month. I am very encouraged by your story - and that your decision was honoured by the surgeon. I am so very hopeful I will be given a surgery date before the month of July is through .... I shall keep everyone posted, on this blog. I imagine you will spend the time leading up to your surgery to get home (and work?) in order - and perhaps some restful periods also. Please let us know how you go, as you travel your journey x
- Hi sue, I was diagnosed with invasiv Dcis also with as my surgeon said had "disappointing pathology", so I decided to go for a bilateral mastectomy with implants in the public system. This was agreed upon and my surgery is coming up in August. I'll let you know how it goes. Louise.
- It sounds like you have your head in the right place. I was so mindful of the kids and the effect on them. My husband was a gem at the time. We slowly fed them the information along the way as each step happened. At the suggestion of my breast care nurse who I rang in a panic at diagnosis. She said tell them whatever you think they can cope with, but do tell them something as kids aren't silly and they overhear conversations and pick up on things. My husband was insistent we use the cancer word as he said they would hear it anyway. We were fortunate as we had friends and acquaintances who had had cancer before and are now well. He used then as an example and luckily the kids have coped well. They were 9 and 11at the time of my first diagnosis. They were a bit shaky at the time of second diagnosis (as was I !!) however fortunately all has been well. I kept to the story that we can cut breast cancer out and that helped them. A wise friend gave me the same advice as you mention, it's all about how you react to it. So glad you have been able to speak with others about their experiences. Nothing like hearing it from the horses mouth. My cancer was triple negative so not much choice re chemo etc and unfortunately didn't get the hormone treatment option. You may be lucky and not need chemo. I know there are some on this site who have not needed it. That would be great for you in regards to the farm and the fact you have to travel. Happy Sunday, I'm off to the beach with my son :) Paula x
- It sounds like you have your head in the right place. I was so mindful of the kids and the effect on them. My husband was a gem at the time. We slowly fed them the information along the way as each step happened. At the suggestion of my breast care nurse who I rang in a panic at diagnosis. She said tell them whatever you think they can cope with, but do tell them something as kids aren't silly and they overhear conversations and pick up on things. My husband was insistent we use the cancer word as he said they would hear it anyway. We were fortunate as we had friends and acquaintances who had had cancer before and are now well. He used then as an example and luckily the kids have coped well. They were 9 and 11at the time of my first diagnosis. They were a bit shaky at the time of second diagnosis (as was I !!) however fortunately all has been well. I kept to the story that we can cut breast cancer out and that helped them. A wise friend gave me the same advice as you mention, it's all about how you react to it. So glad you have been able to speak with others about their experiences. Nothing like hearing it from the horses mouth. My cancer was triple negative so not much choice re chemo etc and unfortunately didn't get the hormone treatment option. You may be lucky and not need chemo. I know there are some on this site who have not needed it. That would be great for you in regards to the farm and the fact you have to travel. Happy Sunday, I'm off to the beach with my son :) Paula x
Lovely to have your guidance appear on my two posts Paula - and I thank you for taking the time to address my queries and concerns, in both blogs (x)
You raise a most valid point - the necessity for chemo and the timing thereof. To be honest, I had not factored this in at all ... remaining hopeful that since I am ER+ and PR+ that I may be a good candidate for Tamoxifem, avoiding the chemo route completely. But of course, only the post-op pathology can determine that, as the bottom line.
I have limited my research to the BCNA site and a couple of others recommended by friends who have stood in my shoes (one had a single mastecomy done publicly - 3 months ago, the other a double mastectomy done privately - two years ago with the choice of no reconstruction ... both in Cairns). I am blessed to have sat and had a cuppa with both of these remarkable ladies (both younger than my 49 years) and feel quite well 'armed' with info and process and post-op bras and prosthetics.
When first diagnosed, I said to my husband - we cannot control "what is" - that I have breast cancer ... what we can control is our reaction to it, how well informed we are, and how we can contribute to the recovery process. Along with this, I would hope to include our control over what surgery is provided to me ie. the bilateral mastectomy.
Thanks Paula .... and have a lovely Sunday x
Thanks so much Sonya for the detailed information - all extremely valuable to me, given that distance and frequency of appointments must be factored into the equation. As mentioned in my reply to Louise (x) I would be more than happy to have the bilateral mastecomy and no reconstruction initiated for a couple of years - which would certainly be the case, going public (I have heard that a patient can sign a form pre-op requesting to be added to the waiting list for recon and that wait is currently 2 years).
Your mobility 4 weeks post op sounds the level I would aim for ... with improvements every week. Again, I thank you for taking the time (during your recovery) to detail your experiene - every comment from the ladies on this site is either stored in my "valuable info" mental file, or is felt as a "gentle cyber hug" at just the right time x
p.s. Realised I didn't answer two of your questions, Sue. Arm mobility is average. Can do most things but reaching up high is tricky and still not lifting anything too heavy. It will all slowly get better though.
I was a private patient.
Hi Sue
I see you've been getting great advice from women here (Louie is like a guardian angel). I started immediate reconstuction when I had the bilateral mastectomy. They put 150ml in each side during the op. After three weeks I had my first "fill" of 60ml each side and a week later had my 2nd fill. It is was very puffy and tender under my arms for the first couple of weeks after the op but that has settled. The first few weeks it was hard to sleep because you can't roll on your side and I find sleeping on my back for hours on end difficult. Generally, I now feel like I am wearing a tight strapless bra. It is annoying but all part of the process.
The 24hr period after the fill is more sore and I take medication, especially to sleep. During the day I don't notice it all so much. I should be finished my fills in about 4 more weeks then should be able to have my silicon implant exchange surgery at the end of Sep. So that is my light at the end of the tunnel and I know I won't always feel uncomfortable. I was really pleased to be able to have immediate reconstuction.
Being a distance from the hospital, if you go the silcon implant reconstruction path you'll need to consider whether you want to have more put in at each fill so that you don't have to go so often. I imagine this would be more painful. Something to discuss with your doctor of course. It also depends on how big you want to go. I was orginally 450ml each side (they told me this after the op), a 12B/C, so I thought I'd go to that but now that I'm quite used to being flat chested I'm not sure I'll go that far. Might stop at 400ml. Will see how I feel when I get to that. I am 270ml now. Love not wearing a bra (gave all of my underwire bras to my teenage daugthers). Just wear singlet tops under my clothes instead. Tried wearing a bra (with padding) but it is sore under the arms.
When I read your posts, Sue, it made me a bit emotional because it is such recent history for me that I was going through that same onslaught of emotional and physcial pain (those endless core biopsies are no fun are they?) - telling the children, making decisions, wondering what the bloody hell the pathology results woudl reveal after surgery. I know how you are feeling. It's awful. Hang in there. One step at a time. It sounds like you're doing all the right things and it is great that you are asking questions and getting informed.
Sonya
- I seem to be answering you all over the place today. I have replied to you in your Young women from Cairns post...although at 51 not sure I qualify as young anymore. I wanted a bilateral at the time of my second diagnosis (same breast). However as the Drs were keen to get me back into chemo they only did the single. I was told if I still wanted the other breast off I could have it removed at the time of reconstruction. I never wavered from my initial decision. I, like you had very dense breasts that did not image well. I am actually part of a study at the moment (or my old mammograms are) for young women with dense breasts. It will be interesting to see the results. Anyway it was about 2 1/2 years after my first mastectomy that I had the second and a bilateral reconstruction. I quickly got used to my one breast and prosthesis. I found the time between surgeries gave me lots of time to consider and research my reconstruction options. So glad you are finding some answers and support here. All the best for your upcoming appointments. Both the breast care nurses in Cairns are lovely. If you need to talk to them and they are busy you can leave a message and they will call you back. I found them invaluable in the early days when I had to figure out how to tell my children etc. Paula x
