Decisions, decisions.

Hi, I’m due to go for LD flap op in may. It was to be with implant but on we’d I got node biopsy back and as I now ( unexpedely apparently ) am getting chemo and rads it means implant to follow. The doctor said I can have op and then chemo which I thought was fine … Kinda following the plan in my head, or I cld reverse it and have chemo, rads then reconstruction in full… Being the indecisive person I am I’ve now started to wonder what would really be best… Or am I just trying to put off the op/ treatment.

Any advice, comments or personal stories would be appreciated.

Wishing neither was an option. Xxx

Hi Elli, sorry you have to join this exclusive club no one wants to join, and that you are now faced with big decisions to make very quickly.

If I understand correctly (I may not) your current plan is to have a mastectomy and immediate LD flap reconstruction and then, because you have to have an implant added later.

Is the new plan that you COULD have your chemo and rads first, then all the surgery at once? Or is it that you have a mastectomy now, then chemo and rads. and full recon deferred?

My story is that I had my chemo first (no choice, my tumour was enormous) then a mastectomy with immediate LD reconstruction, no implant, and then radiotherapy. That was all completed almost a year ago, and now I am fine.

For me, the advantages of this approach were:

I had longer to get my head around what was happening, and to make a better informed decision over reconstruction

It was one lot of surgery, albeit with a week in hospital (I live alone so they kept me a few days longer than average)

I left hospital with two breasts (shallow, I know, but it helped)

I started my chemo from a position of full strength - though obviously went into surgery chemo affected.

These are big decisions to make, and there is no right answer, except the one you decide upon. I wish you well in your pondering and deciding.

Just BUMPing this up so it doesn’t get lost on page five!

Thanks rev cat…well it seems every time I attend the clinic I get told something different.

When I was told it was reconstructive surgery, I had the 3options… As if they were my choice to make.

I went for the tummy one… Then was told I didn’t have enough fat to make a significant breast. ( actually think I have plenty lol )

Ok so I thought LD… Last week I was told if I needed therapies I’d get the LD bit and implant later… I found out we’d I’ve to get both so I thought it was this option but my breast doc also said I could postpone the op till after…

So I went today… My lovely plastic surgeon said best option is a tissue saving implant… Therapies and then LD flap. if I still want it.

Think I’m quite pleased with this as I will have a boob… I will be lopsided but it’s a quicker recovery time.

I get myself worked up about decisions then they change the goalposts anyway, I was beginning to think I was going a bit mad… But no… Looks like it’s something I need to get used to lol

Elli that sounds a bit clearer for you!

I theoretically started out with recon choices but like you was too slim for the tummy one (eh?!) so it was LD or nothing. My PS wouldn’t use implants pre-rads, but I know some others are fine with them.

Anyway, you got a plan and that’s what matters. Hope you get a brill result.

Hi Elli
just one word of caution… I found out this week that my surgeon won’t do my next operation (LD reconstruction) until a full year after radiotherapy, so I still won’t be physically recovered (from primary BC) even 18 months after my diagnosis.

So make sure you understand the timescales of all the options too, even if they sound like the same thing just done in a different order!

hi ladies
i have just been reading you post about having recon same time has you mx, and i think its better waiting a whole year ist before having recon, i had it sraight away which is what my surgeon required, but i had nothing but problems, and with having ibc, i read after its not recommended to have straight away, to late now though now i am stage iv.
all the best to you.
lorraine x x

Thanks Ladies…

Lollypop… The decision was taken out my ands regarding the surgery… After all the appoints and discussions the results dictated it but I was miffed that I’d ad all the stress worry, research etc when they would likely have been better doing a node biopsy and then give my one option lol… Strangely tho I felt pleaded because it does mean I have time to think about what I want.

I asked how long after rads they would do it, just to get a timeframe in my head and I never got an answer… They couldn’t say.

Alice cliche… I am grateful that I can now defer this decision… Keep the implant and get other one done or fixed or go for recon. I have had loads of problems with my node biopsy wound so I can imagine it can’t be good dealing with more than one issue…

Thanks again

Eleanor xx

Hi Elli. I do feel for you and at the start it’s very hard to even know what questions to ask. Sometimes the doctors don’t have a clear timescale themselves until they see how you respond to treatment, but other times getting them to tell you anything is like getting blood out of a stone.

My story is that they put me on tamoxifen before surgery; like RevCat my lump was big and they wanted to make it smaller, but they wouldn’t tell me how long this was going to take, and even though it wasn’t getting smaller. I was going nuts with the uncertainty, I felt they were just stringing me along waiting and waiting, every appointment I thought I would get a date for surgery but they just poked around and ho-hummed a bit more, then in the end I told them clearly I was fed up with shallying around, I just wanted to get on with it! But I wasn’t looking for recon so didn’t need a long slot for surgery and they got me in very quickly once I managed to make their mind up. My surgeon has a very strong “conserve every breast” ethic that I don’t share; I could still feel the lump so as far as I was concerned I still had cancer and they were just p**ing around.

If you are looking at reconstruction, it’s good to have time to consider your choices; it is a real pain when they only give you half a story and then move the goalposts. Let us know how it goes.

Thanks Hymil,

Think that’s the problem… If it all depended what was in the lymph nodes then why not say… These MAY be your options. Depending on biopsy…

I think it’ll take a bit of getting used to, the information or lack of it lol.

I was offered no recon as an option… And if I reject the skin sparing implant thing hen that’s how it will end up… Option 4…

Thanks for your reply I will definitely be on and keeping up to date… Xxx

I am a bit miffed by all of this. I am having a mx with immediate reconstruction. I’ve been told I will then have chemo and rads then hormones for 5-10 years (I’m 38). Why is recon not an option for others and why is it ok for me when I have to have other treatments afterwards? All I know about my BC at the moment is its invasive and in 2 separate sites on same breast. Lymph nodes look clear but they take 2 anyway. I’m also worried about it spreading as its 4 weeks tomorrow since dx and still no date for surgery.

Hi ladies, I’m sorry this is proving so bewildering for you all. There are all sorts of reasons why different people get different advice, some of it being down to the skills and facilities of the local hospitals, some of it down to the views of individual surgeons, and most of it down to the fact we are each unique.

Doodles, even if the lymph nodes look clear on a scan they will take some for biopsy (sentinel nodes) to be sure there are no tiny weeny bits of cnacer lurking there which wouldn’t show on a scan. Better safe than sorry, in my opinion.

My tumour was bang in the middle of my breast, close to the nipple, which meant that even though my (neo-adjuvant) chemo worked brilliantly in shrinking it, I still had to have a mastectomy. It was precisely because of its location that I was a good candidate for the kind of reconstruction I had. I think that sometimes we get confused and upset when we try to compare ourselves with other people, because there are too many unknowns. Whilst we are all ‘in the same boat’ we aren’t all the same.

I really hope you all feel more at ease with your treatment plans soon. Once the decisions are made it does get much more copable.

It is frustrating.

I think most important thing is being diagnosed and on the path of treatment…

After that it’s patience and flexibility lol… I think it would have been less frustrating had someone said in the beginning… It’s an ever changing situation so be prepared for that… Options could change etc…

I’m just having a bad day today, been teary for most of it. It’s just so hard to believe all this is happening when nothing is actually happening! I think I will maybe begin to accept it and get my head around it once my ball starts rolling. Sorry for whining!
Doodles x

When I was first diagnosed, I found Sunday’s really really hard… Crying Through most of it.

I think it’s ok to cry, for whatever the reason in your head… Your going through a rubbish time, with a lot to process but at the same time… Nothing is really happening.

Big hug… Xxx