Recurrence

0608hev

I were first diagnosed in 2011 and had lumpectomy followed by chemo and radiation I then had a local recurrence in 2015 and had a double masectomy and reconstruction followed by more chemo and then daily letrozole  tablet I have just been diagnosed with another local recurrence in my reconstructed breast I have had surgery to remove the lump and are awaiting the results. I am wandering what sort of treatment I will have as I have been told different things .It sounds crazy but I almost want more chemo as cancer has returned twice with chemo and it scares me to think what could happen if I don't have chemo.
Anyone been in a similar situation.

kmakm

Oh dear you are having a rotten run with this, I am so sorry. What a bugger of a disease this is. I'm sorry I can't help you with your question. However having just had a reconstruction myself I am curious as to where yours has occurred. If you don't mind me asking that is. I queried this with my breast surgeon last time I saw him and he said recurrences in reconstructed breasts (I had a DIEP) can occur in the scars, the chest wall, the fold of tissue underneath the foob, just under the skin and the armpit. Quite a long list despite all we do to eliminate the risk.

Zoffiel

Oh, what a nightmare. I had a recurrence 10 years after the primary. So, over a period of 12 years lumpectomy, Double mastectomy, reconstruction, repositioning/repair X 4, AC chemo, TC chemo, rads, tamoxifen, Letrazole, Anastrozole,  auxillary clearance, ovaries out....not necessarily in that order. What do you have to get free of this shit?  I,  too, wonder what happens if I have another non metastatic event, how many potential 'cures' are there? I really struggled to commit to the last chemo as it obviously didn't work the first time. Or maybe it did. You may be a rare enough breed to qualify  for some sort of trial,  depends where you live. Best of luck, I'm looking over my shoulder (or under my tortured armpits) all the time too. Marg xxx

melclarity

I too had my first diagnosis in 2011 and a recurrence in 2015 same breast, same spot in the scar tissue. I did Chemo and 1yr after in 2017 I had a single mastectomy/diep flap reconstruction. I am so sorry to hear of what has happened, I know how I felt after my last bout, speechless. Im currently going on 3yrs clear so I too wonder how they will proceed. Keep us up to date how your pathology comes back. Thinking of you x Melinda

j9k

Hi @0608hev. This BC just doesn't give up sometimes. I had BC in 2005, then again in 2009. Chemo both times and rads in 05. Tamoxifen then Zoladex. I thought I was done then in May another big dcis. I had a left mastectomy in 09, right side mast in May. I didnt do reconstructions for a range of reasons. My surgeon is confident I won't need further treatment as there were no nodes involved but I find out this week after her case conference with oncs. The thought of chemo again caused me nightmares but so does the thought of no further treatment. I am terrified that surgery isn't enough. Your doctors will consider type, any possibility of node involvement and other factors in treatment decisions. I have read many wise words from other ladies here to the effect that as difficult as it is not to worry about whats going to happen, to try and wait until you have all the info. It's not easy to do.    Have your list of questions ready for the doctor when you see him/her next. Do you know when you will have the full results? Do you mind if I ask who has been giving you the different information? It took me awhile to come on here but these ladies are amazing. So much wonderful support and good advice.  Keep in touch.   

Sister

I'll admit that I'm still undergoing treatment for an initial case of bc but the thought of recurrence scares me so much - I honestly don't know how I would cope going through it again.  I'd do it, no doubt, but I'm not sure what sort of mental mess that would result in.  You women who have done it, amaze me.

Kiwi Angel

@Sister I’m the same as u - initial cancer and I’m also with everything else u said - the thought terrifies me and will forever be in the back in my mind. 

kmakm

@Sister @Kiwi Angel I'm the same. On the one hand there'd be less fear of the unknown. On the other hand there'd be fear of what's to come as you do know... My breast surgeon says it's very common to worry about a recurrence as your active treatment ends but that it lessens over time. I've thrown the kitchen sink at my BC; if it comes back I'll be ROPEABLE!

melclarity

Yep i threw everything at it too had aggressive treatment but it came back.  Ropeable didnt come close...wasnt less fear as it was worse and it happened in between my yearly visits. All you can do is what you can. I just live now no point wasting my emergy on what i dont know. X

Kiwi Angel

@kmakm I’m the same as u - I even had chemo when I was essentially cancer free so I’ll be mega pissed if it comes back but I know there are many people like @melclarity who have done the same as us and the bastard came back!!  It’s a fear we will all live with every day of our lives unfortunately 

Eastmum

@Kiwi Angel @Sister @kmakm - I read this with the same feelings as you! Going through treatment for the first time, and yes, doing it all when I'm essentially cancer free! The thought of doing it again, later down the track is horrendous! But then I guess our resilience kicks in when we need it most and the thought of simply giving up is even more horrendous. One of the most encouraging things for me, is that there's still so much research going on and so many advancements and new, emerging treatments all the time.

Kiwi Angel

@Eastmum - scary isn’t it - all I can think is I have done everything I can to stop it coming back, but then so have many other ladies. It’s something we will all be fearful of for the rest of our lives 

melclarity

Absolutely, we all do everything we can to make sure to the best of our ability that it's not coming back...so it's not helpful in fact it's insulting...when Society harps on diet, exercise or anything else to shield us all from recurrence...ummm if that were the case we wouldnt get it in the first place and I mean majority of people. My first diagnosis was DCIS and they classify that as pre cancer so radiation for 6 weeks and surgery and tamoxifen 4yrs. 2nd diagnosis I had chemo but no rads as cannot have it twice. I too was deemed cancer free so chemo was added insurance...hard to not be cynical with your own experience sometimes. One step at a time.

Thinking of you @0608hev how are you? 

Kiwi Angel

Hmm @melclarity. Wish it was all down to diet. Would be happy to eat kale for the rest of my life if it meant no more cancer or chemo. Unless u have walked in these shoes u have no idea, unfortunately I think it’s all just the genetic jackpot. 

melclarity

@Kiwi Angel yes me too, I think thats more it than anything unfortunately, genetics.

Kiwi Angel

@melclarity as like most women no history in my family. The only blessing is that I have to have a cancer it was “outside” the body and can be cut off and the support for breast cancer is amazing.