New here - about to start treatment for recurrence

Hi MotherofCats and a warm welcome to the forum. Great to have you ‘on board’ as I think you’ll be very helpful for any of us who have a local recurrence. And I hope you’ll find this a great place for support and shared experiences. May I ask what type of breast cancer you had initially? In my case (see my profile if you want the long winded version!) I had strongly oestrogen positive IDC. I’ve managed to get to just over 5 years since diagnosis with no evidence of disease and am still popping the Anastrozole pills. But I’m very aware that my type, though very treatable, has a nasty habit of popping back for a second bite, often after 5 years and more. If this happens to me I’d welcome a local recurrence rather than metastatic, for obvious reasons. You’re an interesting case as you’re on your second local recurrence but no spread, which I would regard as very good news in the bigger scheme of things! Love and hugs, HFxx

Hi HappyFeet1  and thank you for your response. 

In answer to your question,  I had oestrogen positive IDC too, with a couple of lymph nodes involved so had node clearance. I did 6 years on tamoxifen before my recurrence. Have now just completed 10 years on anastrozole.

That's the first I've heard that this type has a habit of popping back up, I thought I was just unlucky! I do agree that a local recurrence is way better than metastases in the grand scheme of things, but I'm having trouble seeing the bright side right now!

Xx

Ah, sorry, I expressed it badly MotherofCats ! Definitely a sh** deal to have 2 recurrences and It must also seem all the more daunting when you’ve already been through the treatment regime before and know what’s in store for you. I think it’s my way of preparing for the possibility of local recurrence in presenting it to myself at least as preferable to finding it’s come back but already having metastasised (not sure if that word even exists). But yes it’s becoming more evident as more folk survive breast cancer and more statistics are gathered, that hormone positive beasties can recur quite a way down the line. Of course it’s useful to bear in mind that, as far as I’m aware, the majority don’t, but it’s a bigger percentage than I’d realised, that do recur. Most statistics quoted seem to be for survival rather risk of recurrence. I’ve asked to stay on Anastrozole for a further 2 years as there’s evidence that this is beneficial. Otherwise I’d have automatically have been taken off it once I’d had 5 years worth, as I didn’t have any evidence of lymph node involvement from scans and sentinel node sampling. Also, I discovered last year that I carry a pathogenic gene that carries a moderate risk of breast cancer. Thankfully not high risk, but more than the general population. Apparently it’s likely that’s why I got breast cancer and also gives me a higher risk of recurrence. Hence my request to stay on Anastrozole. Sorry for the ramble! Good luck with your treatments, sorry you’re probably boarding the chemo train for the third time. Love and hugs, HFxx

Hi MotherOfCats, so sorry I pressed wrong button and accidentally reported post. Didn’t mean to, typing to quick and it popped up and bang had already caught a button. 

Carrying on from my mistake, just wondered if you were HER2 positive too? I had grade 3, stage 3 IDC with lymph node involvement and was diagnosed triple positive as had oestrogen and progesterone positive figures too. I have had the whole lot, surgery, radiotherapy, chemo, targeted treatment (Phesgo) which I finished today, and hormone tablets (tamoxifen). I am worried about reoccurrence despite having everything but I know in have given it a shot. Have your re occurrences been the same type and in the same area? 
Wishing you all the best Andy have my fingers crossed you don’t have to go through chemo again. 
Hugs from cuffcake x x x x x

Hi 

No, not HER2 positive or progesterone,  just oestrogen. 

Easier to say than do, but as long as you have done everything you can, you can't spend the rest of your life wondering and waiting for a recurrence that may not happen. It does get easier as time goes by, I promise!

Despite having a mastectomy, both recurrences have been in more or less the same place. I may have been unlucky because my tumour was more in the chest wall than the breast, in fact initially I had chemo before surgery as it had grown into the chest wall.

The first recurrence was the same type, I haven't had all the results yet for this one but it's looking likely.

• Thanks for your good wishes, I should find out the treatment plan tomorrow afternoon. Well done on completing all your treatment and good luck going forward xx

Hello Motherofcats,

I'm so sorry you find yourself with a second local recurrence. It really is so unfair.  I hope all your treatment goes smoothly and that this will be the last that you need .

I too have recently had a local recurrence for a triple positive breast tumour.

Unfortunately I hadn't quite completed my  treatment of herceptin when I found the offending grainy lumps along the scar line.

I had a mastectomy at the end of October and my only treatment now is a change of hormone suppressor to exemestane and continuation of zameta.

Fortunately I had negative lymph nodes on the biopsy  of the local recurrence and also original sentinel node biopsy and so haven't been given any systemic treatment, Although this is positive in one respect, it does make me feel that it may pop up somewhere else in the near future,

Although I am naturally a very pessimistic person , since this recurrence, I am better able to just take each day as it comes and am leading a fairly normal life with the odd flutter of anxiety..

I wish everyone here all the very best with any treatment ,and send love and hugs to all

Hi, sorry you’ve had a rough time. I too had bc in 2009, TNBC, then a hormone positive one in 2017 and TNBC again in 2022. I wondered if you have had a genetic test. I didn’t until after the 2022 treatment had finished, as I didn’t meet the criteria previously. I was 48 at the first cancer and am 62 now.

i finally had genetic testing and found I have the BRCA 1 gene, which gives some explanation for my 3 cancers and allowed me to take action to reduce the cancer risk for the future. My daughter was also able to be tested and thankfully, she tested negative.

wishing all the best x

Hi, yes I was offered genetic testing after my first local recurrence, and I do not have any of the known genetic markers. My daughters will get additional screening because they feel there is probably some genetic component involved, just not one we currently know about.

I do what I can to reduce my risk, I follow a mainly vegan diet (can't totally resist chocolate and occasionally cheese tho!), don't smoke, rarely drink, healthy weight etc etc.

Hoping you have no further recurrence.

Quick update from yesterday's meeting with the breast surgeon- the tumour has grown down into the chest wall and is currently technically inoperable. 

Plan is to treat with targeted therapy (palbociclib) and hormone therapy (zoladex + letrozole I think) to shrink the tumour before surgery which will apparently involve removal of bits of rib and a free flap reconstruction at a specialist hospital under a different surgeon as the procedure is complex.