Recurrence .....looking for reassurance

Hi
I only posted on here a few weeks ago reassuring a lady who was triple neg that i was the same as her first diagnosed in 2005 and am absolutely fine 4 years on only to find last week that i have a recurrence picked up on my annual mammogram, this one is 1.5cms. My history is… diagnosed may 2005 grade 3 triple neg 3cm. Sentinel node biopsy done with 3 nodes removed all clear and clear margins. 6 mths FEC and 4 wks rads. Good news… I thought. Life was great, daughter passed 3 a levels this week and going to Uni. Great job, good money.
I now feel numb, terrified of the future as I seem to be a triple neg statistic where recurrences often occur around 3 yrs after treatment.
I see my surgeon on Monday and I’ve already been told I’ll have a mastectomy this time and all nodes removed. But that there is a strong possibility he’ll give me chemo again (Taxotere).
I desperately need to know if any other triple neg ladies are like me and had mastectomies second time around and how many years on they are now?
I pray to God this wont happen to me again or that I develop secondaries.
I’m so desolate. Please help.

Bev x

Hello Bev
I’m an a slightly different position to you, having a recurrence of e+ bc 12 years after original, when I was 38. I don’t know enough about triple neg to offer support in that way, but there are plenty of people on here, as you know, who do and they will soon respond, I’m sure.
What I can offer is support and send my love to you. I’m some way into this, being a few days off starting chemo and I know it has been another roller coaster ride, but feels very different to first time around and is terrifying at times - I had mastectomy first time around and the cancer has mutated, so the picture is different this time.
In other ways, in a similar position - career flying, daughter (at 21) got her head sorted and got a place in Uni this week so on some levels life is sweet, feels like the rug has been pulled from under me.
all I can say is, read, keep checking things out and keep posting.
I’ll be thinking about you and whatever support I can offer is yours. Hope you find some ways of getting through the weekend and some relief from the worry
take care - sending love,
monica xx

Hi Bev

I had a mstectomy and axilla clearance first time round with AC before surgery and then taxatere afterwards.I was OK for 3 and a half years before further tumours in my neck, shoulder and chest wall.

I think both patterns are usual patterns among triple negative women. Hopefully all your surgery and chemotherapy will clear up all the cancer cells and you wil be clear for a good long time.

I hope that as you go through your treatment plan you will have nice flows of nostalgia reminding you of good times.

It will get easier as time passes and you will be able to recall those old moments of fear. Good luck!

Hi Bev, I too no nothing about triple neg…must ask next time I see ONC. I had 5.5cm tumour, chemo called CHOP which reduced it before surgery then Mastectomy. But that was in 1989. Then in 1999 found it had spead to bones…Now having chemo and had other treatment since then. I remember the being scared. Was not given good prognosis but continue treatment hoping it will continue to do its job. Love ScottishlassX

hi bev,
i know only too well how you feel thinking you are over it, getting your life back in order, having days where you actually feel happy and not thinking about cancer, and then wham bam thankyou mam it’s back again, i had 16yrs free first time round but iv’e made up for it since, 1st time lumpectomy, chemo, rads. 2nd time mast, aux clearance, recon and chemo. 3rd time 17mnths after 2nd time in other side found in lymph nodes, so just out of hospital after aux clearance and waiting to find out what is nxt prob chemo and rads.i have more scars on my body than an oxo game. i’m still feeling pretty numb with it all, but it is amazing how you put your face straight to the outside world and just get on with it, nothing else for it i’m afraid.
hope you get all the help and support you need
lots of love
reneexx

hi bev

i was diagnosed with 1.9cm grade 3 triple neg no nodes in may this year after annual mammo 3 years ago i had 1.3cm grade 1 ER +ve no nodes in other side… this is a new primary.

have now had wle on both sides and snb… treated with rads and tamox for first one and this time on chemo… epi-cmf then rads.

no mx but seeing genetics clinic in 2 weeks to find out more and may be recommended in future.

i too worry about what the future holds but with time i have gotten abit more used to this diagnosis and things are more manageable although i am very realistic about having TNBC and the future.

good luck

Hi

Thank you all very much for your replies…its great to have people to talk to in similar situations, we’re all very special people. I’ve just come back from seeing my surgeon, he’s as devastated as I am! He said he would never have expected this to happen as my histology showed such excellent clear margins and no nodes. I was 48 at the time. He did a bilateral reduction for me also in dec 07 where he sent the breast tissue to pathology, that also came back absolutely clear. He examined me today and said this is very small, caught very early and seems to think this has just popped up from nowhere as it would have been highly unlikely that it was missed by radiotherapy. And he couldnt imagine that it has grown from a previous cell because of the very clear margins. He then said he thought it was possibly because my breast tissue is very unstable.
he mentioned doing sampling again of the nodes but I have told him I want axillary clearance this time for peace of mind. he is an excellent surgeon, probably the top breast surgeon in Wales and i feel much more confident today after speaking to him.
So I’ll be going in gor surgery in about 3 weeks, will keep you posted.

Love Bev xx

i really hope you all don’t mind me asking this but i’m so worried… i had my WLE in march this year. (2.8cm IDC, grade 3, 8 disease free nodes) DCIS extended to deep margin so i will need radiotherapy once my chemo is finished (FEC x 6).i noticed some of you had cancer in your nodes after originally having clear nodes.

i’m wondering how these were picked up? did you feel them yourselves? what did they feel like?

ive got a few rubbery lumps that are movable in my armpit (like baked beans) on my lumpectomy side i think they are lymphnodes. ive also got a few along my sternum. ive had an MRI done today but now have to wait two weeks for results.
my BCN says they are likely to be reactive nodes to the initial surgery in march, but im kind of trying to prepare myself for the worst that they are cancerous. what did yours all feel like?
hope you don’t mind me asking…

Bev I do understand and hope all wıll be well for you for a very long tıme.I am trıple neg and ıt wıll be 3 years ın October since my dx.I was grade 2 wıth wıde clear margıns and no lymph nodes infected after samplıng.I had 4xfec and 4xtaxotere and was 62 at dx.Others fınd ıt hard to understand my constant terror of recurrence,only other trıple negs share that helplessness once treatment ıs done.But honestly Bev ıt does sound hopeful for you and there ıs every reason to thınk it wıll be totally wıped out thıs tıme.
Love and luck,Val xx

hi redcell,
it doesn’t seem to matter how long you have to prepare yourself, if it turns out for the worse then you will be totally devastated, i know i was, mind you i think it is best to think the worst then if it’s good news wow! celebration time. i really hope it is good news for you.
as with all lumps they should be checked out by your breast care team, i had an uplift in march 09 and have had no end of problems, the wound just would not heal, it still hasn’t healed completely.
then on june 10th stepped in shower and found lump straight away under arm on good side where i had the uplift. went straight to doc then to hospital a few days later, it took a few wks of ultrasound and fna biopsy but finally got result the cancer was back, so had to have comlplete round of tests and then finally auxilliary clearance, so comletely baldy in both arms now, got it done on wed and out with drain in on fri. at moment just taking it easy as i don’t yet know what is planned for me but going tomorrow to have drain out and i feel pretty sure as triple-neg i will have more chemo, so my mind is all over the place just now, i know i have talked on a bit i didn’t mean to, but just goes to show how cancer cells have pretty much free reign to go where they please. i think you are doing the best thing by having it all checked out.
thinking about you
reneexx

hi bev,
i’m really glad you have a lot of faith in your surgeon i like mine too. mind you i seem to hsve known them for years, mabe i’m just familiar with them.
i’m glad your news is better than it could have been and i think you are wise to have full clearance.
good luck with your surgery and any other treatment that may be planned.
love reneexx

Thank you all for replying, your comments are really appreciated and i do feel a bit more at ease now. i hope we’ll all be here in 10 years (or even 20!!)to look back on these discussions and smile!

Good luck and lots of love to you all xxx

Hi all
Had my mastectomy and ANC on Thursday afternoon last week, came home on Saturday feeling really well. Pushing myself through the inevitable pain threshold to do my physio on arm, quite painful but has to be done!
I was surprised and disappointed to learn though from the Breast Care Nursing team when in hospital that now I’ve had a recurrence after 4 yrs, the risk of another recurrence in the remaining breast rises by 1% each year! Which means that in 10 yrs when I’m 62 I have a 10% risk of it returning…I feel very uneasy about this.
I thought that the risk would decrease as time goes by.
So if I do have another recurrence in the other breast, it will mean another mx but what happens after that if yet another recurrence occurs? What is the prognosis then? So many “what ifs”.
Anyway results this Thursday so will know more about any future treatment if needed. All I know now is that the size was 1.45 cms.

Love Bev x

glad your op went well Bev.

i hadnt heard of the 1% a year thing… i was told mine was a recurrence as it was a new primary but as it was only 3 years ago and is in the other breast its maybe concerning me a tad… as i already knew my risk of recurrence is around 20% over the next 10 years but as im triple negative and have a grade 3 tumour this time its more likely to recur within the next 3 years yet my first one ER pos grade one would be more likely to recur over a long period of time.

ill be thinking of you on thrusday when you get your results… fingers crossed its good news.

lulu x

Thanks Lulu
Its all so confusing isnt it, especially when Triple neg like us. My breast care nurses always play down the TN thing, they say there have been thousands of women in the past with TNBC who didnt know they had it as it wasnt labelled then, and who are still surviving.
I’m just keen to know tomorrow whether this is recurrence or new primary. Its strange because first time I had 2.9cm lump grade3 no nodes and excellent margins, lumpectomy, chemo and rads (2005). Then in Dec 2007 I had the bilateral reduction to even me up to a B-C cup…lovely and my surgeon even sent off that breast tissue for testing too and it came back all tissue clear, great news and even more encouraging.
So I cant understand how this could be a recurrence if there was nothing there. It was right under lumpectomy scar though so is it more likely to be?
Also is it better to have a local recurrence or a new primary, prognosis wise?
Love Bev x
PS LOVE the hair!!

prognosis wise im not sure as the medical profession seem to talk either in terms of surviving or of relapse… and to me relapse could mean anything from a new primary to recurrence to secondaries.

i think many of the risk assessment tools didnt take into account the TNBC although they will factor in the fact that hormones treatment wont make any difference… they also dont seem to account for recurrence or relapse in these tools either… just on what you have at that specific time… i would imagine though that the chance of further recurrence would be more common in people who have had any kind of relapse as they prob have more cancer cells in their body for a longer period in total than somebody who who hasnt had a recurrence at all.

also i guess a new tumour in the same place could signify a recurrence from microscopic left over cells from your first BC which were maybe too tiny to show up or that werent in the part of the sample they examined… although with chemo and rads to the area and a further surgery you would think it was completely erradicated… however something made the BC start at the very outset, that is: it hasnt been there since you were born so perhaps that area is just more at risk of altering within your own body… if that makes sense?

and the ‘hair’ was a gift from a friend and i love it too LOL

Lxx

Thanks Lulu for your comments, I totally agree with what you say about risk assessment tools. My BC nurse explained it by saying that in a woman’s lifetime (currently 86 yrs) there is a 1 in 9 chance of getting bc. My chance now since recurrence is 1 in 8
but obviously not over 86 yrs as I’m 52!
I think that puts it into perspective.

Well anyway it was all good news yesterday when I went for results. Axillary clearance 8 nodes removed - all clear and 1.5cm lump. But turns out this one is ER positive! So I’ll be given oestrogen therapy this time, thank goodness. Surgeon said this confirms his thoughts that this is in fact a new primary!
Seems he was right about my breast tissue being unstable, the fact it came back in that same breast in the same spot. After all nothing has ever shown in the other breast over the last 4 yrs.

As far as chemo goes, he had lengthy talks with the Onc for 2 days prior to my appointment and they are still unable to decide whether chemo would be beneficial - apparently I’m so borderline, the increased risk of recurrence if I dont have it would be something like 1% (or possibly less)so they are going to make an appt with the Onc for 3 wks time where he will explain in detail all the pros and cons and the decision ultimately will be mine. So it could mean no further treatment…yippee!!
I feel so relieved I feel that a huge weight has been lifted from my shoulders, who would have thought that you can “celebrate” a second diagnois of bc??!
I even feel more positive going forward this time than last as the seemingly “dodgy” breast has gone,nodes gone (but clear), ER+ and I can have tabs to help prevent further recurrence… and I can say goodbye to the triple neg thing!
Take care
Love Bev x

bev that sounds very similar to me but in reverse my 1st one is ER pos and 2nd TN… i would say that you can say good bye to TNBC per se its just means that you have a slight risk of recurrence of either type.

i was only 3 years into my tamoxifen when i got the TNBC so i have been advised to continue to take that for another 2 years after i finish my TNBC treatment to prevent recurrence of ER pos.

hope that makes sense but its may a good question to discuss at your onc appt… i had a massive list of questions to ask mine and was in the appointment for 90mins!

anyway im soooooo glad that it was such a positive result this time for you and your right it is strange to feel ‘lucky’ when getting diagnosed with BC but i felt exactly like that first time as just had WLE rads and tamox.

Lxx

Now almost 4 weeks from having my mastectomy and ANC. As posted previously all 8 nodes were clear again and have just had my visit to Oncologist to discuss the benefits/non-benefits of chemo this time. My surgeon had said that as this new primary and now ER+ instead of previous ER-, I could have Arimidex but couldnt come to a definite conclusion after discussions with Onc, whether chemo would benefit this time.
Anyway thought the Onc would clarify this for me but have come home more confused and unable to make a decision based on the info she gave me.
She said i would only have a 2% benefit of having chemo this time (Taxotere)and I have a week to let them know my decision. But what I can’t understand is:

  1. 2% of what? She said they don’t have these figures as all stats and percentages are based only on patients having bc the first time .

2.She said that as this is new primary it has to be treated as new cancer so why arent they as insistent on chemo as they were first time around?I didnt have the choice then, I was told I had to have it.
Chemo is systemic and kills off any cancer cells that may have travelled through the bloodstream from the tumour and settled elsewhere so why can’t they be sure that this hasnt happened this time?
I dont know how I can make a decision based on these vague facts. Obviously if they thought chemo was a necessity they would be telling me I would be having it but I dont understand why its different this time.
Am waiting to hear from my BC Nurse as she’s far more helpful, but in the meantime, could anyone help please thats been in the same boat??
Love Bev x

Hi Bev

I havent got loads of advice but I think im right in saying that chemo works best on er- tumours. I think hormone therapy for node negative er+ tumours is just as effective. I dont know about arimidex, but i know my bcn told me that tamoxifen would do as chemo would and mop up the stray cells.

I was told that chemo would give me a 2% less chance of reccurrance in the next 2 years, but to remember that 1% of people die from the chemo alone.

I was dx feb 08 age 34, with 2.1cm grade 3 no nodes, er/pr 8/8. I had rads, zoladex and tamoxifen.

All the best with your decision.