Newly diagnosed triple negative

[Whitfield]

Amanda - how big was your tumour? Just wondering why you needed a full mx rather than just a limp removed? I had chemo first on a 31mm tumour which shrunk to nothing then lump off the part of Breast where the tumour was.mmthis tissue was clear of,Cancer but I did need full mode clearance as 4 out of 24 nodes showed Cancer scaring but no viable cells. Pamx

[Amanda10]

Hi Jackie
Sorry you have got to go through this a second time. I was diagnosed with tn in October . I have to have 8 cycles of fec d, masectomy and then rads. I've got two more chemo cycles to go. Having my treatment at university hospital in Stoke ..... Not nice but doable. Hope your surgery goes well on Thursday . Big hugs xx

[jackiek55]

Hi everyone, recently diagnosed with TNBC and had a mastectomy and SNB. Abnormal cells in one of two nodes, so scheduled for clearance on Thursday. This is a new primary for me. Had mastectomy for ER+ tumour 6 1/2 years ago, followed by chemo. Thought we were now in the clear but not to be. Won't know what treatment I'm having until after this next op. Bit scary, but know that chemo is the best option.

[Amanda10]

Morning ladies
Hope everyone is doing ok. I have my third t this week then one more to go. How are you feeling now pam are you healing well after your surgery ? Xx

[Whitfield]

Next Thur so one week one day. Not sure whether this is just for wound dressing or results!

Px

[Amanda10]

Thanks for the tips Pam ... Hope the DN was able to give you some medication to help with the pain. How long do you have to wait for your follow up appointment is it about two weeks xx

[Whitfield]

Do the exercises...

[Whitfield]

Had a lot of pain but main issue was bowel got impacted from drugs during op and pain relief and blood thinning injections after op.
Those who have yet to have op ensure you eat a lot of fibre. I had to call out the DN for help.

Also don't the exercises are key to recovery.

Px

[Amanda10]

Glad your op went well Pam and your back home. Make sure you get lots of rest xx hope everyone else is doing ok xx

[Whitfield]

Home from opp. No pain in Brest but a lot under arm! At least it's done now...

Px

[Brewster]

Thanks Amanda for the info , useful to know xx

[Amanda10]

Hi Brewster
I had second cycle of t last week. Don't know how it compares to EC as I had FEC first. The ses for me seem to kick in after about four days and last about four. Don't find the nausea as bad . Im just lacking in energy, my mouth has been a bit sore but the mouthwash works quite well. I asked for the cold mitts at hospital for hands and feet and so far had no pins and needles , also painted nails with black varnish trying to prevent them coming off. One lady at the hospital has worked all through her treatment so I suppose it's different for everyone . Also if yours is every week maybe you are having a lot of little doses so may be a bit better re side effects. I'm having 4 in total so two more to go. Hope you go on ok xx

[Brewster]

Hi Pam

Just popping in to wish you good luck xxx great the chemo has done its job. How did you find the T part compared to the EC. Part ? Have just finished the EC. And moving on to the T bit but weekly . Hope all goes well today xxx

[Whitfield]

Yes tomorrow is the day at last!

Hope I sleep tonight...

Px

[Amanda10]

Morning ladies
Hope everyone doing ok . Think you mentioned you were having your op tom Pam just popped on to say hope all goes well. Xx

[Whitfield]

I have four weeks between chemo and surgery. My surgery is planned for the 4th. If they dint get clear margins then I will have to go back die full removal. I think 3cm is the cut if fir lump or full removal but each hospital seem to so different things.

Px

[Callcmainc]

I just finished 3 rd round of Adrymycin and tumor shrunk from 5cm to less than 1cm. I have 1 more Adrymycin and then 12 weeks of taxol with Carboplatin. Also want to shrink tumor before surgery. So far so good.

[Amanda10]

Thanks Pam .. My lump was 5cmx3cms so a big one, but they say it is shrinking . They told me that mine will be masectomy ... Thinking I may ask for both nearer the time. Have you had a date for your surgery yet ? I think they have penciled me in for beginning of May .. Three weeks after last chemo not sure if this the normal procedure . Sorry for all the questions but you are a bit ahead of me in your treatment xx

[Whitfield]

Hi Amanda, yes the lump has strunk from 31mm to at point where they can't axtually measure it. I also have node in I,ve net so am having lump removal and full node clearance before rads. I was OKish on chemo,but won't lie it's hard so you need to eat well and try to get some exercise in. I ended up in hospital twice but hey I made it through.

Good luck.

Pam x

[Amanda10]

Hi pam
I bet your glad the chemo has finished. I should have my second t tomorrow . They prescribed me 4xfec and 4 t surgery and then rads. They are hoping to shrink the lump before the op, did the chemo work ok for you?
Xx

[Whitfield]

I'm Pam diagnosed Aug 14 TNBC grade 3 with node involvement. Just finished chemo 4EC& 4Paciltaxel and now waiting for surgery. Rads to follow. I'm pretty scared as stats are not great so it's nice o hear from others like me.

[Janesi]

It is very difficult when treatment finishes - it;s like you've been dropped like a hot potato. After all in the 6 months of treatment I counted that I had been in or at hospital for about 98 days! 

I was supposed to have 3 x fec and 3 x doxytaxel, but after the 1st doxytaxel I had to be hospitalised as the pain it had caused was unbearable, I could barely move, so they didn't give me the other 2 doses but reverted back to 2 more fec.

Take care

x

[Amanda10]

Yes it is ... Keep in touchxx

[Denmay]

It's nice to know you can come on here and let real feelings and worries show. Apart from my husband my family and friends think Im coping really well but when I'm home and close the door that's when it all hits me! Just waiting the 3 months to the 1st appointment after treatment is agonising xx

[Amanda10]

I was thinking it might be 3 months after treatment denmay . I try to wake up feeling positive but then ping start to feel anxious. I do think this forum is really good though as we are all going through this together . The positive posts are a good boost as well. I met another lady in Stoke where I live last week who has just finished her treatment for tn and is doing really well . Xx

[Denmay]

Hi amanda10, my follow up appointment is on the 18th may. I don't know if that is the norm but the oncologist said because I couldnt have the chemo they would be keeping a close eye on me! He also said if I notice anything to go back, made me a bit paranoid now and every little twinge I get a bit concerned 😁xx

[Amanda10]

Thank you for the positive post janesi. Denmay I'm half way through treatment 4 x fec 4 x t op and then rads and also feeling anxious. It's nice to see positive posts it gives me a little boost. How long after your treatment do you go for check up. I've not finished all the chemo yet but just wondered what follow up appointments we tn ladies have xx

[Denmay]

Hi janesi, thank you so much for your post. I am trying to get on top of this but feeling very down at the moment, my treatment finished 2 weeks ago and I feel at a bit lost. I had bilateral mastectomy in Nov and was supposed to be having chemo but because of other medication I am on they decided it would be too dangerous. I had 3 weeks of Rads and thought after the treatment had finished I would feel a little better! you have given me a bit of hope that things can get better xx

[Janesi]

Just to give you some good news - I was diagnosed with Grade 3 TRiple Negative BC in May 2011. After 5 FEC and 1 Doxytaxel chemo and 25 radiation I am still cancer free. I spent a good 18 months in a very stressed state of mind, worrying about every niggle and pain, got told to get a life by my consultants registrar! Which made me worse - I was contiunually told during my treatment that I was at high risk of it coming back within 1-2 years and lost a friend who had the same as me, how the heck did they expect me to feel!

Anyway I am coming  up to 4 years in May and whislt I still worry I am in a much better frame of mind these days. Whilst on holiday in Corfu last year I met a lady by a lake in the middle of nowhere and we got talking and it transpired that she had also had triple negative and was 7 years down the line and still alive and kicking - gave me a great boost I can tell you.

There are good stories out there.

xxx

[Amanda10]

Hi wyn lovely to hear you are doing well. Also your sister that's brilliant. So nice to hear such positive comments . I'm on fec t and due to start first of four ts tomorrow. Dreading this one. It feels never ending at the moment but positive comments help to raise my spirits 😊xx

[wyn]

Hi ladies,

I was also dx tnbc in oct 2013, had chemo first,lumpectomy and rads, treatment finished in july 2014 and I am now trying to put it behind me, It was a bit of a rollercoaster going through treatment and coping with side effects but it is do-able, wishing you all best wishes in your treatments and it might seem ages away before you are finished but believe me it goes by so quickly just keep positive and take good care of yourselves.

Wyn x

Ps My sister was dx tnbc 19 yrs ago and still living life to the full, most definately a long term survivor and she has been my inspiration x

[Amanda10]

Fairfield and jinny thank you so much for your positive comments. Hope you are both keeping well xx Amanda

[jinny2611]

I was diagnosed last April had 2 tumours and 21 nodes remmoved 9 testing positive just finished treatment nov if you see my first posts you will see how bad I was im still full anxiety but mentally in better place than I was its the node positve I was frightened off I didnt feel there was many out there but I have spoken to a few and have and still help when I get wobbles x

[fairfield]

Hi Girls,

I just want to provide you with hope - i was dx Jan 2008 Grade 3 TNBC, children aged 2 & 5 - 6 sessions of chemo 3xfec, 3x dosataxil - YOU CAN DO IT!!!!! I was 34 now I'm 42, huge emotional roller coaster, but if I can do it so can you. I wont lie its tough, I've just had my mammogram and been down the path of genetics, but i live my life now, NO-ONE KNOWS WHAT TOMORROW BRINGS XXXXXXXX Love n hugs to you all xxxx

[Callcmainc]

In a weird way it is nice to know we're not alone in this triple negative world we are now in. Anyone live near Orlando?

I just had port put in and I'm a little surprised how much it hurts. This makes me really nervous for how much the mastectomy (I assume I will be getting after chemo) will hurt. Maybe I'm just a big baby 😣

[Amanda10]

Hi callcmania I was diagnosed with TNBC in November after finding a large lump which I thought was due to lifting weight. I started chemo not long after. FEC not sure if that is what you will be having? Ive just had the third round they have planned 8 for me. It is a rough time but hopefully it will kill the beast. I have wanted to post on here for a while but didn't have courage. It does help to know that we are not going through this alone x

[Sue123]

Hi Callcmainc, I had a lumpectomy and a month of radiotherapy as the research shows that radio and lumpectomy is as effective as a mastectomy in operable early stage breast cancer . I know that sometimes they want to do chemo first if the lump is big and there are positive axillary nodes. It is all down to the assessment of the surgeon and the medical conference they have to discuss your plan.

I do worry about recurrence like you, however I trust my surgeon and oncologist re their advice.

I wish you all the best, Sue x

[Katherine62]

and don't forget, all the stats you read are out of date. They don't refer, and can't refer, to us just starting now, with all the extra knowledge and treatments available in the last decade or so.

xx

[Brewster]

Hi There. I was diagnosed on October 9th with grade 3 TNBC. Had double mastectomy on 28 November then my chemo starts January 9th. I have 4 boys (2 of mine and 2 acquired !) . What you read about TN is scary, so I have stopped googling and it is what it is.mthe survival rates are pretty good overall . I have been doing a low carb diet. Cutting out the alcohol and also trying to do low fat.malthough over Xmas I decided to have what I wanted including potatoes, wine and cheese !! Am back to the diet now . Good luck on your journey, lots of support for you here xxx

[Callcmainc]

Thank you Sue. I also read about eating clean which I have been doing since diagnosis. Hoping that will help prevent recurrence. Did you choose double mastectomy? I'm thinking that will also help prevent recurrence.

[Sue123]

Hi Callcmainc, I do feel for you having 2 little ones and this diagnosis. However, it does make me mad that the media prtray TN as such a dire disease. Granted its not the best but most people with tnbc do survive, over 70% survive and many of these are node pos with big tumours.

I was diagnosed just a year ago so not a long termy yet! However I do know that we triple negs respond better to chemo than the hormone dependents and although chemo was tough it is fast becoming just a memory. We can help ourselves by doing a bit more execise as this has been shown to help reduce recurrence.

You will get used to the triple neg aspect and by having the chemo you are doing all you can to beat this thing.

Love and best wishes to you, Sue x

[Callcmainc]

Dec 15 I was diagnosed with triple negative BC. I am scheduled to have 6 months chemo starting Jan 8. Trying to stay positive but Not seeing a lot of positive info out there regarding long term survivors. I have 2 young boys and want to stick around to see them grow up. Any long term survivors out there?