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TNBC diagnosis for the 2nd time

25 REPLIES 25
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Hi unicorngirlmummy, I’m doing ok thanks, chemo no 3 next week so fingers crossed it goes ahead. Seem to be comping better this time, not sure if it’s a different lower dose of the chemo or because you know what to expect but I’m not letting it get the better of me this time! I am in control!! X
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

Hi walkerlass, just saying hello & to see how you’re doing? Xx
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Oh Wendy56 I’m so sorry to hear this! To get to 5 yrs we kinda think we’re over the worst. How was this picked up? Did you just have lumpectomies and not mastectomies? Hope your results are good and you get them very soon, as the waiting is the hardest. Xx
Wendy56
Member

Re: TNBC diagnosis for the 2nd time

Hi all

i had tnbc in right in 1998 and then again in left in 2012. I just got yo my 5 year anniversary in December and have found. 3cm Meningioma ( brain tumour ). Waiting on results of whole body t scan . Assume they are looking foe BC mets. I actually found it all easier second time round as you know what to expect xx

Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

Hi walkerlass, hope the sickness has eased off? The sister in my chemo unit said to take the jabs in the evening which is what I’ve done & my side effects to those have been quite minimal really. I do have to set an alarm on my phone to get it out of the fridge at 8.30 & another to do the injection! 😂
Finally feeling more human with more energy today, it’s taken almost 2 weeks though 😐
Hope you have a treatment plan snoozysuz & hope your side effects aren’t too awful walkerlass. Lots of love xxx
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Unicorngirlmummy & Snoozysuz, had my first round of TC (docetaxel-cyclophosphamide) today, felt a bit sickly but taking the meds. I too am dreading the jabs starting on Wednesday as they totally floored me last time, trying a different approach of having them at teatime rather than morning so when it kicks in I’m off to bed! So fingers crossed.
Hope you now have your plan Snoozysuz as at least you know what your dealing with and can plan, it’s not nice but got to be done! We can all smash this💪🏼💪🏼💕💕
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

Walkerlass & snoozysuz, how did you both get on today? Hope you are both ok xx
Snoozysuz
Member

Re: TNBC diagnosis for the 2nd time

Unicorngirlmummy I wasn’t too bad with chemo last time but the last 2 doxetaxel put me in hospital with infections. My son had his 1st prelims in 2 weeks so dreading disrupting things for him, not even sure if treatment will start before then anyway. I was dreading telling my boss I will be off again but he was great, he’s going to let me adjust my hours to suit me, to try and keep me off SSP this time as much as possible. Getting paid less will still be more than SSP if you know what I mean. My daughter also has school camp in May and then finishes primary school in June. Not to mention we had a holiday booked for July. So much going on and I was looking forward to so much this year. We just have to get on with it for our kids don’t we. We’ve done it once and we’ll do it again.

I’m dreading having to have filgrastim jags again, the bone pain really floored me last time, I didn’t suffer from sickness and chemo wasn’t really that bad until I had to start with them. I just finished chemo in Jan last year so wondering how my body will cope. Will find out on Monday what treatment I’ll start with. Walker Lass how are you coping with it. Have they said if you are having surgery yet.

Big hugs to you girls xx
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

I’m having docetaxol & carboplatin this time. I had my second cycle last Thursday. The nausea isn’t as awful as with the AC. I have the akynzeo prior & take metoclopramide for a week. My oncologist wants me to have 6 cycles but worried about how my bone marrow will cope as I only finished AC last January. They will reassess after 4 cycles. I’d say the side effects linger for longer on this one. With last years I’d have chemo on the Monday & I knew I’d be really rough until Friday evening. This one makes my head really fuzzy. Yesterday I started to feel more human. I wouldn’t say I’m any more tired than last time. I’m also having 10 days of filgrastim injections. How many do you have to have? Xx
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Unicorngirlmummy which chemo you having this time and how many are you having/had? And how are you finding it this time with the side effect, better than last time?
Sorry so many questions but just curious xx
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

I had also hoped to return to work as only being paid SSP. I’ve just popped down to Asda & matalan & feel exhausted 😬 Huge admiration for the ladies working through their chemo. Good luck for Monday! I cried as I walked to the unit again for chemo, the staff are all wonderful there but it’s so hard to be back there again when you thought that awful chapter of your life was done! Xx
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

It’s lovely to hear all your replies and support, I didn’t use this site first time round but I am finding it very reassuring that I’m not alone.
I start 4 rounds of TC (docetaxel-cyclophosphamide) on Monday, had hoped I may get back to work inbetween each cycle as the time will pass quicker and it will take my mind off things.
My kids have been great since I told them also.
Snoozysuz I’m hoping after all this to have a mastectomy on my other Breast to hopefully stop this appearing in that one, TN does seem to reappear quickly in lots of cases so hopefully this time I will kick it once and for all💪🏼X
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

Snoozysuz, sorry to hear you’re back again 😔 Like yourself my hair was just returning to something remotely passable! It’s absolutely soul destroying & terrifying. I was desperately hoping I wouldn’t need chemo but being TN & that it came back so soon maybe you need to prepare yourself that will be the plan. Good luck for your treatment plan. Big hugs to you all xx
Snoozysuz
Member

Re: TNBC diagnosis for the 2nd time

Hi Walker Lass, I’ve just been diagnosed with TNBC in my left breast, I was diagnosed in my right, Aug 2016, had 6 round of FEC T, lumpectomy in Feb last year and 19 rounds of rads which finished in May last year. I was just getting back to normal and starting to feel better, now this. Have a decent head of hair again too. Had to go for bone and liver scans today then find out treatment on Mon. Don’t know if a mastectomy will be on the cards, or just go through it all again. It’s soul destroying isn’t it. My mum was also on holiday but is back now and has been amazing once again. Told my 2 kids 2 days ago and thankfully they’re fine, worried about the extra housework involved for them, but I wouldn’t want them being anything but normal.

What treatment are you getting this time? I handled chemo ok last time but ended up being admitted 3 times with infections near the end. My son starts his exams soon, worried it hits harder this time and I’m not there for him when he needs me. Susan x
Unicorngirlmummy
Member

Re: TNBC diagnosis for the 2nd time

Hello walker lass, sorry to read your post. I too had TNBC in 2016, l had a lumpectomy, chemo & rads, has just got back to normal life when it came back at the end of last year. I too have now had a mastectomy, am on the second cycle of chemo. Chemo was the biggest dread, to do that all again, especially when my hair, although still very short, was there again! Have you started chemo? T x
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Hi wendy56, sorry to hear you had the Braca gene, my sister and I were tested and we don’t have it.
Starting 4 rounds of chemo and then I’m hopefully going to have a mysectomy on the other side sometime this year.
Wendy56
Member

Re: TNBC diagnosis for the 2nd time

I had TN in 1998 and again in 2012. Found out I had the Brca 1 gene so had double mx early 2013

Jill1998
Community Champion

Re: TNBC diagnosis for the 2nd time

Hi Helen,welcome to the forum .Sorry you are having to go through this again but no reason why you shouldn't be successfully treated again.Lots of support and advice on this site .If you are going through chemo again there are monthly threads in the going through treatment section where ladies going through treatment at the same time can support each other .Jill.
HelenCr
Member

Re: TNBC diagnosis for the 2nd time

Hi! I had tnbc in 2014., 2.3 cm tumour, surgery, lumpectomy, done chemo....now they found on ultrasound again tnbc and i had surgery before three weeks ago. Now, tumor is in the same breast but not the same place, 1 cm. Waiting for app. with my oncologist. Sorry my english is not very good 🙂
Jill1998
Community Champion

Re: TNBC diagnosis for the 2nd time

Good luck with whatever comes next and good luck talking to your Mum. There is lots of support on this forum if you want people who understand to talk to .If you look in the going through treatment section there are chemotherapy monthly threads which can give a lot of support and humour with that particular part of your treatment or feel free to post whenever you need a bit of moral support anywhere on the forum .Jill x
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Thanks for that Jill1998. Sorry you had to go through it twice also, but that’s making me feel more positive that yes I’ll come out the other side. My mums back tomorrow and not looking forward to giving her the news, as didn’t say she’s had both my sister I to desl with! But my sisters was not TNBC it was the hormonal type. What’s he odds of that!
Thank you for taking the time to reply, means a lot x
Jill1998
Community Champion

Re: TNBC diagnosis for the 2nd time

Walker lass,so unfair and frustrating ..Ive had 2 cancer diagnoses in the past 2 years also - its soul destroying .But as hard as it is ,no reason why you can't come out the other side and live your life again ,hard putting your family through it again I know but they will deal with it don't feel guilty , this time you and they know more what to expect so a bit of a head start .When is your Mum back ?
Walker Lass
Member

Re: TNBC diagnosis for the 2nd time

Thank you for my virtual hugs, on a roller coaster of emotions at the minute and my mum is on holiday and is totally unaware at the moment 😞
Debbie1964
Member

Re: TNBC diagnosis for the 2nd time

Hi walker lass, i havent had a double diagnosis, but i didnt want to walk buy without giving you a hug, im so sorry your having to go through this again, once is certainley enough for anyone, i constantley worry about getting it again, big hugs to you x
Caroline99
Member

Re: TNBC diagnosis for the 2nd time

That is terrible. I can understand your anger. I would send you a hug, but I can't see how to do it.

 

Walker Lass
Member

TNBC diagnosis for the 2nd time

I was diagnosed for TNBC in July 2015 and had 6 rounds of FEC-T chemo, lumpectomy then followed by 20 radio, no lymph nodes affected.  Life was getting back to normal, first mammogram and MRI the following year were clear then August this year (2017) I was told I had a DCIS in the same breast and the only option was a mastectomy.  I had this done beginning of November with the back flap option and couldn't believe how well it went and how well I felt.  Went in last week to find out if the lymph's had been affected to be told they had found a stage 3 TNBC again!  To say I'm devastated is an understatement. Going for a CT scan next week and off to meet my oncologist again to discuss chemo. Don't know how to tell my kids again and feel so angry as asked for a mastectomy 2 years ago and they wouldn't do it and now I have to go through this all again, but I will as I won't let this beat me! 

Anyone else had a double diagnosis?