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Triple Negative Breast Cancer

29 REPLIES 29
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi Ladies,

Welcome to the club nobody wants to be in Catherine!! It's been a very long time since I have been on this forum (I couldn't even remember my password lol).

All my treatment is done now, I had my last Chemo Feb 2015 and rads were all done in April, I'm now back to work full time and loving life!!

The last year was horrendous I won't sugar coat it but I would totally do it again if I had to!! I had 2 ops (lumpectomy, cavity shave, SLNB and ANC) I had 6 rounds of FEC-T Chemo (feckin awful) and 15 rounds of high dose import high radiotherapy! My lump was 49mm in total and I had lymph node involvement thank god only 1 of 20 nodes tested positive! I had an awful time on Chemo but it has saved my life and to be honest I would've been more worried if I hadn't of had it!!

How old are you Hun, if you don't mind me asking? Only I was 33 at diagnosis (almost 35 now) and I found an awesome group on Facebook for under 45's it has been a massive comfort and I have made some life long friends! If you are under 45 then let me know and I'll give u the details if not then there is a triple negative group also (I think you can be any age in that group) these support groups honestly are a lifeline!!

They are secret groups too so your friends won't see what's being posted etc... (If you don't use Facebook then u won't have a clue what I'm talking about lol).

Anyway we are all here to help if you have any questions feel free to ask!! You are not alone we are all here for you!!

Sending lots of love and hugs

Lyndsey xxx
Whitfield
Member

Re: Triple Negative Breast Cancer

Hi Catherine,

 

Sorry  you you are here.  

 

I was was diagnoised TNBC, 31mm tumour and nodes involved so I had chemo first.  8 in total, 4 EC and 4 piclitaxol, surgery with dull node clearance then 20 rads.

 

I'm not sure what info you need but I suspect it's should I do chemo?  I would go with what the specialists advise.  I had to have it as the hospital knew my nodes were positive so it was done to clean up any stray cancer cells that had moved on from the nodes.  Chemo first to catch the rogues before they settled in and started to multiply.  

 

As as you can see from we were at different stages so it may be the hositial give you options if the cancer is smaller and not in the nodes.

 

This forum is great for getting advise and support from other people who have either been on the journey or in the process.

 

Given the the choice and I know chemo is horrid I would still do it as I would always be with wondering what if..... And did I do everything to stop this horrid decease.

 

It is scary I know and would say if you can get some counselling booked in as its good to talk with someone removed from the suitation.  Does your hospital offer this?  If not MacMillian do.

 

sendi g love and hugs. 

 

Pam x

CatherineJ
Member

Re: Triple Negative Breast Cancer

Hi, I've just been diagnosed with TNBC with a 6mm Invasive Ductal Carcinoma.

I've had a lumpectomy over xmas and 5 lymph nodes removed which were clean.

I'm trying to find out if everyone says Yes to chemo, I'm so confused and frightening but trying to be calm.

Thanks for reading this.

bleachbabe
Member

Re: Triple Negative Breast Cancer

Oh for goodness sake am really not getting the hang of this posting thing!! Just realised Lyndseyloo I was reading your first post back in 2014 lol!!! what a nutter I shall blame it on chemo brain!! Well you don't need most of the advice ive given you as youve been there and got the teashirt so to speak!!  Any advice greatly appreciated lol!!! xx

bleachbabe
Member

Re: Triple Negative Breast Cancer

Hi lyndseyloo again, just to say with regards to the period/ovaries they dont definately start working again in everyone just in some and the younger you are the more chance of them working again, so you only being 33 there is definately hope, hope that makes sense xx

bleachbabe
Member

Re: Triple Negative Breast Cancer

Hi Lyndseyloo, I know your post was a month ago but im new to these forums and finding my way around them so still thought I would reply.  I had (i like to say) TNBC grade 3 15mm IDC in one breast and Oestrogen positive 16mm in other breast (I like to be different not!!).  I felt personally no other option but to have double masectomy but fine with my decision.  Im older than you a young 46 but still pre-menopausal.  As I understand it from the periods point of view yes chemo will stop your periods putting you through menopause but the younger you are the ovaries will kick in again and start working.  Also my understanding of TNBC is that as all three receptors are negative the only medication given is chemo! as you don't need Tamoxifen or the herceptin drug.  I will of course have the Tamoxifen drug as one of mine positive to Oestrogen so guess will join some kind of trial I think. So basically although Chemo a challenge I personally took everything offered to give myself the best possible outcome.  Its such a flippin scary road and each new hurdle brings its own stress and anxiety but we all going through the same thing and are all here to support and give comfort to each other, much love and hugs your way BB X

Whitfield
Member

Re: Triple Negative Breast Cancer

Had first yearly appointment with Advance Breast Cancer Nurse as Marsden don't send you back to see the consultant!  This is a little worrying.

 

had the mammograms and am awaiting the results.  Will have to wait a possible two weeks!  Just dying to get on with life.  Having first holiday in three years soon.  Going to Dorset as abroad insurance is too costly.

 

wishing you all well.

 

pam x

Rikax
Member

Re: Triple Negative Breast Cancer

Hi Tiff

did you make a final decision on Chemo, I am struggling to make that decision at present. Would be good to know your thought processes on it. Rikax

Whitfield
Member

Re: Triple Negative Breast Cancer

Hi Lyndsey, I think you mad a good choice going for the trial. If I was offered I would have gone for it as we need all the help we can get.

I'm nearly one year since first diagnoses and have an appointment with a specialist nurse to check on me inAugust but the hositial don't seem to be saying anything about further appointments and I'm worrying when my next mammograms will be. Surgery was done this March so I'm confused when this should happen.

I sometimes feel that I'm a bother to them as like you I've had several hospital admissions and a lot of minor other issues throughout treatment.

The one good thing is I did get a complete response to the chemo and I know the hositial were very happy about that.

Why did you need two operations?

Keeping up with extercises are shoulder is very stiff....

Sending love and wishing you good health.

Oh, by the way I also had thyroid problem like you. Have Hasimottos decease.

Pam x
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi Pam, I hope your well, I get confused at the different treatments, I had 6 FEC-T I was in hospital a couple of times I was so ill, chemo was horrendous I even had to have a blood transfusion! I can't believe that it's all done now really the time just flew by! I too had full node clearance, I had 1 positive node from my Sentinal node biopsy! Thankfully the rest were clear! I had 2 surgeries before chemo, I was offered the import high trial for rads I decided to go for it as if I was lucky enough to get the highest dose (arm 3) group then I would only need 15 rads instead of 25 and it would be finished quicker lol! Also I get a 10 year follow up with the oncologist which Makes me feel a bit better, I have met a lot of ladies with similar diagnosis's as me but treatment has been totally different!! I don't get it but I do have faith in my medical team! I just had my first mammogram Since diagnosis a couple of days ago (now to wait for the results) and I have appointments with my onc and breast surgeon every 3 months for the first 2 years! I have had a few biopsies on my thyroid which showed up a module on my CT scan in September so this has been and is still being investigated they are monitoring me closely but looks like I may need to have another op in the coming months so that can do a full histology! I am just taking every day as it comes and trying to enjoy life!! 🙂 xXx
Whitfield
Member

Re: Triple Negative Breast Cancer

Like Lynsdey I too have had grade 3 TNBC with nodes involved. Size of tumour 31mm. I had eight chemos, then surgery then 20 rads. I had full node clearance. It's no walk in the park but your can do it. I'm much older then Lyndsey so that may be why I had more chemos. Four EC then four taxol. I have been lucky to have had a complete response to chemo. Do get some counselling booked in if you can as even with good family and friends it's challenging and we are also here to listen and help where we can.

Good luck with treatment.

Pam x
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi Lynsey,

I hope ur well, I don't come on here very often but saw ur message so wanted to say hi! I spend a lot of time on YBCN on Facebook (how old are you if u are under 45 it's a great group to join) so I have now completed 6 rounds of chemo, 15 sessions of high dose import high rads, 2 ops and I'm doing ok I'm starting to get my life back on track, I have an ongoing thyroid issue but that's all! I had the genetics test and it came back clear so I guess it's just bad luck! If u have any questions feel free to message me!!

Big hugs Lyndsey xxx
Miarose
Member

Re: Triple Negative Breast Cancer

Sorry just saw the date after I posted will just read a bit further on ha ha
Miarose
Member

Re: Triple Negative Breast Cancer

Funny my name is Lynsey too and I'm triple negative with a grade 3 stage 2a BC. My lump is 27mm and will start chemo in about 3 weeks, then surgery then radiotherapy. It's so scary! Will have a genetic test done also. I was not told too much but sure I'm will find out more on Wednesday with genetics people. Are they offering you this test lyndseyloo? If I find out more will let you know.
Whitfield
Member

Re: Triple Negative Breast Cancer

So glad to hear you are doining week Cath. I'm now two chemos in with another six to go. Two more EC then On to four Tax, then opp then rads. God it's a long ring and it's not been easy with sickness and all the other SE.

Pam. Aka Whitfield
CathC
Member

Re: Triple Negative Breast Cancer


@lyndseyloo wrote:
Hi everyone just wanted to give a quick update, I have had the results of my last Op and it was all good, they got the clear margins and they removed a further 19 lymph nodes which were all clear so only 1/21 lymph nodes positive! I have had my thyroid biopsy and am waiting for the results! I am due to start chemo on Thursday (16th oct) this may be delayed if the thyroid result is not good i also have a stinking cold right now so not sure if that will delay things a bit!! Hoping to be better by the time I see my Onc on weds, I am meeting with chemo nurses tomorrow, having a PICC line put in (which will be in for the whole 5 months) and bloods done on Tuesday, Onc appt weds and then chemo Thursday so have a busy week!! I hope u are all doing well XXXX

Hi lyndseyloo

 

Wanted to wish you luck for your results, and to starting your chemo this week. As you say, a busy week ahead for you. Hope all goes well.

 

Hugs

 

Cath

lyndsey
Member

Re: Triple Negative Breast Cancer

Hi everyone just wanted to give a quick update, I have had the results of my last Op and it was all good, they got the clear margins and they removed a further 19 lymph nodes which were all clear so only 1/21 lymph nodes positive! I have had my thyroid biopsy and am waiting for the results! I am due to start chemo on Thursday (16th oct) this may be delayed if the thyroid result is not good i also have a stinking cold right now so not sure if that will delay things a bit!! Hoping to be better by the time I see my Onc on weds, I am meeting with chemo nurses tomorrow, having a PICC line put in (which will be in for the whole 5 months) and bloods done on Tuesday, Onc appt weds and then chemo Thursday so have a busy week!! I hope u are all doing well XXXX
lyndsey
Member

Re: Triple Negative Breast Cancer

Hey Girls,

Thanks for the replies!! Not long now until the 10th, time seems to be flying by!! Had a lovely day out at the zoo yesterday with my daughter and the other half it was lovely to just forget for a while!! We then went shopping for bday prezzies as our little girl is 3 on Saturday!! We had a lovely day!!

Whitfield the waiting is the worst!!! Good luck with treatment let me know how u get on!! I never got a choice about anything so just going with it lol xxx
CathC
Member

Re: Triple Negative Breast Cancer


@Whitfield wrote:
I'm TN with nodes , grade 3 and lump 31mm. Not yet started treatment but consultant said chemo first, removal the rads. I did have the choice lump first but consultant said chemo first is better.

Can't wait to start treatment as going slightly mad with worry!

Hi Whitfield

 

Have you any date for your chemo start? It's hard not to worry because you just want to be doing something and waiting around for doctors and appointmens seems like wasted time.

 

Here's hoping they give you a date soon.

 

Hugs

 

Cath

CathC
Member

Re: Triple Negative Breast Cancer


@lyndseyloo wrote:
Hi Everyone, I had my follow up appointment yesterday as had a lumpectomy and SLNB 2 weeks ago, and it's not good news I have to have another op on the 10th September they didn't get clear margins and of the 2 lymph nodes they removed one of them was affected so they need to remove more for testing!! If they don't get clear margins this time I will probably have to have a mastectomy!! I will probably be starting chemo in October (if I don't need more surgery) for about 4 months then radiotherapy, I feel like I have had a massive set back!! 😢 xx

Hi lyndseyloo

 

Sorry your results weren't better. I know the thought of more scary was more frightening to me than the surgery itself, but I've heard it's not as bad the second time as they go back in to the original incision. Still, horrible time for you and I wish you the very best for the 10th.

 

Hugs

 

Cath

Whitfield
Member

Re: Triple Negative Breast Cancer

I'm TN with nodes , grade 3 and lump 31mm. Not yet started treatment but consultant said chemo first, removal the rads. I did have the choice lump first but consultant said chemo first is better.

Can't wait to start treatment as going slightly mad with worry!
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi Everyone, I had my follow up appointment yesterday as had a lumpectomy and SLNB 2 weeks ago, and it's not good news I have to have another op on the 10th September they didn't get clear margins and of the 2 lymph nodes they removed one of them was affected so they need to remove more for testing!! If they don't get clear margins this time I will probably have to have a mastectomy!! I will probably be starting chemo in October (if I don't need more surgery) for about 4 months then radiotherapy, I feel like I have had a massive set back!! 😢 xx
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi Tiff,

My lumpectomy and SLNB is on Wednesday (getting nervous now), I haven't been given any options on Chemo or anything yet think my consultant is just dealing with one thing at a time, he wasn't even gonna tell me I was triple negative until I asked!! To be honest if I'm not offered chemo I will be more worried and if I am offered then I am taking it, TNBC is not easy to treat so u need to take whatever they offer you!!

I hope your op goes well keep in touch and let me know how u get on.

Big Hugs Lyndsey xx
allyoucantiff
Member

Re: Triple Negative Breast Cancer

HI Lindsey,

 

I'm 29, I was just diagnosed with TNBC, tumor 2cm and my lumpectomy is on Aug 8th... 

 

Did you decide on chemo? I'm still deciding what I should do. 

 

-Tiff

lyndsey
Member

Re: Triple Negative Breast Cancer

Hi flo, I did get your message I will reply now xxxx
lyndsey
Member

Re: Triple Negative Breast Cancer

Hi girls, thank you so much for the replies I really appreciate it! I am probably just overthinking everything at the moment, I wake up in the morning and it's on my mind I go to sleep at night and it's on my mind, it's just awful and I know everyone else is in the same boat! I'm so thankful to be able to talk to people that understand what I'm going through as unfortunately they (you) are all going through the same thing xxx
Downbutnotout
Member

Re: Triple Negative Breast Cancer

Hi Lyndsey - I don't know if you received it but I sent you a private message. Let me know if it didn't get through.

 

Flo

X

CathC
Member

Re: Triple Negative Breast Cancer

Hi, Lyndsey

 

Don't apologise for asking questions, that's what the site is for. Plus, we've all been where you are - scared and wanting answers. Hopefully, you'll find them here.

 

I was diagnosed triple negative grade 3 on the 9th May. Had my lumpectomy and snb on the 5th June - 3 nodes taken out, all clear, thankfully - and I started my chemo FEC-100 on the 8th July.

 

I think the doctor went for a lumpectomy because I'd found the lump quite quickly. I guess, in these matters we must bow to their experience. I would say, however, if you're unsure or want to know why he/she made the choices they did for you, you should ask. 

 

I'm sorry I can't help with fertility. I went through an early menopause at 40 so that was never a consideration for me. Maybe someone else can chime in with their experiences.

 

Hugs

 

Cath

 

 

Jo_BCC
Member

Re: Triple Negative Breast Cancer

Hi lyndseyloo

 

I'm sorry you haven't had any replies as yet, but hopefully someone will now see this and reply to you.  In the meantime you might find it helpful to give our helpline team a ring and have a chat with them about your thoughts.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

lyndsey
Member

Triple Negative Breast Cancer

Hi Girls,

For all of you who are triple negative I wonder if u can help me, what has your treatment been? In which order?

Also did your periods stop? If so how soon and did they come back?

I'm only 33 have TNBC grade 3 stage 2a IDC, tumour measures at 43mm, I am booked in for a lumpectomy and sentinel lymph node biopsy on 6th August I am a little surprised my consultant is going straight for lumpectomy as thought 43mm was quite big but I'm sure he knows best he also said he's not sure until lumpectomy results are back whether I will need chemo but this leaves me a little anxious as there is not much treatment for TNBC, any advice would be fantastic! Am curious about periods as I am 33 and although I have a child already my family is not yet complete so am worried about fertility and am pretty sure I don't qualify for Fertility treatment on the NHS as I already have a child! So many questions sorry this is such a worrying and confusing time!

Thanks Lyndsey xx