Advice on TNBC please xx

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

Hi Lyndseyloo

Sorry you haven’t had any replies to your question yet, but hopefully someone will now see your post.  If you would like to have a chat with one ofour helpline staff, I’m sure they’ll be only too happy to help.

Kind regards,

Jo, Moderator

Hi Lyndseyloo,

 

 have just seen your post and I know you must be concerned and worried however once you have your treatment plan in place things will start to move and you will be able to cope with it much better.

I can share my experience with you to help but every treatment plan is different and tailored to each individual

I was diagnosed Nov 13 ( seems a lifetime away now) with triple neg,grade 2 IDC.

I was told I was to have chemo because it was TN.

Started chemo 4th Dec -6 Fec-T ,had sentinel node biopsy 9th Dec - No node involvement.

Finished chemo 21st March - although side effects were sometimes unpleasant it was perfectly do-able.

Had lumpectomy on 9th April- pathology result -tumour had shrunk and clear margins achieved.

then had 15 rads+4 boosters and finished those 3 weeks ago.(hooray end of treatment).

 

I have since been to breast clinic for follow up appointment and they were very happy with treatment and out come so don’t need to go back until Nov for my yearly mamogramme.

I am due to see onc next month for follow up and breast clinic said I would prob be discharged from them and continue to attend breast clinic on a yearly basis.

 

I am very happy with the treatment I received and feel I can now move on and get back to normal now.

 

I cant comment on periods as I had just started going through menopause when I was diagosed but I am sure someone will come along with info.

 

Take one day at a time and try not to think to far ahead in treatment or read any negative stories on google etc. Treatment has come so far and you will get through this.

Wishing you all the best in your treatment and sending you (((Hugs)))).

 

Wyn x

 

Thanks Jo xx

Hi Wyn,

Thank you so much for sharing your story with me, I am ok most days but the waiting in between appointments is slowly driving me insane I used to be a really patient person but this has now changed!! I still have tearful moments! But on the whole I think in bearing up quite well! I have my lumpectomy and SLNB on Wednesday and am almost excited (is that weird??) that something is finally happening with my treatment and I will soon have a treatment plan!!

I have been trying not to read too much but it is hard we are our own worst enemies when it comes to things like this!! I don’t think it’s possible to be patient when going through this!

Take care and thanks again for your reply

Love Lynds xx

Hi Roxie,

Sorry for late reply, I don’t seem to get notified when I get a reply and haven’t been on here for a few days!

Thanks for sharing your story, it’s always nice to hear about other peoples journeys!! I have had my op and am now waiting for my follow up which is on the 21st (getting a little anxious now but at the same time looking forward to getting to the next chapter in this story) is it wrong to be looking forward to an appointment? I just want to know what’s next and finally get an actual treatment plan!! Hopefully won’t need more surgery! (Fingers crossed).

Thanks again for sharing your story with me and good luck with the rest of your treatment! I hope you are not suffering too much with side effects.

Big hugs Lyndsey xx

Hi Choock,

I hope you get good results tomorrow I will be thinking of you and have everything crossed for you!! Please let me know how u get on!! I am ok had a few bad days and yesterday was just full of tears but today I am feeling better just gotta get the next op done and dusted and see what’s next!!

Sending love hugs and luck

Lyndsey xx

Reading postings it’s clear we all have our own mountains to climb. I wish you all well with treatments. I’m TNBC gr 3 with chemo to start 17th Sep. I’m so concerned about secondaries but will have to take each day as it comes. Freaking out is now the norm!

Hugs all round.

Hi Whitfield,

I know exactly how u feel about the whole secondary thing it’s so scary!! I was plodding along quiet happily and then my BCN called me on Monday to say as they are getting everything ready for my op next week she noticed I hadn’t had a CT Scan or Bone scan so booked them for yesterday!! I’ve had then now but have been freaking out and now I will find out on Monday! I have my next op on weds so a busy week ahead!! Have you had a CT and bone scan? I seem to have had every scan known to man (almost) xxx

Hey Chook,

How were the results of your scans? I hope you got good news!! Let me know xxx

So lucky both scans looked clear. chemo to start 17th and having accelerated treatment!

Good luck with your road.

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