grade 3 triple negative

Hi

I Think this is one of the worst times.  Just been diagnosed and waiting for treatment to start.  I was diagnosed April 2018 with TNBC.  

I had chemo first.  My tumour was 2.7cm and I am not big busted so the idea was to shrink it down and have a lumpectomy.  I was told there isn't really any difference nowadays between a lumpectomy & masectomy.  Sometimes it's what you're happier with too.

I did a trial and 8 lots of chemo.  4 x Docetaxel, 4 x FEC every 3 weeks.  I think because I did a trial I had regular MRI's to check how chemo was working.  I had 100% response to chemo and was confirmed when I had my lumpectomy.

There's no right or wrong way for surgery first or chemo first.  Some people want the tumour out asap.  I was happy with chemo first because I could monitor how effective it was.

All the very best with your treatment.  You always feel more in control once it starts.  Always ask if you're not sure, there's always someone on here with experience.  I joined the other group Breast Cancer too.  I flit into both.

Thank you so much for your reply it's so kind of you. I have just met up with my breast cancer nurse and had a good cry, now feeling stronger for it. 

Hope things keep going well for you. Have a good Christmas x

Just wondering how you are getting on, my diagnosis sounds very similar to yours, I was diagnosed in July of this year, I was told I was having a lumpectomy first then chemo, I didn’t know,you could do it the other way round till too late, in some ways I wish I had so ok ew I had a do plate response to,chemo, that must be such a relief.  I am hoping I will finish on New Year’s Eve, I couldn’t tolerate the dosetaxel so had to,change to weekly paclitaxel.  I haven’t had any scans at all and am worrying about that. 

Thankyou - I know it's not priority but try and enjoy Christmas.  My BC Nurse is amazing.  Once you start treatment and you have any concerns, give her a call or I was given a 24 hour helpline number.  They were also very good.  When you have your first chemo, it's difficult to know (if you have any side effects), if it's the norm or not.  Buy a thermometer to take your temperature during chemo.  Each treatment, mri, blood test is all a step closer to getting to the other side x

I'm doing ok thank you.  I had my first mammogram on Friday and am waiting for the results which is a bit nail biting.

Docetaxel is tough.  I found that alot harder than the FEC.  When did you start your chemo? I think I had more scans becsuse I did a trial and it was the effect of chemo on the tumour and which one did the better job I think.  I knew I would be having Docetaxel and FEC but didn't know in which order until a day or two before.

I had an Mri before chemo, another one after 4 lots of Docetaxel and then another one after 3 out of 4 FEC's.  Do you see someone from Oncology when you have your bloods done?  Might be worth mentioning it to them or your BC Nurse if you're concerned.  They used to examine me everytime I went (3 weeks) and chat to see how I was doing on the meds, any side effects etc.x

I started fec in August, only managed one docetaxel and today have had my third paclitaxel.  My oncologist is lovely but always so busy she doesn’t seem to have time, everything I ask she says mmm we don’t really know with your cancer ( I am triple negative mixed metaplastic and papillary. )  I should finish New Year’s Eve  and the radio, but so far she hasn’t mentioned any scans.  I also asked her about genetic testing and she said only if I was under 50( am 52).  I also read somewhere about triple negative people being offered biphosphpnate infusions if you are post menopause have you heard of that. I am going to ask when I see her on the 23rd December. 

It just shows the difference in trusts.  I was 51 when I was diagnosed and got offered the genetic testing near enough straight away.  I had it done because I've got 2 daughters.  Fortunately, it came back negative.  It could have changed my treatment plan too if it had been positive.

Whereabouts are you in the country?  I'm in Nottingham.

Chemo put me into the menopause.  I don't know much about the infusions so can't answer that one but I bet someone canon here if uou ask on yhe main Breast Cancer section.

If I wasn't sure about anything, I used to ring my BC Nurse and she would find out for me .  I can remember when I had to see my oncologist (well one of his registrars) and they were transferring me for radiotherapy.  He said he'd get the paperwork sent over and I'd hear in a week.  Never heard anything for a couple of weeks so phoned her and she sorted it straight away.x

Maybe I will ask about the genetic testing again, have you got any cancer in the family? We haven’t and she used that as an excuse too 

I am also metaplastic triple negative it is a rare cancer . I have trouble finding others with the same diagnosis. I had chemo then mastectomy, followed by 5 weeks radiology. Things were getting back to normal , last Christmas I went to my sons in France.for a few weeks. Then getting back I was in A & E with appendicitis they found my cancer had returned in my lungs.

I am now on Capecitabine just had 2 sessions so far ,my fingers are a small problem but just waiting for my 3rd course then a scan, I just hope it is holding the cancer at bay. I think the diagnosis is a testing one for Medics.

Hope all goes well with your treatment I will keep watching for your posts

C J

 Hi Juju

I was diagnosed with BC 29 July 219 July 2019 and had a lumpectomy as my tumor was small,  7 mm at initial diagnosis, 11mm when removed 2 weeks later,  2 lymph nodes removed  and was told I would then have radiotherapy. My outcome of surgery was  full removal and tissue clearance and no cancer in nodes, a good prognosis following surgery.just radiation to come  So it was as a shock  when it was explained that the cancer was  Stage 1,  grade 3,  triple negative tumor and  there is no targeted therapy for this type of cancer as with hormone receptive BCs.  I  was again  in despair, knocked back down and  felt isolated and doomed as acquaintances  and some family members had hormone receptive tumors and in my mind they had some from on ongoing protection. The registrar informed they know very little about the cell drivers of TNBC. After the high of my surgery outcome, I became very low and  felt very alone. In desperation i went on google etc to find out more, but this did not help at all. So glad I decided to join the mac community and found the BC & TNBC groups. It has helped that I don't feel so alienated and have a place of understood shared concerns. 

I was very angry and scared  that there was not much they could tell me about TNBC, and that my limited options for preventative re-occurrence treatment would now be chemo and radiation. Like you I felt like they were to busy to talk to me after they had done their "standard formality" consultation, and expected me to absorb all this info in minutes and give consent to chemo in that same consultation time .

In the end I demanded to see the consultant who was sanctioning my treatment without discussing it with me  before I engaged in chemo. They did try and fob me telling me clinic is busy and I have had my consultation time,but I insisted,  and it was the best decision I made towards understanding and accepting my diagnosis and having some control over medical decisions made about my body. I was eventually offered 15 minutes, but ended up with a hour plus with the consultant who had agreed my treatment. So much more was explained and my questions answered. I left that room more informed, about my diagnosis, pathology report, methods of tumor testing, and long term prognosis. I gave the consultant a big cuddle for giving me that time and information  I so needed to walk this journey more positively. 

I have had 3 sessions of  FEC chemo and had  my first of 3 "T" docetaxel/Taxotere treatments today. I had biphosphpnate infusions for session 1&3, I asked why, I was told this is to protect the bones from the little monster cells taking root in the bones.  I start radiation in February. 

I found out that breast  and other cancers are in both parental blood lines and genetic testing was recommended as I have four children (3 of which are girls) which will test  for faulty genes running through/jumping  the generations as my mum is nearly 80 and did not have BC, but her sisters did in their  mid 50s like me,  and they are both in their late 70s now with no re occurrences. I am waiting for the appointment.

The NHS protocol seems to be that they don't do routine scanning  for this type of BC, which I find further frustrating and just left to worry if the treatment has worked, but I will be insisting again on a full body check to ease my mental welling, and I have started saving for a private MRI scan just in case. Just wait and see does not work for me.

I find it helps it helps the journey to have some control in your treatment programme and ask for explanations /clarifications. I have a very good breat care nurse who I go to at any time I need and attend the cancer support sessions courses on offer. I don't use google anymore for TNBC info,  as lot of the info is old. I use it for researching and following persons who have walked this journey and survived, healthy dietary foods to support my body to fight and get rid, and cross checking  info I have been given ensuring info is current  and from  reputable sources. I found out through this website that Kings college hospital are currently specializing in finding targeted treatment for TNBC. I will be contacting them for their development / further treatment options when I have completed my treatment..

Juji, own your journey, own your health management going forward, ask your medical team to explain things when you are unsure it really does help with promoting a positive mindset.

All the best

Many thanks for your message I met up with my breast cancer nurse yesterday had a bit if a wobble (cried buckets) but felt so much better for it. She is so nice and says she will be there whenever I need to talk. I am feeling really positive at the moment, don't know if I will next Thursday when I'm in for my operation! 

Take care x