Hi. I just wanted to hear from anyone with a similar diagnosis to myself and become more informed about it. I’m 59 and in good health but was diagnosed with stage 2 TNBC a month a go. Initially I was told that the tumor was 3cm but after the MRI scan it was confirmed as being 6.5 cm. There are no indications that it was entered the lymph nodes. My treatment is 7 x EC , surgery then radiotherapy. My first chemo was last Thursday and I felt ill all week until yesterday when I started to feel more ‘normal’ . My work has been great and I have been overwhelmed with support from so many friends and family.
It’s impossible not to ‘google’ information on line but it would help if anyone out there had a similar diagnosis so we could exchange worries and experiences. When I’m googling TNBC, the words ‘aggressive’ ‘high rate of reoccurrence’ and ‘cancer gene carrier’ keep coming up.(I’ve had the test but the results take 10 -12 weeks)
Obviously I will be asking these questions to my oncologist at the next appointment, but any positive feedback would be great.
I am also triple negative and was told I had a 2 cm tumour and 2 infected lymph nodes. Just finished 4 x EC treatment and my ultrasound showed the tumour had shrunk so much it wasn’t showing on the scan and the lymph nodes are now clear (as far as they can see). Just started 12x weekly Paclitaxol and Carboplatin with a view to an op after chemo is finished.
Waiting for my gene test results to see if I have the BRCA mutation (apparently I didn’t qualify on NHS as I am 61 rather than 60 (!!)) so I’ve paid for the test privately.
When I saw my oncologist following the ultrasound he told me that my future with triple negative was determined more by my response to this treatment rather than having a full mastectomy.
Very encouraged by my response so Triple Negative isn’t the end of the world as far as I’m concerned. Just got to grit my teeth and get through the next 11 weeks of chemo. …
I was diagnosed with TNBC on May at 34 years old.It was 24mm tumour which after MRI might have turned to be 58mm overall.I had genetics test done -still waiting for results- since I have a strong family history of BRCA 1 mutation. Anyway,I am on 4 x EC and 4 x Carboplatin+Placitaxel followed by surgery -we will discuss options after EC cycle when I am expected to know about treatment response and genetics results…
It is scary to search about TNBC but also know that chemo seems to do a fine job with it and also that after 5 years it has the same recurrence percentage than others -or that’s what I heard. So ask your team but focus on treatment and recovery, think statistics are just numbers based on a limited group of people and percentages are improving as we speak .
Less than 5% of indivduals are carriers of the BRAC 1 or BRAC 2 gene so chances are it less likely to be any of the two high risk genes.
When I was tested last year I was advised there are a number of small to medium risk genes but these are generally not tested for as standard by the NHS.
It might be worth remembering that TNC is an umberlla term, all it really means it is not one of the three most common types of breast cancer found in woman. Those three most common types all have targetted therpies that have helped to reduce the risk of reoccurance.
At the age of 41 I was diagnosed with a 45 mm breast cancer with no lymph node involvement and received 6 x FEC-T and a wide local excission, followed by surgery, then 19 days of radiotherpy.
TNBC tends to respond rather well to chemo with 1 in 4 cases showing a complete respose (CPR) and “melting” away completley. In some cases where the tumor has not responded so well you may be offered a treatement of oral chemotherpy called Capcitabine (this is much more managable than intravenous chemo). It is the closest thing to a targetted treatement for TNBC.
Although the information out there may seem quite negative what I found helpful was remembering that if I just focused on TNBC and discounted the other types of breast cancer, the survivability compared with many other cancers of the body it is still a relativly positive outlook. You may find that help too?
I have been diagnosed with triple negative too - nodes were clear and the tumour completely removed. Waiting for oncology appointment to start chemo. I am not looking forward to it but appreciate it needs to be done to improve my chances of non recurrence. I have not googled it - too much of a coward - but I know what you mean, the messages are negative except on here - I am sure both you, I and other people newly diagnosed can beat this. I am two years older than you and in great health too so I think we stand a good chance of getting though the treatment. Keep smiling and try not to ask Dr Google too much - in my experience he is not always right! x
Hi, i was diagnosed with stage 3C TNBC on May 24th, 2019. I am 36 years old, no children. I did my first chemo on June 3rd, my schedule is every 3 weeks. I would suggest you drink plenty water during your treatment. Especially before and after Chemo. That helped me with the side effects, for me it was little to none. I am trusting God with this, i know he will carry us through. Be strong.?
I also have TNBC, sage II-B. I am 62 yrs old. I will be having 4x of AC every other week and then 12x weekly rounds of Taxol. I had my first treatment last Monday. So far so good. I’ve been a little more tired than normal and have had slight headaches off and on. I’m anxious to find out how the next few will go.
I’ve just being diagnosed with a triple negative, and it’s 1.5cm. Will be seeing the oncologist next week about starting chemo. I’ve not bothered googling anything, it’s tempting, but…nah.
They’re going to sign me up for a trial, which will speed up the gene test results (my paternal grandmother died from BC at about my age, but that was in the late ‘60s, so even if mine is genetic, the long term prospects are completely different). No surgery for me till after the gene test results, so they know how drastic they need to be. I’ve had a couple of problems so far, one being that my ferrous metal allergy meant I couldn’t have the gadolinium for the MRI (thankfully the MRI was still usable), and the other being that the lump is too far back to show on a mammogram, so I’ll be having a titanium tag inserted into it so they can actually find the thing when surgery come around. ?
I have just finished treatment (bar 3 years worth of bone infusions) after being diagnosed with TNBC. 8 years ago, I was diagnosed with Occult breast cancer in right breast (no lump, mamo clear except for enlarged node). No primary source found but it was deduced to be BC as I was Her2 positive. I had treatment to remove all my nodes, chemo, radiation and Herceptin. Rebuilt my life and had annual mamos. Despite a clear mamo last OCtober, upon a routine examination, consultant found a small lump (left breast this time). I couldn’t believe it this time TNBC. I have just finished treatment - started with chemo, then lumpetomy (lump had shrunk) and 14 nodes removed) with no bad stuff in any of them (originally it was in one node), followed by an intensive 5 day radiation course. Breast is still red and healing but no skin breakage and I had a great surgeon and can hardly see scar. I had some of my treatment and my op throughout lockdown which gave me terrible anxiety. Now team have advised me to take a BRACA test. I have had a genetics counselling appointment but am really unsure how I want to proceed re a test. I have just turned 60, so to have cancer at 52 and 59 (different types) is a bit unusual but I still have both breasts albeit a bit wonky. I have a 50% chance of the gene and therefore if I have it, my son would have a 50% chance. I am no longer sure whether I want to take the test although I have not ruled it out. The NHS are wonderful as are the helplines that the charities provide. I survived treatment during lockdown, with help from family and friends (and eating a lot of cake…). I wish you well in your treatment.
I too have TNBC and in lymph nodes I was 30. I was on fec - T chemo then double mastectomy radiotherapy. I had genetic testing and shocked I didnt carry a gene for breast cancer. I try not google
my mum and Auntie had bc in their early 40s so we go invited to do a genetic testing program which we did they couldn’t find anything but they said that keep are samples as it always changing.
Hope all goes well for you. X
Hi all, I was diagnosed with DCIS in Sept '20. I had surgery 6wks ago to remove the lump and was then just due rads.
When histology came back on my tumour, an invasive part was found, which wasn’t picked up on initial biopsy (hence DCIS diagnosis) so the testing was completed to see which receptors it was responding too, if any, all negative, hence by then diagnosis of TNBC.
Due to my age (I’m classed as young in the cancer world, certainly don’t feel it at the moment) I was automatically referred to genetics (awaiting results back, no cancer/BC history in my family to my knowledge) and was also referred to Oncology.
Chemo discussed and encouraged, so I gave consent. Just delayed starting that, due to swelling from my surgery (I had a mammoplasty).
Anyway, saw my Breast Surgeon Consultant today who’s given go ahead for chemo as body recovered enough from surgery, so I will be starting chemo next week.
I’ll be having 12 x weekly infusions of Paclitaxel and 3 weekly Carboplatin.
I have looked at TNBC information online and although it worries me re the reoccurrence rates being higher and it being the most aggressive form of BC, I know it will always be a part of my life, but I don’t intend on it consuming my every thought and I just remain positive I’m receiving all of the treatment I need and will be looked after in the future for regular check ups, etc and will be very much aware of signs of reoccurrence etc in the future.
