i thought I’d drop a line as I was also recently diagnosed with TN - 2.1cm and 1 axillary lump involvement + 1 in chest. Was due to be part of a trial but not anymore and should start treatment next week 4 x AC + 12 Paclitaxel and Carboplatin and then surgery and radiation. I am petrified and MiniMad has been good and supportive ... but struggles with anxiety !!!!!
i know this treatment will eat well into 2020 so I need to look at it as a project that required all my attention!
all the best to all
Hi Carol. At the age of 48 in 2017 I was diagnosed with TNBC. It is a daunting time, but I got through it as you will too xx
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. 😬
Thanks, I'm trying to stay optomistic. I know it's going to be a long winter and I am so looking forward to the spring and new beginnings.
Hi ninad you could join the November 2019 chemo starters thread, amazing bunch on there and you will have other tn’s to 👭👭 through together with others who have their own treatment plans for other Bc’s too. It can help to keep a journal of how you feel and temperatures to compare back on as each round happens. Everyone is different and everyone gets through chemo their own way, there are no right or wrongs or a one size fits all, you do everything what’s right for you. You are in control, just always keep safe and always ring rapid response if in doubt 👍💕💕✨✨Shi xx
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.
How have your treatments been for you?
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.😊
That is interesting - I have heard of the ROSCO trial - I won't be eligible for it but may be for some others I guess. Well done you for doing it. Years ago I worked bank shifts (I was a nurse) for a company that did the phase three trials for drugs including what became an antibiotic that could treat MRSA - it was really interesting. Keep well and good luck with your treatment as it progresses. xx
I was told about the ROSCO trial by my oncolgist and invited to take part. The hope is that in the future HER2 positive or negative bc which medics feel are best treated with chemo prior to surgery may only require 4 rounds of better targeted chemo instead of the current 3 rounds of FEC followed by 3 rounds of TC. Had I been given TC prior to surgery that may have both shrunk the tumour and destroyed all the cancer cells and I would have had just 2 rounds of TC after surgery. That was the only risk with this trial that I may receive 2 more rounds than normal, but in the interest of science I was willing to help. I've seen that you're in the August group so I'll probably be dropping in from time to time. I know our Feb group appreciate people popping in with tips and advice. xx
Its interesting about the trial - was it your suggestion or was it discussed with you at oncology? Glad you seem to be doing well although have had a long treatment period. Our diagnosis is not what we would want but the support on here has made me realise it is totally beatable. I hope that your treatment continues well and that the last lot of cells are eradicated. xx
Slightly worried about all the comments I see about craving carbs - I really need to watch my weight through this as I am on the chubby side at the best of times!! When my husbands grandson had leukaemia at the age of 3 he constantly craved chips so I know it happens (he is fine now although still eats well). Yes keeping positive is key - made easier by the support on this forum. Many years ago when my mum had dementia I was a member of a forum on the AS website - it helped and supported me through some very challenging times when I felt very alone. The fact that people are out there feeling exactly like you do is, in a way, comforting whilst you would not wish this on anyone. Its a strange thing that you start out on this road alone but then meet fellow travellers that make it easier. Keep well xx
Just back from the Oncologist. She is extremely pleased with my response to chemo as there is already a significant visual reduction in the size of the tumour (it was 6.5cm and felt like an egg). She told me that this is a great sign for a good prognosis for the future. She is also going to change my final 3 docetaxel chemo sessions to 12 weeks of Paclitaxel as apparently there are less side effects. Feeling much more positive now!
I'm from the February 19 group and am also triple negative. It's refreshing to read your positive posts regarding our diagnosis. As I am on a trial my treatment plan is slightly different in that it's chemo, surgery, more chemo then radiotherapy. Basically HER2 has 2 different elements (for want of a better word) in it, one responds well to FEC the other to CT. I was randomised and had 4 rounds of FEC which reduced the tumour from 21mm to 6mm but wasn't so successful at destroying all the cancer cells. I had a lumpectomy and full ANC. I am now having CT every 3 weeks and am due to have my 2nd of 4 sessions this Friday. If the FEC had worked better then I would have just had 2 rounds of chemo. I've kept well clear of Dr Google throughout and have only used this site, Macmillan and CancerResearch UK which is great if you want to see what trials are taking place for TNBC. I know some of you have already joined one of the monthly starters groups but if you haven't then I recommend you join the group relevant to your chemo start date where you will find plenty of support. If you need any information, help or just somewhere to sound off then pop into our February group. There's quite a lot of us in the group so someone will always be on hand to reply. xxx
Hi , thanks for the response and it’s good to chat to someone else in the same boat as me. I have completed 2 of my 7 chemo sessions now and realise that everyone reacts to chemo in a different way. The lady opposite me in the treatment bay told me she had had hardly any symptoms at all whereas personally I have felt pretty rubbish for about a week after both sessions. I had a steep learning curve the first time as I tried to go back to work too early, looking for some ‘normality’ back in my life. This was a mistake and I have now learnt to take each day one at at time and adapt my activities to how I feel that day. I also realised that having cancer is not just about the physical side of things, it’s about mental health too and how you cope with it emotionally. I have a huge amount of support from friends and family which is great and my work have been great too. I also keep a daily diary and print out photos of things that have happened along the way ; my hair loss, getting my hairpiece styled, even my chemo sessions. This seems to help me too.
Fingers crossed you sail through the chemo. You will meet other people getting treatment at each session and it’s reassuring to chat to them and listen to all the nurses banter whilst you are there as well. I always eat like a horse after chemo and crave carbs! It’s like being pregnant again!
Let me know how it goesx
Thank you for this very positive response. I have also used the nurses on this site to answer my questions by email and that has been very reassuring. After 2 sessions of chemo I can already feel a large reduction in the tumor which has made me feel much more positive. I also have an appointment with the Oncologist today and will feel much better once I can put my questions to her face to face. I’m nervous of course but I’m sure she will put some of my fears to bed.
Its good to know someone else with a similar diagnosis to myself especially as you are thinking in such a positive was. Thanks for that, it really helps.
I haven't asked Dr Google as a lot of the advice on here is not to and I am also afraid of what I might see. However, I agree that knowledge is power and that going into this with information gives a position of mental strength. I wish you well on your journey - I hope to be starting chemo soon - its a long time since the beginning of May when I was recalled from screening. xx
Im 45 and I also got TNBC, onc said he will refer me for testing.
I start chemo on Tuesday (6th) getting a bit nervous but glad I’m eventually starting, I was diagnosed in May with 13mm lump, no nodes involved and have a lumpectomy.
I did ask Dr Google and it did frighten me but I also think knowledge is power and every step along the way I had a good idea what would be happening next. I also joined a Facebook group that has lots of knowledgable members!!
hope you ladies are well xxx
i am also triple negative. Had i 2017 and again feb this year.
aged 68 and i was tested for the Braca 1 and 2. Have a 39 year old daughter but luckily i dont carry these genes. Want my daughter to start mammograms at 40.
just had 9 of 12 Paclitaxel and Carboplatin every 3 weeks for 12 seeks.
Whats happening with you ?
mini mad xx 💖💖
Hi, I am also triple negative and also 61 so I guess I don't qualify for the genetic testing either. What benefits do you think there are in getting it done privately? At our age would/could it impact on treatment? I accept you probably have daughters but I don't (my girls are my step daughters) so that might be why you chose to have it done. I am interested by your oncologists comments and delighted for you that you have responded so well to the chemo - wishing you well for the remainder of the course of treatment. We can kick this thing into touch!
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
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?
Thanks for the reply and its good to hear from someone else with a similar diagnosis. I guess it’s wise not to think too far ahead and it’s better to focus on getting through the chemo sessions as best we can. I’m learning every day how to cope with things .
I really hope everything goes well for you . You’re right about the chemo, apparently it is really effective on TNBC. Take care and thanks again for the response.
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 .
Big hugs ❤️
Because I went privately for the test, I had an hour's consultation with a geneticist before I decided to have the test. Triple Negative doesn't necessarily mean I have the BRCA gene, it may just be one of those things. I also have a daughter so was keen to see if there are any potential implications. Knowledge is power and if the tests prove positive, then decisions can be made. Fingers crossed you have a positive response to the chemo - I'm keeping busy by working and enjoying Wimbledon!
Thank you for your response, and I hope your treatment goes quickly for you, it all sounds very encouraging. To be honest , I am worried that my gene test is positive as I believe it puts you at higher risk of other cancers and also has an impact on your children. On a positive note, I am sure that I (and my children) will be under the radar much more if this is the case . I should be seeing my oncologist again soon so want to make sure that I ask all these questions that are niggling away at me.
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. .....
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.