Hi All
This is the first time I have been on here. I have just been diagnosed with a stage 1, Grade 3 Invasive Ductal Carcinoma TNBC. They are starting me on FEC-T chemo ASAP and will do lumpectomy or mastectomy afterwards. I will also have Genetic Testing done. I have a 6 year old Daughter and I am terrified. All medical staff are positive and say this is curable as this type responds very well to Chemo. Everyone who knows anything about this is positive but I am scared and struggling…
Can anyone offer some help ? Thanks everyone x
Hi KLF
Sorry that you’ve found yourself here, you’re in the right place I found it invaluable when I was diagnosed.
I too had TN idc, except I had surgery first then chemo.
I had 6 rounds of fec-t my last dose was Christmas Eve 2013.
Get yourself into a monthly chemo thread relevant to the month you start chemo - you’ll find it in the going through treatment section of the forum.
My group of 30+ still chat but now in facebook.
Treatment will seem never ending but I just wanted to let you know that there is life after chemo.
I’ve lost the 2.5 stone that I piled on during treatment (the movies lie - chemo is not a great weight loss program ?). My hair, eyebrows & lashes have all grown back, I’ve been to New York this year a trip that had originally been planned for Dec 2013 & we all know how that ended.
I’ve just had my 3rd annual all clear Mammo since treatment.
I’m not gonna lie chemo is tough going, some go through it easier than others but you’ll get there.
Best of luck x
I also had genetic testing as my paternal grandmother died in her early 40’s of breast cancer & my father also passed away of cancer - we never knew he had it until 3 days before his death.
Thankfully my result came back negative x
Hi Nikki
Were you triple negative also ? X
Yes triple neg
To say i am all over the place and terrified is an understatement. I have loads of support but at the same time, I feel so alone.
My experience of Breast Ca has not been a good one as I lost a very close friend in Feb this year - also TNBC.
All the professional’s I have spoken to arent positive that this can be cured with treatment - treatable and not life threatening is what they are saying. I am struggling to remain positive as often as I would like. I am due a routine breast MRI and CT next week as well as meeting with the Oncologist for the first time. Any tips / advice would be very much appreciated. The Breast Care Nurse said people “DO beat this and live to be old ladies” Talking to you helps Nikki as what I need is positive reassurance. Thanks for getting back to me with your story xx
KLF, you are not alone. I was diagnosed with TNBC last week following a lumpectomy and prior to that two separate biopsies which both came back benign. (The lump was removed as they were not happy with the shape of it.)So it was a shock to say the least.
I have a 3 year old boy so I understand your fear.
I am having a mastectomy and lymph node check to see what stage I am at but I know I am having chemo as a minimum. I am getting a second opinion today as I am unsure whether the treatment is the right way round (should I be having chemo first?). I am anxious as 2 months have been wasted already with biopsies.
A friend of mine is putting me in touch with a tnbc survivor of 5 years to talk about her experience. I’d be happy to share any tips she may have with you?
I vowed to be more positive yesterday after my son asked why I kept crying. We moved house last Friday so talk about a stressful week!
We must stay strong for our kiddies xx
Hi Kat. Thanks for getting back to me, really appreciate it. Would love to hear from the girl and her story - thanks for offering to share that with me. I don’t know if it’s the done thing but I’d be happy to swap email’s / mobile numbers to keep in touch ? Thinking of you and your gorgeous wee boy. We can do this !!! Xx
Hi KLF
I can give you the email address I use for junk mail and then I can give you my proper email address or phone number!
It’s katvs33@gmail.com
It would be lovely to keep track of how you are getting on. Not heard from that lady yet but I can keep you posted Xx
Hi. I have also just been diagnosed with TNBC - Stage 1, Grade 3. I had a lumpectomy last week to remove the tumour and am going in again next week as they found another very small lump. I have not yet been offered chemo and there is some question in my surgeon’s mind as to whether it will be necessary. I will be going for the genetic testing. I just wanted to understand what people thought about having chemo or not? I have two teenage kids and was sort of thinking I’d chuck everything at this - chemo, radiotherapy and, if BRCA positive, double mastectomy and ovary removal as well.
Hi Dragonfly
Sorry to hear of your diagnosis. There’s so much information to take in; I am 5 weeks since my tnbc diagnosis and I’m still learning new things every day!
I got the impression that chemo is always recommended with tnbc even when the tumour appears localised? If you are not sure, ask for a second opinion. I did and although chemo was always on the agenda, I started my chemo first, before having my proposed mastectomy (my choice to go beyond a lumpectomy). I am one chemo session down and 5 to go!
I think you have to give yourself the best chance of it not returning and this type of cancer responds well to chemo.
I am also having the genetic test done so this gives me time during the chemo to decide best way forward with the surgery.
I hope you get a treatment plan arranged with your health team. I felt better once I knew what was what and dates were in the diary. Best of luck with everything xx
Hi Dragonfly.
From talking to my Oncology Team, neoadjuvant Chemo is used prior to surgery for people with TN IDC. They do this to shrink the tumour as much as possible so that minimal surgery is required (hopefully - depending on Genetics)
I’m at a similar stage to Kat33 - had 1 cycle of FEC Chemo and 5 to go !
If you have any questions, ask your team. I always go to appointments with a list of questions. Got to write them down or I’d forget.
I’ve had the genetics blood test and am awaiting the results. Meeting my surgeon tomorrow and am planning to ask for a double mastectomy anyway. Psychologically, i want them gone and I’m confident he will help me make the right decision.
Keep in touch and wish you all the best. It’s an emotional rollercoaster but plenty of lovely ladies on here and on the secret FB page to ask any questions xx
Hi I was diagnosed tnbc mid January and my surgeon advised me to go for left mastectomy with chemo after. The tumour was 31mm with no node involvement I was prepared for a double mx but surgeon advised me this was not necessary however I have not had the genetic test and I am pushing for this but my age of 59 means I do not fit the criteria for this. I start chemo on Monday FectT but I have had a few problems with the first oncologist I saw and changed but still felt I needed a second opinion and I went to London for this today which was very reassuring. Ask lots of questions and don’t be afraid to go for a second opinion look up Team Verrico they can help. This is all very scary but getting the right information is key and finding the right oncologist that you feel happy with there are lots of ladies who have survived many years after their diagnosis why won’t that be the same for you loads of love and hugs x
As an added further to ANYone - it makes absolute sense to a surgeon, to opt and ask for a double mastectomy, where it’s genetical. But, not when it isn’t. I had a primary in one boob 2006 > mastectomy. Had the absolute misfortune to have another “primary” found and diagnosed 9 months later in the other (NO genetics) > mastectomy. Was just down to bloomin bad luck. Doesn’t mean ANY of you will experience the same!! The surgeons will always fight ANY request to remove a healthy breast, unless there is genetic evidence to support doing so.However, having said that, my X neighbour fought and fought her corner, to “elect” to have her other healthy breast removed (no genetics), underwent psychiatric evaluation for, and the sugeon eventually gave in to the removal of her healthy breast!!
Love to all of you
Dellywelly xxxxxxxxxxxx
Hi
I was diagnosed with IDC in left breast and after sentinel node biopsy micro metastases in both nodes they removed. Main tumour 27mm plus 9 smaller satellite ones covering about 7cm in total.
I find it quite unbelievable how different hospitals have such different advice and protocols. Even ones who work closely together. I was initially diagnosed in Bradford and advised immediate mastectomy 6 rounds of chemo and then radio. 2nd opinion a few miles down the Road in Leeds at Yorkshire Cancer Centre advised Neo adjuvant chemo (before surgery) reviewed by breast MRI after 2 and 4. Then mastectomy then radio. Explained that especially as lymph involvement chemo acts as a ‘mop up’ of stray cells and hopefully shrinks tumour so they get best result and clearance at surgery stage. Also they can monitor the effect of chemo on the cancer and if necessary change chemo or go to surgery etc Made more sense to me and we’ve gone with that. Very reassuring to know after 2 rounds main rumour shrunk by a CM and shrinkage in smaller ones too. Surgeon in Leeds said if there’s no change or worst case scenario growth even then no pint in subjecting someone to 6 rounds of such brutal treatment.
Does this worry anyone else? The different approaches? Bradford seemed like a ‘one size fits all’ which obviously is proven to work for most. And Leeds more tailored to the individual. So hard to work through this minefield when your head is all over the place.
Thanks for reading
Vicki
My grade 3 tnbc is shrinking a little12 days after my first chemo.
About 100 hairs fell out yesterday so I thought that something would happen soon.
The chemo is not pleasant, but to put it into context, it is no worse than a very bad stomach bug.
Crikey Vicki - Thanks so much for letting us all know your findings. Yeh, had I been in your postion, I’d have been appalled/shocked, and it shouldn’t be that way. The sad but fortunate thing is - you had the feeling/“sense” to go have a 2nd opininon elsewhere. Many women wouldn’t have. I so understand you, in your saying “when your head’s all over the place” - isn’t it just.Bombarded in fact. It may be beneficial to others, to make these differences known elsewhere, as well as on this Forum, because in “reality” the care should be STANDARD throughout the country, shouldn’t it. Glad you’ve opted for the Leeds approach. All good healing wishes, strength, and a speedy recovery to you Vicki.
Hi Caroline - So pleased to hear your tumour is shrinking, but mmmm, I think you’re being somewhat demeaning of your and others chemo, in your similarity to a stomach bug!! My good wishes to you too, for your recovery.
Love to you both and everyone else
Delly xxxxxxxxxxx
Ooooo-errrr - Sorry girls, didn’t mean to set anything off with ref to “stomach bug”. Wasn’t meaning it in a “strong” way, was just “gently” picking up on a point, of Caroline making light of it for herself really. Plus having known other peoples chemo totally knock them for six, as sounds for you 1852, and sometimes for a long time after. Hope you’re well recovered now 1852 and have been able to move on from such a traumatic experience, albeit perhaps not as the person you were, but with different “strengths” gained from it.
Love and good wishes to everyone
Delly xxxxx
Hi Delly and Caroline I had my first chemo on Monday and so far no real side effects everyone is of course different and I might yet get all the side effects going but if it is possible to make this scary process a bit less scary for those facing this and to tell another story I think it is a good thing. No one going through this is taking it lightly and everyone is scared to bits but we draw our strength from each other and we need to know the experiences both good and bad to get a balanced to it and to give support to those who are suffering side effects as that could be me in a couple of days or on my next treatment but positivity is key to this and if hope can be given and a bit of a lighter side I am all for it along side the scary bits love to all going through this
Hi Onwards and Upwards - Erm, I was also referring to 1852’s “feeling a bit insulted” and the point “she” was making, having had tough time of it, along with many others. Guess it’s a very personal thing as to whether you’d prefer to know what the worst can be and then be better prepared for it to be, or be pleasantly surprised when you don’t actaully experience the same. Just had an eye op. Everyone told me it was painless and a “walk in the park” - even the eye medics. Wasn’t and a second wasn’t, and I have a high pain threshold, and a medical background. Despite so called “numbing” eye drops (usually sufficient, I was told), had a dirty great big needle stuck in me eye, and then waddled about. Not at all painLESS. Would have been a much easier experience for me, had the eye medics warned me that it wasn’t going to be comfortable - there were complications in my case. I’d have been more prepared for it being more traumatic, as it was!! The whole BC experience is traumatic, physically and mentally - whether its a lumpectomy, mastectomy, with or without rads and chemo. So why even try and dum it down. The supports there before and AFTER however and whatever. Sometimes better to keep it “real” though.