New TNBC Diagnosis

[AnnDaw]

Hi Delly where are you at with your journey as you were posting when I first found this site. What is the problem you've been having with your eyes if you don't mind me asking. I lost touch with things for a while as everyone seemed to go to Facebook and it went really quite on here. Xx

[AnnDaw]

Hi Annie A so pleased you feel a bit better about your diagnosis now. Thanks for the guardian angel compliment too. My friend Bev who I met during chemo bought me a lovely guardian angel keyring for my birthday last year and she hangs on my bedroom door handle and I touch her every night before I get into bed and ask that she keeps us all well. Might seem a bit daft but it's just me being me. Do you have your treatment plan in place yet?. Xx

[AnnieA]

I am so glad Ann found me too. I've spend the past 3 weeks thinking my bc was Stage 3 and know one has corrected me otherwise. I've been reading up all there is to know about stage 3 so obviously I've been in turmoil. When as a matter of fact my stage is not yet known. It might only be a small thing but it sure has eased my mind. I think Ann is my guardian angel 😇

[delly]

AnnieA and AnnDaw - I'm soooo glad you've found each other.  Brings it all to the fore, as to why this Forum is so incredibly valuable.

Much love to you both

Delly xxxxxxxx

[AnnDaw]

The downside to trip neg is that we dont have a daily pill we can take to keep the bugger away but its said that chemo is more effective for us. I do what i feel is right for me and after the very emotional first two weeks following my diagnosis ihave been strong and positive. I wont pretend its all easy like losing hair and stuff like that but its all very doable and you will cope with it when it comes honestly. There are some lovely wigs and i still wear mine sometimes now if i want to go long. Put your trust in your breast care team they are the experts and we get gold standard treatment. You sound like a positive person and your husband sounds supportive so all will be good. Ask me anything anytime and i will help if i can as will everyone else. I will also try and get my head round the pm bit as well. Xx

[AnnieA]

Not to worry Ann, I was just hoping for some more insite on this stage/grade thing. I could have sworn I was told stage 3 but I really wasn't there is nothing anywhere that mentions stage, just grade. Is this a good or a not so good thing ?
X

[AnnDaw]

Oh Annie just want to say im not sure how you go on with tbe private messaging thing i can only do the straight forward stuff. It says in my email that i have a pm from you but not sure how i find it. I'll have to get my clever head on.haha. x

[AnnDaw]

Hi again Annie. In my case im triple neg had right mast oct 2015 followed by 6 fec t then nodes cleared end of april last year then rads. I went back to work last sept and am really well. As i had nodes involved and my lump was 5cm my diagnosis was grade 3 stage 2b. I take turmeric and vitamin D3 and omega 3.Eat plenty of berries and other fruit , plenty of broccoli and other green veg. Apart from wacking 1and a half stone on over the last 18 months im brill.I was size 8 when it all started now im ideally a 12 but will hopefully sort that out soon. Im 57 going on 40 so trust me you will get there and be fine lol. Xx

[AnnieA]

Oh my god Annie I have just looked at my notes and it does say grade not stage 😕 please could you give possible give me abit more information on this and how wrong I have actually been, even if it's through a private message? I can't even find anything that tells me my stage . 😕

[AnnDaw]

Hi Annie A are you getting stage mixed up with grade. The reason I ask is because all triple neg b/cancer are grade 3 which is very different to a stage 3 cancer. I was diagnosed with 5cm lump with node involvement so had right mastectomy Fec-T chemo followed by node clearance and 15 rads. I have my 1st yearly check on may 5th and am really well. You will do fine as im sure they told you grade 3 and not stage 3 Annie. Xx

[Raitchr]

Hi I have joined a Facebook closed group called Triple Negative Warriors UK. There are other ladies on there who have had or are going through treatment for triple neg like us. Ask to join, there is a lot of helpful ladies and info for this.

I was diagnosed 13 Feb, treatment plan 6 March and mx 17 March, starting chemo in next few weeks.

Best wishes

Heather

[AnnieA]

Hi ladies, just discovered today that my stage 3 BC is triple negative. I felt okay about this until reading some threads on here. Is this really as bad as I'm not imagining. Please help x

[delly]

Hey Maria, you're welcome. I just hope, want and wish you to be well.

I apologise. You were not being ignored, just that Vicki's history is so bloomin tragically awful and beyond belief, don't you think.

I said about hoping you return to work soon, because of your reference to it being "isolating" - and can so appreciate what you feel in that respect. Hope you get through it all soon, and regain strength. Plus get back to work soon, to bring you back to some kind of "normality" and camaraderie, hopefully give you a lift out of the s - - t.

Much love to you and all others on here,

Dellypoos xxxxxx

[Maria12]

Thank you delly xx

[delly]

Ps. Love the Wonderwoman 'T' shirt Vicki !! Hope you can keep maintaining that sense of humour - counts for and helps us a lot through and with all this brown stuff of life. xxxxxx

[delly]

Jeeez Vicki.  I'm actually lost for words to give and say to you, as to what you've been through and unnecessarily put through. Am no way surprised your trust is "non existent. That must have been such a huge massive shock and a huge massive set back to you and your life, at such a young age too at 19. And you're now only a young 44.

Yes, we hear, or read of occasional misdiagnoses. You, unfortunately, are giving us direct experience of such. And your attitude is mine exactly, "preferring to know the worst case scenario, then anything better is a bonus"!

You, my dear woman, make me feel very, very lucky. But more importantly, very HUMBLE and sympathetic to you.

I so very hope and wish you to be well. I'm sending you a long, warm, tight, loving hug with my wishes for a very speedy recovery. I shall now read your blog.

Please do keep us in touch with how you're doing, will you.

Maria - I hope you also recover quickly and that you're back to work soon.

Much love to everyone

Delly xxxxxxxxxxxx & xxxxxxxxxxxx 

[Maria12]

Hi vicki , just been reading through your blog , despite it being scary to read its good and open, all i heard when i was diagnosed in jan was how people seemed to breeze through chemo and still worked .The reality for some of us is very much different , think i was hoping i would be one of those who would breeze through it lol no such luck .my chemo was meant to be finished mid may lets say its looking more latter half of june due to infections and delay .It seems to wipe me out and the filgristrim injections feel like a head on with a bus . Ive been advised against work even if i could do it , which sucks can make life a little isolating . Best wishes for the rest of your treatment x

[Vics1972]

Yes it is scary that opinions as to course of treatment differ so much. Very hard for people who are like rabbits in headlights to think of a 2nd opinion but I had a devastating cancer misdiagnosis 25 years ago ie was treated for agressive bone cancer age 19 - 6 rounds of awful chemo, leg amputation and much more only to find it was benign after it all so my trust is somewhat non-existent! Both times I've been knocked for 6 with side effects from the chemo but this time with a raft of drugs we just about keep the puking at bay and the bone pain manageable although on days 3 and 5 have to take some oromorph.

It is very tricky as everyone reacts so differently but also the regimes vary hugely. I was well miffed with a certain BBC journalist doing live broadcasts from chemo making out she breezed in and out of work for chemo, the cold cap is a doddle and swishing her blond hair around!!! So I vlogged last cycle as well on my blog to show my reality in case anyone's interested it's www.carryoncancer.blogspot.co.uk

I prefer to know the worst case scenario then anything better is a bonus! I tried to take the other approach after the sentinel node biopsy i.e. Only 1 in 3 find it's metastasised to the lymphs so I thought right I'm going to be in the 2 in 3 where it hasn't....wrong! And I was gutted whereas if I'd expected it to be it wouldn't have come as such a shock.

Hope you're all managing 'ok'. I'm day 12 post chemo now so feeling quite well (although quite knackered and annoyingly breathless all the time! Anyone else??)

MRI tomorrow, stitches out where they removed my infected Hickman line and preassessment for my PICC line fitting next week.

Vicki x

[delly]

Mornin lovely ladies

O and U - Eye's doing okay so far thanks. Only threw it in as a comparison. Didn't help that the pre-op notes stated that they were an eye hospital that didn't use sharp needle anaesthetic, and then the medics didn't inform me that that was they were doing. That was the phrase I was looking for 1852 "forewarned is forearmed". Thanks for that. Glad to hear you're coping sweetie.

O and U - really sorry to hear about your lung complications. That's really tough for you darlin girl. Is it something such as Cystic Fibrisis. Got my fingers crossed for you too, that you don't have any lung infection complications and the braver onco's gamble pays off for you.

Wishing everyone well 

Lotsa love

DoolallyDelly xxxxxxx

[1852]

Yes delay I am doing ok any after effects are things I can live with . Sorry you had eye problem on top of this . I hope everyone gets through with minimal side effects I wasn't bad on e/c it was taxol which flattened me and I also have high pain threshold usually but like to be told the facts and warned as I think forewarned is forearmed hope everyone as a good day x

[Onwards and upwards]

Hi Delly sorry to hear you have had the added complication of an eye operation. I totally agree that it is always best to be prepared for the worst but hopeful that it might not be and a little bit of optimism can get you through the scary bit. As you say we are all on a journey but taking slightly different paths. I have the added complication of a serious lung disease and my first oncologist told me I needed to seriously consider the risk of recurrence of cancer against the high risk of the chemo damaging my lungs I could die of infection. Second opinions and change of oncologist and I am on the chemo road the fact that the side effects are not as bad as I feared is a bonus but i know it can all change and fingers crossed I don't get the infections my new oncologist is throwing everything at it. Love to all going through this and all the posts have been helpful

[delly]

Oh, and a mere stomach bug doesn't tend to cause hair loss. Does it? Perhaps a bit of an understatement by Caroline then? O and U - sincerely hope you're one of the "luckies", in that your chemo experience "doesn't" get much much worse than your 1st treatment. Also hope Caroline's doesn't as well xxxx

[delly]

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.

[Onwards and upwards]

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

[delly]

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 

[1852]

Caroline I think your comment no worse than a stomach bug a bit insulting to people like me who went through a lot of problems with chemo it is not the same for everyone we are all individuals I don't scaremonger or try to frighten people either . I am three years passed diagnosis I had two lumps in one breast so my trust recommend mastectomy followed by chemo . It is doable but challenging at times good luck all you starting on this journey x

[delly]

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

[Caroline99]

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.

[Vics1972]

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

[delly]

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

[Onwards and upwards]

Hi Delly tthank you tnbc is  just short for triple negative breast cancer,  re double nasectomy just wanted to ensure no chance of recuurance but surgeon said this course of action was

not necessary

lots of love x

[delly]

Hi and welcome, onwards ans upwards. Forgive me, but my BC is of more archaic days (2006 and 2007), so I don't know what tnbc means??!! Am not understanding why you were prepared for DOUBLE mastectomy?? when it was initially found in one breast? .It may never occur in the other. That's a large tumour tho'. I totally agree, the right info and an onco you're comfey with is key, and not to be afraid to ask, push, seek 2nd opinions. Please keep us in touch with how you're doing OandU xxx

[Onwards and upwards]

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

[Gracie]

Hugs and best wishes to all who find themselves here.

Just to say that surgery before chemo isn't always how it's done. I had surgery first. I had a 1.4cm lump in the breast and another the same size under my arm. I suspect they thought I had a serious lymph issue, but it turned out that only one lymph node was affected. The little trooper swelled and swelled but didn't appear to let anything through. I started chemo last week.

Also, a double masectomy might not always be the way forward. I had ER/PR breast cancer in the other side last year, and discovered this one at my first annual check-up. I have had two lumpectomies and a node clearance. My initial reaction (and that of my husband) was that I wanted them both off. My surgeon has persuaded me that this will not increase my chances of survival at all. It doesn't appear credible, but I have researched it myself and have spoken to advisers on this site, and everyone is saying the same thing.

However, how you feel yourself if a very important issue which your doctors should take into account.

Good luck to us all.

Grace xx

[KLF007]

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

[Kat33]

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

[Dragonfly]

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. 

[Nikki49]

KLF - you're very welcome, I know when I was in your position I craved positive stories.

Please don't get hung up with the word 'cureable' as most professionals won't use the word.

Treatable & no evidence of disease (NED) are their preferred terms.

The thing is no-one knows 100% if it is or isn't going to come back but neither does anyone know for sure that you are not going to get runover by a bus tomorrow.

Do what you can now to live & enjoy life in a safe & healthy way.

take care x

[Kat33]

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

[KLF007]

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

[Kat33]

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

[KLF007]

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

[Nikki49]

Yes triple neg

[KLF007]

Hi Nikki
Were you triple negative also ? X

[Nikki49]

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

[Nikki49]

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

[KLF007]

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