Diagnosed yesterday, triple negative breast cancer

[viktoria]

I suppose I'm still in some kind of shock. I feel fine actually but at the same time I feel like the rug has been pulled from underneath me.

I feel very lucky because I have a break in work and that was the only reason why I bothered contacting my GP about a small lump. Had no other symptoms.
Had a mammogram and ultrasound and was surprised I was told they wanted to do a Biopsie as well.
And yesterday I received the diagnosis.

It's grade 3 but I don't yet know what stage. I'm off to have an MRI done in an hour.

As I said, I feel very lucky that I had it checked out when I did. I also have a supportive husband, and two supportive (young adult) children, 22 and 24,

But obviously I'm also worried. My life will totally change. Hopefully only for the next year. The consultant told me I'll likely have 6 months of chemo and then surgery, and I should expect for all the treatment to take 1 year.
I work freelance and am the main breadwinner so the money side does worry me.
But not as much as the prospect of chemo.
I was wondering if anybody else has had triple negative breast cancer and can share any experiences re chemo

@pinkflowers80i definitely sleep badly when I’m on steroids. And right at the start of my treatment (and before) i also had massive anxiety which messed with my sleep. Funnily enough since i started treatment my anxiety has (nearly) disappeared.

interesting about the cold cap. My hair is much thinner now at the top. I wonder what they’ll say tomorrow at my chemo about it.

all the best for your mum!

@BangersndmashI started doing yoga at Maggie’s at St Bart’s and was given great help for my neuropathy in my feet.
stand or sit and have a tennis ball under your foot. Move the ball following imaginary lines from your big toe to your heel, then back to the next toe, back to your heel etc
It’s done wonders for my neuropathy (which had gotten worse)

Just a general update, in case it’s useful for anybody:
had 4 cycles of EC (and pembro), last one on the 22/4
lost most of my hair
really hit a wall mentally after 3rd EC. Felt utterly despondent. Started a few sessions of counselling (through Future Dreams) which initially helped lots but which i stopped after about 4 sessions. I think i just didn’t really get on with the counsellor

3 weeks after end of chemo my husband and I went to Italy for a week which was lovely.
Feel like my tastebuds have come back. Water tastes normal again.
Felt increasingly stronger
1/6 I had surgery, lumpectomy and removal of 4 lymph nodes. Since then I feel very fatigued; healing seems to go well but I’ve developed a seroma under my armpit which is annoying rather than painful, but i hope i can have it drained

My hair is slowly growing again, no bald patches anymore, but i still am a few months away from when i can imagine going out without a scarf or hat on. which still upsets me.

I am cautiously optimistic that the hardest part might be past now.

next steps will be radiotherapy and then standalone immunotherapy. Possibly more surgery.

Tomorrow I’m getting my results. Don’t feel too anxious as I managed to stay quite pragmatic throughout. This time!
No need to worry as it won’t change anything, other than ruin my day

Hi, thanks for the update. I’m having double mastectomy with reconstruction soon. Bricking it but hey ho.

also having radio and immuno post surgery. We walk a very similar path. For me, post chemo I’m still really struggling with mouth ulcers/dry mouth and AWFUL pigmentation on my skin, I just feel like a bag of ferrets.

A friend of mine had her double mastectomy and reconstruction (she got implants) 3 days before i had my surgery and even though what she had was much more extensive than what i had, i feel our recovery is pretty much the same.

i was so anxious before my surgery. The day before my whole body hurt. I felt like i was coming down with a flu. But no temperature. But I was thinking “do i need to cancel the surgery?”
On the day of the surgery I woke up and felt absolutely fine. It was all “just” anxiety.
I hope if there’s one thing i can take away from all this then hopefully it is “don’t waste energy to worry about it beforehand. It never is as bad as you imagine”
remind me of that next time I come to a hurdle hahaha!

Right after my last EC, I was thinking “now I get why they only give you 4 of these”
It really felt like any more chemo would just break me. Weird as I can’t pin it on one specific side effect.

How annoying with the mouth ulcers. Can the cancer nurses not suggest anything?

End of chemo is such a big achievement. Please give yourself credit for it. You did it. Once surgery is over it’s another massive chapter behind you.

all the very best!

I hope you are still doing well? How did your results go and surgery recovery x

@ArthurnewyorkcityI’m having a fantastic day… after a real roller coaster ride.
Had a lumpectomy and 4 lymph nodes removed on the 1/6 and there was no cancer in my lymph nodes but my margins in the breast weren’t clear.
So I had a second surgery on the 13/7.
Pre- surgery during blood tests it was discovered that my calcium was very high, so I had a PET scan a week after surgery.
I received an all clear in terms of the surgery, but during the same phone call I was told that they found nodules on both my lungs and in my chest and that it could be metastatic lung cancer which would mean it’ll be stage 4 and terminal, or a new cancer, or an auto immune disease or an inflammation.
i had a bronchoscopy and after what seemed like endless waiting, i found out today that it’s not cancer, but just an inflammation.
I’m beyond relieved.

Now I’m just waiting to get dates for when my radiotherapy can start.
I’ve also been referred to the lung, the kidney and the endocrine clinics to work out how to deal with the inflammation and also to further investigate the calcium issue.

But all good. I feel great!

Bloody hell @viktoria what a time! I’m so glad you’ve got the “all clear” from the C and the rest is manageable. I’ve just started radio today. OK so far… but I feel I may be speaking too soon…

@viktoria thank you for your reply. What a roller coaster of emotions! Im so glad its not cancer again. Ive got 2 ec left before surgery and the dreaded return is already giving me anxiety but trying to remain positive.

@Arthurnewyorkcity keep going you’re almost there! You can do it! I’m recovering from surgery well. It’s been slow, but getting there and starting to be pleased with the results now and started radio 🙏🏽

@Bangersndmash thank you thats so kind and wishing you a speedy recovery! My oncologist told me after surgery the team that checks for clear margins are really behind so could take 6 weeks to even hear. God knows how much spread it could do in that time

@Arthurnewyorkcity sorry not with you… What stage is your diagnosis? Is the chemo not hopeful to stop the C? Is your treatment to cure or to control? And are you not having a scan post chemo to see how reactive you have been to the treatment?

what surgery are you planning on having?

my results were actually brought forward, I had an appt at 4-5 w but it was brought forward to 3w (for good news… as my doctor was going on holiday 😁)

@Bangersndmash stage 2 based on large tumour size, no spread. Ive had 12 lots of pax, (carbo and immunotherapy every third week). I had a midway scan where tumour was no longer measurable on ultrasound. Feels lumpy now but dr thinks its scaring. Awaiting mri and surgery early November. Currently got 2 ec chemo left 3 weeks apart. But ive seen how insanely brutal tnbc and how it likes to come back. Im just scared I guess. The thought of it being cut out then taking an eternity in my local hospital before I can have radiotherapy etc. Ive been advised a lumpectomy so I can have radiotherapy. Then ill have a further 6 lots of immunotherapy.

Im so glad you got your resulrs quickly and are doing well! Are you completely finished with treatment now?

No not finished, just started radio and got immuno to do after that, should hopefully be done by the end of the year.

I requested / opted for a double masc with recon for that reason, I want to eliminate the risk as much as possible. Are you a genetic carrier that’s predisposed to get TNBC? I am unfortunately.

i don’t think they’d be concerned about a 6 w wait for your results considering you will have finished the bulk of your treatment?

that’s great news, I also got a complete response and no visible c found. It appears they know how to hit it hard and they know what they’re doing with this regime.

Bless you, I admire your courage. You sound so incredibly brave. I am not a carer of gene, just unlucky. I was tomd and I quote 'a lumpectomy is your best chance of survival' so I guess ill do as they say and hope for the best. Ec is kicking my back side though. How many sessions of radiotherapy do you need? I hope it goes ok

Oh that doesn’t make much sense… surely a mastectomy would be because they’re removing the breast… I opted for a double masc for that very reason and removed one healthy breast. But I suppose everyone is different, and alas, I carry the gene and was told it was 75% likely to return so I whipped them off!

EC is the absolute pits, it’s the worst. Out of everything I’ve done so far that was the most challenging and would happily take the palci over that. I’ve got 3 weeks worth of radio as a preventative measure, what have they said for you?

And that thank you, very kind of you to say. Although I don’t feel I get much choice in the matter, as you well know; you just have to get on with it.