Hello, I’m struggling to find out much about having a basal-like tnbc. I believe its very aggressive,which really scares me. I’m finding the lack of positivity surrounding TNBC esp basal-like is leading my brain off to make up its own stories. There is a TNBC board on here, but even that is scary!!! Can’t help wishing I could take tablets at the end of chemo and rads. Feeling so unkucky
Hi Xena75. I do. My surgeon told me yesterday that most TNBC are classed as basal-like so I don’t think it’s as unusual as you are thinking. All TNBC seems to be classed as agressive but I’ve been assured separately my surgeon and ongologist that it also responds very well to treatment.
Remember that people don’t always post on forums when things are going well, it’s mostly when they need some support themselves.
I understand totally that you are feeling unlucky that there is no follow on treatment, I feel that way too. My oncologist said that there is a huge amount of research currently into TNBC so hopefully that might change in the future.
Ali xx
Thank you for your reply Ali, it feels quite isolating when you feel your the only one, though I know that’s not the case! I think the fact you don’t get so many people posting about it, as it is rarer, by its nature means you don’t get to hear as much good along with the bad. And you are totally right that most people post when they need support, especially on the relative boards. (I think that’s why I quite like this one as it’s more general and lots of people around to boost moral when you are feeling low.) X
Xena I have TNBC too and initially I felt pleased about this - I don’t even know why! But since I’ve looked into it, I’m not pleased at all!
I don’t know about the basal bit as I thought I was told mine was ductal but I could have misunderstood or misheard (I’ve been known to get things in a bit of a muddle).
Nikki xxx
Thank you for explaining. There is so much to learn isn’t there? And on a subject I never wished to know anything about!
Good luck with your chemo… I wish mine were starting soon. I may have another 3-4 week wait according to the oncologist yesterday. Although she has assured me that it won’t make a difference in the scheme of things, it honestly makes me nervous just waiting around. Added to that my breast and armpit and side is all very tender and uncomfortable (especially when I lift things or raise my hand above my head - not easy to avoid when you have a toddler!), I’m just keen to get on with the treatment! There is nothing I can do to speed things up so I guess I just have to be patient (I’m not good at that!)
Wishing you all the best xxx
Also, my chemo will be given before any surgery so the sooner I start (and finish) chemo, the sooner I can get this awful thing cut out of me (and the lymph nodes too) xxx
Honestly it seems to take ages, but when they have all the info there, they move so fast, so be reassured by that.
so it’s the cancer making your side/armpit hurt then if you’ve not already had surgery?
hoe old is your little one?
I too was diagnosed with TN invasive ductal carcinoma.
Basal like refers to the appearance of the cancer cell.
It is my understanding that yes it is aggressive but this makes it more responsive to chemo than other types of cancer as chemo seeks out & destroys fast growing cells.
I had mx followed by 6 rounds fec-t.
My last dose of chemo was Christmas Eve 2013 and I’ve just had my 4th clear Mammo (on remaining boob) ?
Don’t let the TN status scare you, I feel lucky I don’t have to suffer the side effect of tamoxifen & the like for the next 10 years.
And as someone else said once people finish active treatment they get on with living so don’t feel the need to post so often. I get drawn here around September time as that’s when my chemo started.
Anyway I’ve waffles on long enough, best of luck xx
Xena75, good luck for your first chemo. Make sure you come over and join us August chemo ladies on the going through treatment thread xx
Nikki49 - thank you so much for the post, it helps greatly to know there are positive stories out there.
Xena - yes I assume it is the cancer and the lymph nodes (I’m hoping more that they are just swollen due to trying to fight the cancer than that they are all cancerous, although I already know some of them are) that is hurting. It is what took me to the dr in the first place as my armpit felt achy/bruised for a few days so I had a feel around and found a lump in my breast! I think it had flared up because I had an examination at my oncology appointment on Wednesday and lots of prodding/poking in the area! Necessary evil I guess. My littlest is 16 months old (I also have a 13 year old and an 8 year old).
I’ll be thinking of you today and wishing you well xxx
Nikki49 - thanks for your reply, very helpful and so nice to hear a positive story. Great you’ve just had all clear from 4th mammogram.
Nik NiC - thank you, all went well with chemo, having hair cut today and the littles are coming to see the ponytails cut off (for charity) and then my mum is taking them home to wait for me. I’m trying to involve them in the positive things, I’m sure you are the same.
Jumping on this thread diagnosed with a grade 3 Tnbc invasive ductal in April had surgery had some high grade DCIS also and 1 lymph node was told mine was very aggressive had surgery within 3 weeks of diagnosis currently having chemo then rads to follow x from the offset my med team have been very vague about the Tn side of things just saying responds very well to chemo and radiotherapy x they don’t seem to make a very big deal of it actually x which has kind of reassured me as I was terrified when I realities was one of the rarer ones x I am really lucky to be under the top oncologist in my area looking after me, have heard he is up there with the best and he has kind of just said that TN responds much better to chemo than some of the others yes we can’t take tablets but that still isn’t a guarantee of a recurrance so at the end of the day we are probably no worse off than any of the others just not as common, it is scary but I think any cancer diagnosis is and our medication teams really do have our best interests xx take care ladies x
Hi, I would just like to reiterate what Nikki said - most of us don’t really post unless there are problems! So, although I was terrified when diagnosed with grade 3 TNBC in 2013, I am 4 years on with clear mammos and enjoying my life. It’s true that we don’t have the reassurance of taking Herceptin or Tamoxifen afterwards but I decided to provide my own kind of reassurance and have been taking low dose aspirin daily for a couple of years now (as there are trials going on at the moment to see if aspirin is effective) and I have also started taking turmeric tablets, as well as trying to be reasonably fit and watch my weight as this could help.
All the best for your chemo/surgery/radio everyone.
Rachel xxx
Yes Rachel totally agree with you my diagnosis is no more scary than anyone else’s you have alot of anxiety in early days but that passes as you start your treatment I’m very positive about the whole thing I have a fantastic team looking after me and you a proof 4 years in the clear xx I prefer not to stay on the TN thread because as I said yesterday to me all of us are going through same journey and there is some very out of date info on TN I trust my onc he doesn’t make a big deal about it so I’m not going to xx take care ladies x
Thank you for your reassurances ladies x
Hi jencat, it went ok,I had a reaction but apparently this is not uncommon. They delt with it swiftly so now I am nervously awaiting the onset of side effects.? thanks for asking x
I’ve just caught up on youbscans thread also jencat,glad all went well
Thank you Xena75, Nik Nic, Nikki49, Mishy18. I’m feeling really tearful & wobbly tonight & lost my positive head. I haven’t even joined The TNBC gang yet…but I’m preparing myself for meeting on 7th Sept. Was told last week that I am ER negative…but waiting on HER2 Results. It’s so good to read your comments & reminds me how important it is to just crack on with it. I’ve been feeling very positive since first diagnosis…but keep thinking this outlook can’t last…can it??? I fear I will not be able to stay this strong. Good luck to you all with your journey. Nikki49 thank you for sharing your story.
Scooter