Coming to terms...and learning new terms...

Hi,

I was told last week I had breast cancer following a biopsy, but only told this week it is stage 3 (or was that type3??) and aggressive, but no other info really. I know my lymph nodes are affected cos I felt the lump there first…I’ve been reading posts here and realise I’m going to have to get up to speed with all the expressions, terms and abbreviations… so much to take in!!!
I’ve been offered neo-adjuvant treatment, (neo-tango) found a bit of info on other pages here, but just deciding if I should go for that, or standard surgery (mastectomy) with chemo and radiotherapy…they gave me the choice, like I would know better than the experts…heck what a decision :o(
No doubt see you all around here for quite a few months to come, take care all.

CD

Hi Crazy Dancer

Firstly sorry you are having to join us here, but rest assured there is loads of support on here from others going thro it.

I am fairly new to this too, had my first chemo on Monday. Like you I have grade 3 aggressive invasive ductal cancer. At present they hope there is no node involvement. They gave me 2 options - mastectomy, chemo, radio or chemo , hopefully lumpectomy (alltho no guarantess that mastectomy still not needed) then radio.

Like you, they said it was my decision - and they would not sway me either way. The way I saw it was there is no difference in outcome for either option i.e. no better prognosis or risk of recurrence with either option. I went for the second option - having chemo first.

I had a big long discussion with my breast nurse today and she actually turned round to me and said she would make the same decision as I did for lots of reasons. I dont know how old you are but I am 39, so trying to save the breast is probably better from a psychological point of view. Also, half way through chemo, they do another mammo and ultrasound scan to see how the lump is responding - if it doestnt respond well, they change the chemo drugs - at least this way they can sort of ‘play’ with the chemo drugs if you like to get the best response. Because of my age and grade of cancer I definately would have needed chemo whatever - and the amount and type of chemo is exactly the same.

There is loads of information to take in. Only you can make the decision as to whats right for you. Before your nextg appointment just write down any questions you may have or you will forget them when you get in there.

Hope this helps even a bit
Let us know how you get on
Take care
Fiona
x

hi fiona and crazyhorse

i,m so sry your here but i,m sure you will get all the support you need, i found it very warm to have the love, i,m in the testing stage, i had my lump drained but the lump remained so i go bk a week today

poss for a core biopsy

so i pray you both get all the support you need on this forum

hugs of love
cee

Hi Crazy Dancer
Sorry you find yourself here, but you are in good hands. I am a relative newbie, only a month or so. Also having neo-adj chemo with mast then rads. I have triple negative tumour which means it does not respond to hormone treatment or herceptin, so no extra drugs for me!!!

I had my first chemo 2 wks ago (tried the cold cap to see if hair will stay put - still there so far!!!). My first experience of chemo was not too bad, much better than I expected. So try and remember that…

You can ask any daft question you like on here and loads of people will answer, it is great for letting off steam when you are upset too.

Ceegra - good luck with the tests, hope you get some good answers!!!xxx

Fiona - this doesn’t apply to me as I definitely have to have a mastectomy, but you should check out another older thread about marking the tumour - will find the name of the thread and post it on here. There was some good advice on there as some people have found if their tumour shrinks and almost disappears and it has not been marked, a lumpectomy is not possible and they end up having a Mast anyway when they were not expecting it. If they mark the tumour then they can still remove the correct area and surrounding tissue.

Cheers girls
Speak soon
Ali
x

Hi
Dunno if the link will work - but if not it is on page 5 of the ‘Undergoing treatment’ section called
‘neoadjuvant-chemo-a-warning’.

breastcancercare.org.uk/bcc-forum/discussion/11288/neoadjuvant-chemo-a-warning/#Item_8

ty beastie, it really helps hon i am praying it will be good and not bad, do you have to wait over a week for core results what are the ones where you wait at the clinic and get the results in an hour??

bless you
cee

I had to wait 6 days for my core biopsy, dunno which results come back same day - wasn’t given that option.

Ali
x

Thanks for all of the info, advice and support, its great to be able to “talk” to people in the same boat… and thanks Ali for that link, that’s just the sort of stuff we need to know at the outset. I have been told that due to my size (or lack of it!) I will still have to have a mastectomy, as there would not be enough viable tissue left, but having done some research today I can still see benefits to the neo-adj method, so have decided to go that route. I know my tumour will not be responsive to hormones, but no-one has talked to me about Herceptin yet…
Good luck ceegra, hope your results are good! And Fiona, sounds like I will be just behind you on the treatment cycle…slightly ahead of you in years at 44…not holding out much hope on the cold cap, as my hair is alreay thin, but some girlfriends are already talking about having a funky hat and scarf party, and my fella is itching to get his clippers out and give me a grade 1 like his! The one positive to come out of all of this so far is how wonderful people have been, especially my fella, bless him.
Catch you all soon, take care,
CD
x

Hi Crazy Dancer,

I had the bog standard 2 cm invasive ductal tumour, but my local hairdresser, whom I see every month, had a 6 cm tumour at age 48. She had neo-adj chemo and only needed a lumpectomy and then radiotherapy.

I had 6 x FEC and used the cold cap. Brilliant!! my hair thinned a lot on top, but I didn’t need to wear my wig, except on a bad hair day.

I’m not an expert, but chemo was never discussed with me before I had my two surgeries (2nd one for total lymph node removal = axillary resection), but as I had spread to some 4/18 lymph nodes, that was when the chemo was first mentioned, quite a shock. I was ER+ , PR not done (don’t even ask me why!) and HER2 status definitely not done. I had never heard of it 4 yrs ago. I had to go privately last year to have this test - cost me some £125, but thankfully it came back negative, which my Onc said is the best prognosis. I believe that HER2 testing is done routinely now - my dx was 4 yrs ago.
I think you are making the right decision at this stage.
Take care,
Liz.

Ali

Thanks for the comment about ‘markers’ - it was a great tip which I had already picked up on on here and is something my centre will do. They will do another ultrasound after 3rd chemo and if its shrinking that much they will put markers in then. I am obviously hoping for lumpectomy but if the whole thing needs to come off just to get rid of this horrible disease then so be it - I will have to cope - plenty others do.

Off to my local CLAN house this morning to see what they have to offer - plenty r and r I think!!

Hugs to all
Fiona

Hi Liz,

Can you let me know some of the abbreviations that you used, I’ve seen them on the site, and guess when you tell me they will seem really obvious…like FEC, ER+, PR, I guess HER2 was something to do with Herceptin?, and dx?

Thanks!
CD
x

HI CD,

Sorry to hear about your diagnosis, we’re all here to give you support on this website. FEC is a chemotherapy regime = 5FU, Epiribicin and cyclophosphamide. ER+ = refers to oestrogen receptors on tumours (the yanks spell oestrogen like esterogen, so that’s where the E comes from), PR = progesterone markers on tumour cells. And yes Her2 is the marker on tumours that shows if Herceptin is suitable for them. However, don’t know if you are aware but not everyone’s tumours have the above markers on them, some don’t have them at all, these are the ‘triple negative’ tumours.

Ask away if you have any other questions,
Fuschia
xxxx

Hi CD

welcome to this site -you will find all the support and help you will need and will soon get used to all the technical jargon.

I had grade 3 (aggresive) with lymph nodes involved and I’m more than 3/4 way through my chemo (had 2 operations first) I have to have rads (radiotherpy) afterwards but there is certainly a light at the end of my tunnel. Chemo is very duable for me - far better than what I had imagined.

Good luck

Hi CD

I have found the leaflets from Breast Cancer Care really helpful in understanding all the terminology. You can either download them from this site or order hard copies.

Julie N