Hi evreybody,
I’ve been wondering this week, what do doctors and researchers actually mean when they use the phrase “caught early” with regard to initial diagnosis of breast cancer?
Does it mean, before it’s reached the lymph nodes?
Has anyone read up about this? I’m starting to fret that, because I had four lymph nodes involved, my bc has NOT been caught “early”.
Thanks.
Ann X
Hi Ann,
I was diagnosed on Oct 2006 with a Stage 3 Her2 positive tumour and the cancer was also in 1 of 22 lymph nodes. I was told my BC was early stage cancer by the oncologist. I think anything that is not classed as early has gone into secondaries away from the breast.
BTW, I had an aunt who was diagnosed back in about 1979 whose cancer was in most of her lymph nodes. She went on the trial for the first chemo drug developed and she lived cancer free until her death at the age of 82 2 years ago.
The phrase early breast acncer generally means stage 1 or Stage 2 breast cancer and includes breast cancer which has spread to some of the lymph nodes, where the lump is less than 5cm and the lymph nodes are not matted together. In Stage 3 breast cancer (which is now divided in most classifications into stages 3a, 3b and 3c) the tumour is bigger than 5cm and/or nodes are matted together and/or more than 9 nodes are involved. Some stage 3 breast cancer is called locally advanced breast cancer though the term is more often used in the US than in the UK. Interestingly also in the UK women don’t talk much about being stage 3 though if you check the US forums you’ll see separate forums for stage 3.
So Ann I think you would be classed as having early breast cancer though your statistical risk of rceurrence is higher than if you had no nodes involved.
best wishes
Jane
Thanks Jane and Cherub.
That information has helped me.
I’ve realised that since my dx I’ve been too shell shocked to read much about bc and get myself genned up. Too scared, I suppose! Now, nearly through with my chemo, I’m thinking about it more and wondering what my prognosis is. The doctors don’t volunteer that information, do they, because the bc is too unpredictable in many cases.
I can’t afford to buy myself a copy of Susan Love’s breast book at the moment, so I’m going to find out if they have it in our local library.
I’m sure that reading that will help me. It would be nice if the onc units had a couple of copies to lend to people wouldn’t it?
Hope you both find something to enjoy today. The hot weather does not mix well with side effects from chemo!
Love,
Ann XX
I think the Surgeons and Oncologists give you as much info as they think you need to know or can cope with. I used to take a list of questions into all my oncology appointments. I wanted as much info as they could give me from the start as I felt being knowledgeable would help me manage things better, both from a physical and psychological point of view. Having the right info kept me focused and moving towards getting on with things again. I met a lady last year who didn’t want to know anything as she was so scared. However, I told her I thought she would feel better if she knew more. Next time I saw her she had done that and felt much better for it.
Yes, that’s what I should have done. It’s a strange thing, because i have a scientific background and work in the NHS,you would think i would have been straight in there finding out everything i could, but the very opposite happened. Sort of went into a denial that it was happening to me. Only now, 5 months down the line am I starting to realise this is happening to me, and that I need to decide how I’m going to deal with the uncertainty it brings.
The doctors are probably right to hold back all the info unless asked for by the patient. Sometimes I forget to ask, !
though
There’s a lot to get your head round, isn’t there, with this. I may ask for an appointment with the Macmillan nurse to talk some things through. I’ve heard others on here say it it’s very helpful.
My family and I haven’t talked about it at all so far. We’re all just hoping for a good outcome. But it must be helpful to have discussed what we would do if things didn’t end up as good as we hoped.
Take care,
thanks for chatting,
Ann xx
Hi,
I have the Susan Love book and read it a lot, you can get it second hand on Amazon but have to make sure you get the latest version or will be out of date. Just a word of warning she doesn’t mince her words and talks very frankly about things so make sure you are ready for it. She tells it how it is and does not take out the nasty bits. So either read carefully rather than right through it or find a gentler one first that gives you information first before moving on to statistice, etc.
Lily x
Thanks, Lily.
I wondered if she went into the current statistics. I know they are improving all the time, but there’s still the facts to be faced.
I think I’m in a place now where I need to know rather than keep my head in the sand.
I’m already preparing myself for the fact that I may need the other breast removing. I’ve been told by my surgeon there’s a high risk my invasive lobular ca will occur in the other breast,too.
best wishes to you,
Ann xx
I also have lobular cancer and am worried about the other breast. I am currently undergoing chemo and am HER2, Grade 2 with 6 lymph nodes involved. So I guess a high risk. Should I be pushing to have the other breast and lymph nodes removed I wonder. This has never been discussed. Indeed when I was first given results I asked of chances of it coming in other breast and was told it wont! They hadnt even operated at that stage. So how did they know. Also how do you know if nodes are matted together. Do they tell you?
Hi Starfish
If you would like to talk this through with somone in confidence please give the BCC helpline a call. Here you are able talk about anything you feel unsure about to one of our trained members of staff who can offer you a listening ear as well as support and advice. The number to call is 0808 800 6000 the lines open Monday to Friday 9am -5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC Facilitator
My oncologist said something to me that made me feel very confident when we were talking about ‘prognosis’ .He said ’ it is pointless talking about 5 or 10 year prognosis because YOUR statistic is either 0% or 100%, and whichever it is we will look after you and give you the best treatment.’
Programmes that give you a percentage prognosis can really only give a trend given your circumstances - you don’t know what will happen to you. I decided I didn’t need a figure based on that. I’m just living my life in the normal ‘cup half full’ way and enjoying it, despite the fact that when I look in the mirror I see a bald, paunchy, one breasted woman and I don’t really know who she is. I just REALLY hope I get to see my littlest go to school and hopefully leave school.
I have read quite a lot, asked thousands of questions and investigated many websites, but it doesn’t change anything… except maybe I wouldn’t be battling so hard for herceptin if I hadn’t - I’m grade 3, 4/14 nodes affected, had Mx & recon and I’m half way through chemo. My tumour is HER2 borderline…
There is no right or wrong way to behave with this - there is always someone to listen.
Big Love Td x
Starfish,
Have you had an MRI scan of your other breast?
Some hospitals offer it, some don’t, it seems. I did have one, and I’m currently waiting for a biopsy report of a “suspicious area” they found on the MRI. As you know, lobular ca. doesn’t always show up on mammo or ultra sound scan. That’s the scary thing about it. I’m not waiting until I notice a lump again, want it caught sooner than that.
Ann X
Im a tad confused, one of these posts says Grade 3 is bigger than 5cms, lymps matted together, I was told I was grade 3, 1 lymph node involved and the tumor was 3cms?!? Very confused!! did mention other probable nodal spread but unsure what this means!
Hi Lisaf
Check out breastcancercare.org.uk/docs/pathology___feb_08_0.pdf as this explains about size, grade, type etc. Very helpful and useful.
Angela
I’ve just looked at the leaflet on reading your pathology report and it is one of the best I’ve seen so far.
I would have been glad of it when I was diagnosed
Mole
I couldnt agree more, an excellent explanation!
I wish I’d known about this leaflet two years ago!
Christiane x