27 out of 28 lymph nodes infected :(

I had a quadrantectomy, full node clearance and mammoplasty last week. Good news is that margins are clear so no more surgery at the moment, I was dreading being told that I needed a mastectomy but was hit with the lab results on my lymph nodes instead. 27 out of 28 lymph nodes infected :frowning: Just keeping getting news that is worse than I’m expecting. Must admit I’m reeling. I’m on for FEC & Taxotere, tamoxifen, radiotherapy and waiting for herceptin status.
Finding it really difficult to be positive.
Gill :frowning:

Gill - so sorry that there was a large number of lymph nodes involved… from what I remember from your first thread they have done other scans already that showed no further spread so please do try to hold onto that at the moment… It is good news that you are going to be able to have tamoxifen and perhaps herceptin… There are a lot of ladies on here who have also had similar number of nodes involved who are still doing fine… Sending you loads of love as you must be so upset and worried today.

Take care

Theresa x

Hi Gill

Sorry you have not had all the news you hoped for but as Theresa says hold onto the fact that scans showed no further spread and you have clear margins - great news. There are so many inspiring postings on this forum from many from women with similar results to yourself, I’m sure they will be alone shortly to offer their support and experiences. There is a new threat just started - something about ‘sharing our journey’ which you might enjoy. I was reading it last night and it made me smile.

You will feel better when you get your treatmet plan underway but this is always the place to come and rant whenever you feel like it, we know how you feel. Wishing you all the best

Love and hugs Anne.

Hi Gill

The threat I was talking about is “Embarking on an adventure, you are welcome to tag along”. Hope you ok today.

Love Anne xx

Hi Gill

Just wanted to say Hi, and ‘I know how you feel’. I had 20/23 nodes involved, clear margins after MX, and clear bone and CT scans. I’ve made it through the chemo (also FEC-T, 8 sessions) and am half way through 15 rads now, and feeling reasonably OK throughout.

It got me down for a while, but if it comes back, it comes back. We just have to get on with living our lives and hoping that it doesn’t. Easier said than done, I know!

Hugs to you
Flora xxx

Gill

Sorry the news wasn’t better. I had the same experience where it seemed every time I went near them they told me something worse. But it sounds like that’s all the bad news delivered now & you know what you are facing. Remember my first response to you - it won’t be nice but you WILL get through. I’ve done the FEC/Taxotere combo, & the rads, doing the Herceptin now, only difference is I have Arimidex instead of Tamoxifen, no idea why, & don’t really care.
Just let yourself feel however you do for the next wee while, angry, sad, it’s all normal, & we will all be here for you.
xx

I think node involvement and spread is probably what we all fear when we go into all this.

My spread to nodes was big too - he only found 24 nodes though, but the one ‘highest up’ he did give it a name and I have forgotton was clear. (I took that as ‘good’ news)…

Even so I think any node involvement is treated the same and if you have over 3 involved you should get a Scan to see if there is spread elewhere straighaway (its a horrid thing to go through but at least you do get results and know - thankfully my scan was clear and I know numerous of others who have large node involvement who have had clear scans - I am sure they will post!)

So basically you should get the full treatement to blast any stray cells to obvlivian - not a good time but there are many many people who have been where we are and are still around living healthy happy lives… that is what I cling to during my ‘down’ times - which I must admit are getting less as I am going through the treatment and getting my life back into some sort of normality.

There is so much support on here - I post on some threads appropriate and I read most of them and they are so informative and inspiring from ladies who are/have gone through exactly what we are - and it helps a lot.
x

Hi Theresa,Anne,Flora,Divvy,Saffronseed
Yes, holding on to the fact that the scans were clear is very reassuring. Being told that the cancer is aggressive was a huge shock. The clinic just keeps hitting me with news that is far worse than I’m expecting. If the herceptin test is back I’ll be seeing the oncologist on Tues to sort chemotherapy dates etc. We haven’t yet told the children that there has been any change in prognosis and might not. It’s a difficult one. My children are 23,21 and 18 and currently are worried sick so I don’t think it’s necessary to paint a bleaker picture just yet. Hopefully all the treatment will stop it in it’s tracks.
Flora,Divvy sounds like you’ve had the same chemo as I’m on for. Reasonably OK sounds bearable! I think it’s the unknown which is so scary. There’s just this nagging question in my mind asking if the treatment is worth it. Will I get through it only to find that secondaries are going to sprout up everywhere and I’ve wasted my healthiest nine months trying to cure it. If I left things as they were would I have longer? I’m certainly feeling much worse now than I did before they started making me better.
Sorry I’m so gloomy at the moment. I try to get it all out of my system before my 18 year old son gets up. He’s really worried about me and I don’t want him to see just how worried I am about it all.
I had a great day yesterday going out with friends, think the answer is to stay busy and not dwell on things.
Wishing you all a good weekend. The sun is shining and that always makes things look better :slight_smile:
Gill xx

Hi gillrh

As well as the support you are receiving from the other users you may find it helps to talk things through with one of our trained members of staff on the BCC helpline. Here you are able to share your feelings and concerns with someone who can offer you a ‘listening ear’ as well as support and information if required.

The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.

I hope this helps.

Best wishes
Sam (BCC Facilitator)

Gill I know what you mean about the kids, I have 3 as well, a bit older than yours but not much, & didn’t tell them anything till I had all the results & the op was arranged. Even now I can’t or won’t tell them about my fears, which I guess are the same as yours i.e I have still discomfort where they operated, other side effects such as neuropathy which onc told me may never recover, & I hate the hair, although it’s growing I think I look like a man in drag - & what if I’ve done all this for nothing ? I’ve had & am still having all the treatment, but it’s made me ill, & sore & unhappy, but I wouldn’t mind so much if I knew for sure & certain it would work, but there’s no guarantees & why would I want to feel like this if it’s all for nothing.
Oh Gill I am sorry, I meant to cheer you up not bring you down.
Just ignore me

Hi Gill
Having had 16/18 infected, l know exactly where you are coming from! every thought seems a negative one! but you are bound to have days like that, we have a lot of nodes involved, and we know that is not good news. But reading some of the threads l also know there are people out there that have had just as many involved and still going strong, in fact l have kept some of the threads, just for me to read when l am feeling a bit low. I also have a friend who was diagnosed just over 10 years, she had 20/28 infecteced and she is back working and keeping well, just goes for a check up with the breast care nurse once a year. There is one lady on here that had 19 nodes infected and that was 12 years ago, and she is still well. I also spoke to the helpline, who put me in touch with someone with similar gland involvement to mine, in fact her nodes involvement were higher than mine, but she is well, and if l remember correctly it was 19years ago. She phones me from time to time to see how l am, but at any time l can say “l am coping now thank you, l dont need anymore support” And perhaps the next time she calls l can say that, because l have a lot of support from others, it was just that bit of security for me knowing there were others with high node involvement that were OK!!
I was shocked to see one lady on here that had all her nodes involved! l think it is over a year now, and she is still well.
I know it doesn’t take away how you feel, but l hope it puts a bit of light at the end of a tunnel for you
As for your children, only you can decide what they can cope with, but they might be concerned as to why you are more stressed at times, therefore they may worry and not say anything to you, whereas if it is all out in the open…
Take care, sending lots of hugs, and if you want me to pm any of those threads l was talking about l will do.
Sandra xxx

Hi Gill,
I see you have the oncologist tomorrow? hope all goes well, and you get some positive feedback from them
Positive vibes coming your way
Sandra xxx

Thanks Sandra,
We’ll be having a chat with the children once university exams are over. My son passed his driving test today so that was good news.
Will be starting chemo in 3-4 weeks, 3 FEC and 3 Tax, also tamoxifen and then 3 weeks of radiotherapy. Oncologist was brilliant, we spent over an hour with him and while I felt positive(ish) in his office it’s been difficult since just thinking it all through. At least I’ll have a couple of months to recover before my 50th birthday!!
haven’t posted recently though have been reading everyones posts. Am very uncomfortable from the op with fluid build up and am really not sleeping well. Tiredness does not make for cheerfulness.
Hope you are recovering well and keeping cheerful.
Gill XXX

Hi Divvy, Hope you are feeling more cheerful now. I’ve been feeling really low recently and it’s very hard to get emotions back in check. My brother has been ringing me and I’ve actively been ignoring his calls because I can’t face talking to him at the moment. Think it’s because I’ve always been the strong one but that’s not possible at the moment :frowning:
My oncologist was very positive about the benefits of treatment outweighing all the side effects and I’m going to try and hold on to that through the chemo :frowning: Total hairloss here I come, have got to decide if it’s worth trying to keep it during the FEC before I lose it with the TAX. What a decision to have to make.
Good luck with everthing, hopefully it will be another bright sunny day tomorrow and that always seems to make things better!!
Gill xx

Hi Gill,
Good you got a little bit of positive news from onc. l am seeing mine either next week or the following, we have to hang onto every bit of positive news. You probably read my post on Maria’s ‘embarking on a journey’
Have heard so many people with lots of node involvement, and while it is not good, we are lucky enough to be able to have the chemo.
At the moment l feel the best l have felt sinced diagnosed! twice been to the hospital, and had hope rather than ‘no’ hope.
Congratulations to your son for passing his driving test. that is what we need more good news.
My onc, is very much against the coldcap, even going back 10 years ago, when l used to go with a friend, he always said, he was concerned the chemo wasn’t getting everywhere with the coldcap, so my thoughts are l want it everywhere, l need my trust in him, so bring on the wig! truthfully l will be a wreck, l love my hair and will hate every minute of not having it.
That put a smile on my face, with regards to your brother, my brother is 2 years older than me, and l have always been the strong one! and l try and text him, rather than talk, because l feel as though l always have to reassure him, and like you find it very difficult sometimes.
You take care
Sandra xxx