10/18 node involvement - Help!

[hezb]

Linda and Pat hope your coping ok just keep strong they say if it makes you feel rubbish then its working!! take care Helenxx

[Guest user]

Hi Cass,

I have my penultimate tax on tuesday. Tax is a bit of a mixed bag for me. FEC didnt bother me that much, it all seemed over quickly but tax is ok until steroids run out and the marrow boosting juice starts around day three. I am then in for five days of feeling like rubbish. The worst thing is total lack of energy with tax which i still have. I went to gym this morning and then came home and went to bed for 2 hours. It could be the cumulative effect of chemo rather than tax itself although i hope not.

I saw the oncologist on Thursday but she couldnt tell me when rads start or even how long, She said they will contact me so i will just have to wait and see.

I too am trying to stay optimistic and not dwell too much on anything. I have a life to get back!!

All the best and good luck
Linda

[cass141]

Linda and Helen, thanks for your comments. Linda, how's the TAX going - I didn't feel too bad on it, compared to fEC anyway. Rads are going well, how many do you have to have? I must admit all these posts are making me feel more positive, even optimistic. I guess we can only take a day at a time and hope for the best. Yes Helen, I too think of the nodes that weren't affected, I'm so glad things are good with you. Best of luck to you both, and thanks again to the other ladies for posting such hopeful comments. Pat x

[hezb]

Hi Cass, i do understand your worry i had 10 out of 11 infected and i always think about the 1 that wasn't and that gives me hope, I am 2 1/2 years down the line and no problems so far so good.
Best wishes Helenxx

[Guest user]

Hi Cass and all

Just noticed this thread. I too am a node positive gel having 19/24 infected. This was a complete shock as Breast surgeon was sure from ultrasounds etc and feel of them that none were infected.

This has been a constant niggle in back of my mind and it is reassuring to read some of the comments here. I know what the stats are and my personal philosophy is do all i can
to stay as fit and healthy as possible and take the nasty medicine. Other than that its all down to luck.

i am about a month behind you, should be starting radiotherapy in June and am on the dreaded taxotere!!!

All the best to all.

Linda

[cass141]

Thanks for all your comments, it's very encouraging and you're right Christine, the statistics aren't particularly helpful. Tracey, great that you're so well and positive, will try and follow your example! Jeannie, to view profiles you click on the users name - having said that, I've been trying for a couple of days and the details won't load. May be my computer's playing up. All the best, Pat x

[Guest user]

Please, can someone tell me how to check profiles. A couple of ladies have said "see profile" but I have been unable to locate them. Many thanks.

Jeannie

[Guest user]

I had 9/18 nodes AFTER FEC chemo in 2003 and the disease has not returned. See my profile for more.

Also, the statistics are pretty pointless because they only tell you what will happen to a group of people like you, not what will happen to you. You could end up on the right side of the stats.

[Guest user]

Hi Cass,
Was originally diagnosed Feb 06.
Invasive Ductal. Grade 3. 3cm Tumor. Full anc.ER+ PR-.
Her2+. 6 Lymph nodes Involved.
Pls read my profile went to see Onc May 09 NAD, back in Sept 09.
Yearly mammo and ultrasound Nxt Wk.
Back to living and looking forward!!!
Love
Traceyx

[cass141]

Hi Cherub, the list is so useful as I often found that I wasn't able to take everything in at appts - and that was BEFORE chemo so I couldn't even blame it on chemo brain! And the long waits in clinic are difficult but I found that, once in with onc, you'd think I was the only patient there so I think long waits are par for the course. Hope you are keeping well and thanks for posting, Pat x

[cherub]

cass141, just wanted to say I agree with taking a list along. I used to make list the evening before every oncology appointment I attended so I wouldn't forget anything. Luckily, as we run our business from home, my husband was also able to attend every clinic and chemo session with me. I found this a great help as my concentration and memory was so bad I would not have remembered anything 15 minutes after leaving; also he was able to ask about anything he thought I had forgotten to put on the list. I quite often used to turn up with a sheet of A4 in my hand and when I was discharged last August the oncologists said being prepared for the appointments was a great help for them and they also said they found I was a good communicator.

Personally, I also found being prepared kept me calm and got straight to the point - the clinic I was under often overruns by 2 hours or more when they have newbies to see, so there is a lot of pressure on the medics to get on with things.

[cass141]

Alice, welcome to the thread. I agree with what you say about the surgery being a walk in the park - my stats are very similar to yours except that I had WLE. clearance and tumour was grade 3. I too was shocked when I got my results but things moved quite quickly, after re-excision for clear margins, chemo was arranged, now on rads and will have tamoxifen. It is all very overwhelming and then I remembered the advice of a good friend, just deal with today, tomorrow will come soon enough. Easier said than done but I just focused on what was happening that day and found it a little easier to cope with. The chemo wasn't as bad as I thought it was going to be, honestly. And there are a multitude of meds to help with side effects, too. Radiotherapy is much easier so just looking forward to 20th May when I finish. Once you've got your head round things, and you know exactly whats gonna happen next, you'll feel a bit better. I think all the women on these forums are amazing, we get this nasty bl***y bc thrown at us and we just get on with it. It cetainly aint easy but there is a wealth of support and info here to use when you need to. Do check out the 'useful tips for chemo' thread and the others about chemo when you know what you're having. Thanks for posting here and do keep in touch. A tip, I found as the shock wears off, you find there are loads of questions you want answered at clinic I used to write a list, also if you can take someone with you as sometimes all the info can be hard to take in and the person with you can also take the info in. All the best for now, Pat x

[aliceblue]

I was going to start a new thread, but found this one, so am very grateful, and will keep reading to keep my spirits up too. I had mastectomy and clearance on 24 April and just got my results back today - 12/12 nodes have cancer, I have Grade 2, but is positive (oestrogen and HER2 - I think all a bit of a blur), multifocal (spelling?). Not sure why they only removed 12 as it was supposed to be a full clearance. Apparently there are nodes higher up that weren't removed, very confused now. Oncologist felt collarbone and neck and didn't seem alarmed. Have to have a scan next week to see if spread. Oncologist thinks that it hasn't but needs to be sure. One hurdle after another. Have chemo, herceptin, radiology and tamoxifen all planned. Funny that surgery now really feels like a walk in the park compared to all this. Didn't know there were stages and grades, so not sure what stage the cancer is, I suppose I can ask the oncologist when I go back to the clinic. Have a 3 year old, and was staying really positive, but feel a bit shocked today.

[cass141]

Thanks Ruby, so glad to hear your story, thanks so much for sharing it. Pat x

[Ruby1]

Hi Cass

I was diagnosed in June 2007 with a 4/5cm lump grade 3, widespread DCIS, several lymph nodes involved and HER2+++. The second anniversary of my diagnosis is in June. I'm still being closely monitored and at the moment all seems ok. It's hard and I have my moments (it's the not knowing that's hard) but I'm getting on with my life. The chemotherapy was extremely effective - I had 3 FEC and 3 taxotere and a year of Herceptin. The lump shrunk to 7mm. I remember wanting to hear good news stories from people who had node involvement and it really helped me and reading these posts, it still does.
Best wishes
Ruby xxxx

[yogibear]

Hi all and yes this is a great post.
I am amongst the ranks of node worriers. 5/29 grade 2 and the two ladies I was in hospital with were grade 3 but clear nodes. I was given stats at the start of my chemo but have chosen to ignore them as you only need a 1% to be that one person.
Its good to hear some positive stories. All the best Lynn x

[cass141]

Debs, what a great post, glad you are well, it is possible! And P, I hadn't thought of it like that, thanks. Best wishes to all, love Pat x

[Guest user]

Dear Pat
I, too, am a "node worrier". It's horrible. Please take heart - I think there are lots of people out there who are OK. At least your nodes were doing an efficient job of catching the cancer cells!!
Try not to worry
All the best
P

[Guest user]

I was diagnosed Dec 05, large lump 15/20 nodes, ER+ PR+ and her2+++ still here NED and Onc has just agreed to annual appts. I never thought I would hear that from her.

Debbie

[cass141]

Cherub, what a lovely story! Thanks so much for sharing that. It's good to know there are positive stories out there. Hope you are keeping well. love Pat x

[cherub]

My aunt had BC in the very early 70s, she had a mastectomy and most of her lymph nodes were affected. After radiotherapy she took part in one of the first chemo trials in the country for the drug 5FU which was all they had at the time. Both her mother and sister died from BC.

She lived until she was 82,dying in 2006,2 months before I was diagnosed. Her cancer never returned and she lived a very happy life. I never once heard her complain about things, she was very much one of those wartime generation of ladies who felt they just had to get on with things. I often look at her photo and think of her as she was such a cheerful lady even in times of deep adversity.

[judyw47]

Just want to say what a lovely positive thread this is. I'm a constant node worrier. Its so good to hear positive stories.

Love to all Judy x

[cass141]

Jeannie and Chalee, thanks for your posts. Chalee, the total size of my tumour (I had breast carcinoma and a DCIS) was 2.6cm and like yours, was multifocal. Your story and those like it give me a lift, I wish you many years of NED. love Pat x

[chalee]

I had grade 2, 5cm multifocal with 12 pos nodes. A year of treatment. Last month I passed the sixth anniversary of diagnosis. I'm still disease free as far as I know. Long may it continue, the uncertainty can be difficult! Very best wishes. x

[Guest user]

Hi cass141

Just thought I would let you know I had 15 nodes with cancer. I've not had it easy but I've now got 4 years behind me. I try to be positive about the future.

Wishing you well.

Jeannie

[cass141]

Hi ladies, thanks so much for your comments, I guess I'm just going to have to get used to the uncertainty while getting on with my life. Nicky, thanks for sharing that, it gives me hope and I wish you good health, and Jane and Ostrich, for many years to come. I've found these forums so supportive and extremely useful at a horrible time. All the best, Pat x

[Guest user]

Hi Pat

My BC sounded very similar to yours. I had 10 lymph nodes infected and a grade 3 - 3cm lump. I actually had my chemo before the WLE and it completely obliterated the tumour to the point that it was indetectable, so the consultant had to remove just the surrounding area around where she had marked. I then had 33 radiotherapy. I asked the Onc about the liklihood that it had spread and she said that if the chemo had obliterated such a large lump she was confident that it would also have killed any 'stray' cancer cells drifting around my body! This comment has given my lots of reassurance. My DX was December 2009. Hope this helps I am only 2+ years on and I am very aware that BC is a very unpredictable disease and I don't want to tempt fate by saying I have NED, but at the moment I am attempting to not worry about a reoccurance and get on with life. I hope that my experience can offer some reassurance!

Take care
Nicky

[Guest user]

Hi Pat:

Sympathies..I know that feeling of having more nodes involved than others.

Yes statisticaly the more nodes involved the more likely is a recurrence. According to Susan Love (American doctor who has written renouned Breat Book) two thirds of people with node involvement get a recurrence and one third of those without.

I had 23/25 nodes cancerous after pre surgery chemo and mastectomy/node clearance. You may not think this good news..but I kindof do cause I went two and a half years with no evidence of disease after my treatment finished. I got an incurable regional recurrence (April 2007) and live best I can with that...its now five and a half years since my primary diagnosis...longer than I thought or was expected to get.

I know other women diagnosed at about the same time as me who have similar node involvement to yours...and they are still no evidence of disease...there are good news stories out there but you have to search.

Breast cancer is such a diverse disease and not a level playing field. I used to find it very hard when people talked about their tiny no node cancers and what I had was a nasty locally advanced big aggressive one.

Yes it is about uncertainty...and I think that each person does somehow manage to find their own way of living with that...but not easy.

best wishes

Jane

[Guest user]

Hi Cass,

I'm not in your position I'm afraid as mine was grade 1, 1.8 cm and 1 out of 9 nodes involved.

My understanding is that the higher the lymph node involvement the worse in terms of statistics but my experience (as yours) is that statistics are just numbers and node negative women I've known have gone on to develop secondaries.

I constantly worry even with my "good" prognosis and have been through the NPI and Adjuvent Online to check out my statistical "chances". They are good but it doesn't stop me worry daily.

Hoping we all stay well, xxx

[cass141]

Hi, I was dx in Oct 08, Grade 3 2.6cm tumour plus 10/18 nodes involved. Had WLE and ANC, chemo and now having Rads. Most ladies I speak to on here had very little or no node involvement. Is there anyone out there that had a similar dx as me - I guess I'm looking for some reassurance that it isn't going to be all gloom and doom from now on. My onc has never talked statistics or percentages and, to be fair I've never asked. However, as time has gone on, I do wonder, it seems obvious that the higher the node involvement the higher the chance of recurrence although on here I've come across many women who originally had no node involvement but went on to develop secondaries. It's a minefield and I realise that the only certain thing about BC is the uncertainty! Anyway, would appreciate any input. love Pat x