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The nodes positive issue.....

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Re: The nodes positive issue.....

Hi Sandra4 can you recommend FB groups please? Xx
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Re: The nodes positive issue.....

Hi there
Thanks for the supportive message. You all sound like you have been through so much but have got to other side. Glad you're all doing so well. Its good to hear of people doing well and living normal lives again.
I do try to be positive but am just not consistent at it. I just feel trapped between the next op and prospect of chemo, nothing seems to be moving at the minute.
Thanks for being there
Take care xx
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Re: The nodes positive issue.....

Hi Patricia, if cancer has only spread to the lymph nodes it is not classed as metastatic cancer. The job of the lymph nodes is to stop the cancer from spreading to other organs. Xx
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Re: The nodes positive issue.....

Hi flowergirl, I'm coming in to add support as you are going through this.
I hope this will help a little, so - my sister and friend were both dx 2012, with nodes, multiple surgeries, chemo. One has just come back (absolutely glowing) from a holiday in Greece, and the other has just opened a B&B! No recurrence. They rock! Me, I was dx 2013 multifocal grade 2 IDC. Still here:)
I'm not the most positive of people, didn't think I'd still be here to send you this message.
Anyway, have heart, we're all here for you
x x
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Re: The nodes positive issue.....

Im finding the staying positive so difficult at the moment though, any form of rational thinking just doesnt stay around too long. I find I need to sleep as this makes it go away for a while. X
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Re: The nodes positive issue.....

Hi Flowergirl and Tolliebelle thank you so much for your posts and yes i agree that the more you learn about this desease it becomes clear that there is no rhyme nor reason to it so it is just a matter of being positive and having the treatment. xxx
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Re: The nodes positive issue.....

Hi
Im beginning to realise this; i was so hung up about nodes as years ago node involvement was never good news but since being diagnosed i have had my eyes opened to what this vile disease is capable of and no one case is the same. I too am TN and again this was looked at once as 'oh dear'. My breast care team didnt bat an eyelid, if it didnt concern them then I wasnt going to lose anymore sleep over something else that is out of my control.
Take care
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Re: The nodes positive issue.....

I have read your comments 're node involvement with interest. I am now on my 3rd breast cancer in  4 years and all have been node negative and I have had chemo for the first 2  as triple negative and had rads for 1st 2. Have had bilateral mastectomy and waiting to start chemo for 3rd time. My point being that being node negative or positive does not guarantee anything! 

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Re: The nodes positive issue.....

Hi Patricia, I'm not sure it is- my understanding of mastatic cancer is its spread to another area - but I could be wrong.
My notes found I had macro mastic in one lymph nodes but hadn't spread anywhere else.
Maybe give your breast nurse a quick call to check x
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Re: The nodes positive issue.....

Hello does anyone know that if you have spread to the lymph nodes is it classed as mastatic cancer?
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Re: The nodes positive issue.....

KBO thank you so much for posting i had 18 out of 18 nodes removed positive so i am so glad to read your post and to know your doing well. Tricia xxx
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Re: The nodes positive issue.....

Thanks KBO for posting.

 

Really pleased you are doing so well.

 

Take Care  Gilly x  

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Re: The nodes positive issue.....

Hi ladies....Oh my goodness, how fab to see that this thread is still going strong. hmmmm ...well,i am 3 years past diagnosis and im still here...:) xx   all 25 nodes of mine were affected with cancer..so don't let it worry you...all i will say is for us ladies who are node positive we have to thank our nodes for doing their job and stopping the cancer from going any further!.xx

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Re: The nodes positive issue.....

Hi Gilly
Thanks for such a positive caring response. Today has definitely been a bad one for me, ive gone through just about every emotion imaginable, denial, despair, i havent done full anger yet but I did throw something today in frustration, nothing major or breakable.
You have been through the mill and remained positive; I just seem to have lost my way a little, I started off very positive then as things have progressed Ive feel rather deflated by it all. And yes I have been searching frantically for good news stories and similar scenarios and I tend to find the opposite which gets to me.
My whole body seems to hurt and ache which just sends my mind off into overdrive.
I need to muster some energy and plod on. I will put updates on here.
Your sons wedding sounds amazing and congratulations on news of your first grandchild due in Nov, you will definitely have lots to celebrate and update on when baby arrives.
Take care and thank you
Tracy xx
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Re: The nodes positive issue.....

Dear Flowergirl

 

I have been following this thread and not liked everything i've read, some of it i think is anxiety provoking for you ladies still going through treatment.  Please don't be despondant, DCIS as we know has the potential to turn nasty but in reality nobody knows how long this would have taken.  Now it's going to be gone and won't even get the chance......

 

When i was first diagnosed everybody says we are all different so don't be comparing.  All the time i looked for similarities, looking for people who have survived with similar diagnosis to me....  I had 6.5cm IDC Stage3 nodes involved  I had Chemo first which didn't feel quite right sitting there for six months with the tumour which responded poorly to FecT100 (this didn't do much for the tumour but damaged my muscles eyes hearing and i am left with significant nerve damage).

 

I had a Therapeutic Mastopexy (removed about 1/3rd of my breast and reshaped from what was left)  I was left with 36D pert breast gorgeous.........  I returned a fortnight later to be told she didn't get clear margins.  Bloody livid  my gorgeous pert boob now in the bin............  However i have had 2.1/2 years now with No Evidence of Disease and a lot of time to think.  If the Consultant had got a clear margin the 5mm area of concern might have changed over time.  So maybe not so livid now....I went on to have Mastectomy, Radiotherapy and reconstruction since.

 

When i was first diagnosed my Son had just asked his girlfriend to Marry him and my first thought was my baby is going to be married and i won't be there.  We planned and went to a fabulous Monastery wedding 140 guests from all over the world,  they've got there own place which i've helped them to decorate and now my first Grandchild is due in November. 

 

I know you've got to go back for more treatment..........and i'm much further down the line so am able to be more philosophical.  Please try to let your team do everything possible for a good outcome.  As you say they didn't bat an eyelid and will just tweak your treatment plan. Try to be kind and look after yourself.  Keep posting as you go through treatment.

 

Take Care   Gilly x

 

 

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Re: The nodes positive issue.....

Thanks busyanne
Got results yesterday turns out nodes were least of my problem, need another op as DCIS was found just at edge of margin and im Triple Negative. Feeling very despondent today, although my cancer team didnt bat an eyelid about any of it.
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Re: The nodes positive issue.....

I feel guilty most of the time when people ask what my BC was, mine was grade 1 tubular and no I didn't have any infected nodes and it does have pretty good prognosis due to the type and not nessecarily the fact that no nodes were involved, I did feel a big sense of relief when this was all confirmed and that I would be having just rads and Tamoxifen but it's still cancer and I know it can still come back / spread etc and there are no guarantees and I certainly don't feel lucky in any way as I've still had cancer and that will no doubt haunt me forever, we all have a Battle to fight but you have to try and hang on to the positives where you can which is what I've been doing, I've lost my mum and a very dear friend to this vile disease so I've seen what it can do and feel no smugness at all about my diagnosis, I wish you all the very best in over coming whatever you are facing and that we all live long , healthy, happy lives xx Jo
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Chascat i totally agree with what you have said as i was dx with a cancer lump grade 3 with 18 out of 18 nodes positive for cancer which i thought was a death sentence. I have however found a number of ladies with high node involvement that have had no spread and many years. Yet i also read daily on here women with early stage 1 cancer and no node involvement reporting secondaries after theu complete treatment which is usually rads so i believe we are the lucky ones to have the full treatment package from the beginning as the very best chance of stopping a recurrence. Tricia
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Re: The nodes positive issue.....

Flowergirl, I had four nodes involved and was Her2 positive.  Like you I was worried sick about my node involvement however I know from speaking to others that having node involvement is only one road for infiltration of the cancer cell to other parts of the body.  Cancer can spread via our vascular system so regardless of node involvement or not as long as you have the treatment you will know that you have done all you can.  I now feel that way.  Everyone's cancer behaves differently so listen to your medical team, keep as fit as you can and keep on living and enjoy every minute. 

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Re: The nodes positive issue.....

Of course I understand people want to shout it from the rooftops, I would no doubt have felt the same. I remember one lady on here making a real song and dance about her nodes being clear and that she had virtually no chance of it coming back, I was so upset as felt I'd been given a death sentence and we're all so vulnerable when first diagnosed. But as we know it isn't just about the nodes and sadly she passed away from secondary BC a few months later. Also people saying they were lucky not to have chemo I do find irritating (and I know I'm probably going to be slated here) but I have never felt I was unlucky having chemo, always that I was one of the lucky ones as I had thrown everything at it. You shouldn't apologise for the diagnosis and treatment you've had, cancer is cancer, it is indiscriminate and none of know if we're going to survive it or not. Wishing you well with your continued treatment x

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Hmmm but if it was you, then you would also feel like shouting it from the trees. This is the reason why I feel like I must apologise all the time for not having to go through chemo and 'only' had WLE, SNB, radiotherapy and letrozole. It's still not an easy journey I can tell you. People wonder if you have had 'real' cancer or not and its really sad to have to feel this way. xxxx
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Re: The nodes positive issue.....

I remember this thread from when it was first posted and was so glad that somebody had said it. I had a only one lymph nodes involved but still felt irritated by the celebratory hoorah my nodes are clear type of post. I know that sounds mean and it's obviously good news but spare a thought for those who have got node involvement please x

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Re: The nodes positive issue.....

 
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Re: The nodes positive issue.....

Hi flowergirl12

 

Welcome to the BCC discussion forums, where I am sure you will get lots of good, honest support from the many informed users of this site.

 

While you are waiting for replies I have put for you below links to some of BCC's publications you might find helpful.

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

 

http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/diagnosis/questions...

 

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/surgery/surgery-...

 

I hope this helps

 

Take care,

Jo, Moderator

 

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Re: The nodes positive issue.....

Hello
I am relatively new to this, I was diagnosed Stage 2 Grade 3 IDC on 10th April (cant even believe im typing that) MRI showed tumour to be 2.8cm still classed as early stage! I do have node involvement but i dont know the extent as yet as I only had Lumpectomy and AND last Thurs 14th May. I am very confused and am very scared and have become totally fixated on Nodes. I try to stay positive but im struggling with my mind running away on things and my anxiety appears to have returned to join the party. I just dont know what to think about anything anymore.
T x
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Re: The nodes positive issue.....

Sandra

Yes it is so important for us high node involvement ladies to see messages from others that have had similar dx and are doing well. Otherwise you just cant find anyone and think the worst.

Bless you Sandra and i am so happy you are doing so well. xxx
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Re: The nodes positive issue.....

Tricia, l have sent you a reply to your message.
Please stay positive, very easy to say when you have just been diagnosed!  l very rarely come on BCC but your message came up in my email.
Perhaps l need to come on more often for you 'node' ladies.
I was diagnosed grade 2 16/18 nodes in 2010! l am more than happy to say l am still doing ok! my onc thinks it is best for me to stay on Femara for another 5 years, as recent studies have suggested it is the best option for us node ladies! told him more than happy to stay on them forever!
I now belong to a breast cancer group on face book, and we have lots of ladies with high nodes doing really well many years down the line.
We all know things can change, but we are also more aware of our bodies, the sooner you report any changes the better outcome for you. So much more treatment out there now.
Seemed back in 2010 my life was 'just' about breast cancer, happily to report it is more about grandchildren, enjoying my life and shopping.
Hope you ladies all stay as well as possible
Sandra xxx

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Re: The nodes positive issue.....

Sandra

Just to let you know your post has been a life saver to me as i have just been dx with 18 out of 18 nodes positive and this left me feeling very scared and frightened. I am now so happy to see you and other lovely ladies on her are doing fine with high node involvement. Thank you for your post. xxx
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Kbo, i feel the same as you. I had a chest xray and ct scan on monday and totally broke down. Got breast MRI im terrified of the results.if its more bad news. I know i have breast cancer but do i want to know if theyve picked up anything else from scams? Thst i cant answer yet. It absolutley terrifies me and in shaking crying and having a glass of wine as im typing this at 11am!! I just want to start treatement. I had my original onc apointmemt for wednesday but i received a letter on tbe day saying theyve reschedueled. I called bcn she daid tbey hadnt received scan results. So i now have to wait another week. Mental and physical tormemt now until then. Im finding it hard to hold it all together. Im wonderi g if my results are back now if i call the bcn will she tell me?
Just had phonecall to for SNB appointment.

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Re: The nodes positive issue.....

oh bollx.  I am so sorry to hear that.  I picked up on your thread as I am having surgery this week and they doing lymph node clearance.

 

Warm fuzzies

 

Mrs Mogg

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Re: The nodes positive issue.....

Hi everyone. Just saw this for some reason. I am still flower 20 but ended to add an a as i forgot my details. Anyway rubbish news give me. I was diagnosed with mets in April ..after having only half of one lymph node involved. So now battling secondary . I now know I want see my boy grow up but living every day as best I can . Hope you are all ok x
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Re: The nodes positive issue.....

This is why this site is so great. Thank you KB0 for starting this thread so long ago and I hope you're doing well. At my meeting last week my preliminary path report said I had 15/23 node involvement. I have, like you did, been frantically googling for positive stories. So I too, would like to thank all of the other ladies for adding their stories. Continued good health for all x x

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Re: The nodes positive issue.....

Thank you soooh much jeanie and flower20 for yourcomments..
Jeanie, 15 nodes..wow..that's a lot too and yes it is very scary..do you know.. i am so, so scared that i had my CT scan and i told them i didnt want to know the results because i am so scared of the stories that i read on google, that if you have over 10 lympth nodes it is more likely to spread. People have told me that if anything did show up on the CT scan then they'd have had to tell me by now, regardless whether i instucted them that i didnt want to know.I had a ct scan about a month ago and since then ive had my first chemo...id rather just bury my head in the sand tbh and let them get on with the treatment plan..
Flower20 what a inspiring story...and that lady had a lot more nodes involved..thank you so much for sharing that..:) x

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Hi KB

I read your post with interest. I was paranoid about lymph node involvement and obsessed about it when I was told I had cancer in January. I am only 37 and have a wee boy who turned 3 two weeks ago. As it transpired I had it in one.
But I am not on to tell you this. We have a big roundabout in the estate where I live. After my last cycle of chemo, my neighbour who is a copper fixed my bike and blew up all the tyes and made it road worthy. Anyway, I decided to get on my bike, head scarf and all and cycle round the roundabout with my boy. A lady has jsut moved into the house opposite me. When I was feeling ill with chemo I used to watch her come and go with golf clubs and everything, thinking, i hope i live to that age and that she didn't have a care in the world. Anyway, for some reason on this sunny day a few weeks ago, when going round the roundabout, i decided to go and speak to her and say hello. We got speaking and the chat turned to cancer given i had my scarf on. It turned out she had BC 5 years ago and had 27/30 nodes. She was so inspirational and really helped me when i was feeling rotten. I think people are put in your way when you need them most. Remember it is not all about nodes. x

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Re: The nodes positive issue.....

Hi KB
This is only my second post on this new website as I'm not finding it very friendly. I was drawn to your post because I wanted to let you know that your concerns were my concerns too and often still are. I remember when I was diagnosed I could not find anyone else with a 15 lymph node involvement. I had to latch on to the results of my CT scan and liver ultrasound for comfort - both being clear. I did get offered a peer from Breast Cancer Care but she had only 4 nodes involved (Stage 2) and I wanted someone with over 10 who was a stage 3. Take comfort in knowing you are not travelling this journey alone and the good news is, I was diagnosed in 2005 and I'm still here and doing well. I think I remember Sandra4 from the time she was diagnosed - glad to hear you are also doing well.
Suggestion: I have learnt to put my lymph node involvement into a compartment within my chest of drawers with my other issues. Every time the drawer starts to open too much I try to close it. Visualisation has been good to me - you may wish to try it. Don't worry if it takes time and for the first few times you think what a load of old rubbish. It's free and it may help to ease the worry of your lymph node involvement.
Wishing you well.

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thanks to cackles too...xx

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Hi Sandra..yes i might possibly do that...thanks..i do have a friend i chat to quite often who had similar to me and she does help a lot..she is 2 yrs out too..i am absolutely sick of people looking shocked when i tell them about how many nodes were involved..im shocked when i hear about women who have had negative nodes then go having mets....
Its the luck of the draw.. if you ask me..cancer does what ever it wants to do.
K xx

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Hi K,
I agree with Cackles, use the helpine! when l was diagnosed l got in touch with them and they put me in touch with a lady who had very similar diagnosis as me, plus all the lymph nodes! and was a similar age. She use to phone me as much as l wanted, just checking to see how l was and chatting through different worries.
Think she was diagnosed 19 years ago and now does voluntary work.
If you phone the helpline and say you want a one-two-one, they will put you in touch with someone with similar diagnosis as yourself! and yes with lymph nodes too!!
xxx

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Evening KB. I so hope all goes well with your chemo. It is a daunting thing to face at the beginning but somehow the time rushes by and you get to the other end, battered and exhausted, but through it. I had FEC and Tax just like you. I joined the Starting Chemo in August group on the forums....it was the best thing I could have done. To be in contact with others who were having the same drugs took away my fear. It was so reassuring to know the taste and carbohydrate yearnings from day two were normal! What day the "Tax Truck "would hit the body ( about day four) and when normality (if you could call it that) would return. Ten of us met in April at a hotel and were able to put faces to names. It was a lively occasion and the chatter rattled on into the night. Ten Ladies looking like Judy Denche!!!! The hair loss I hated but I had super wigs and got used to them.
As for lymph node positive .....I had a 5cm Grade three tumour with 6:24 nodes positive and vascular involvement. It took time to get used to, but then I remembered all the patients I had known in my time as a nurse who are still alive and kicking ten , fifteen, Eighteen, twenty years, down the line. You will not get many replies from the survivors because they are back to normal and no longer need the Forums.
If I had a blip I would phone the Helpline. ....they were superb, and brought me back to normality. In fact two of the Helpliners had node positive Breast Cancer eighteen and over twenty years ago.
I went to hospital with a friend who has a 1 cm, grade one, node negative tubular tumour last week. Her oncologist was so much cup half empty I could have screamed. Some people have poor communication skills and don't realise it.
So hold on in there , use the Forums and Helpline when you need to, and a big virtual hug from me
Cackles xx

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do you mean a CT scan? onestep? xx

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oophorectomy = surgical removal of ovaries. Had keyhole op and revovered v quickly. Yes sorry forgot to add had full node clearance at time of mastectomy - chemo did its job but better out than in just in case a few stray nastyies were lurking. Again, straightforward recovery and no problems. Sometimes I just have the onc or surgeopn give me a physical examination, other times I have a scan and mammogram. We have health insurance which covers the scans, not sure they'd be routine otherwise.

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Thank you for you comment, Onestep,
So very glad you are doing OK.it must be a pain having to get checked out every 3 months but at least they are keeping a close eye on you. What sort of checks ups do you have to have?..
Please could you tell me what a oophorectomy is? and did you have a ANC? or did the chemo shrink the cancer cells in your nodes?
K xx

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Hello KB, I was dx in June 2009 aged 44 - 5.9cm lobular bc. 16/18 nodes affected. I had neoadjuvant chemo; 4 x Fec, at 3 week intervals, then 12 x weekly Taxol. Tough at times but I got through and didn't get any terrible side effects. Bald as an egg of course but again, you cope somehow ! Mastectomy + expander implant Jan 2010 which was replaced by silicone 6 months later. Also 15 x rads in Feb/March 2010, and started on 5 yrs tamoxifen at same time. I was 8/8 oestrogen and PR ++. Decided because of my strongly hormonal bc to have oophorectomy in Jan 2011.
I've just had my 3 year check up and all is well (so far). I'm active and managing not to let the cancer dominate my life.
I won't say it's not utterly terrifying at times; of course it is, and I had many dark times earlier on. But I won't let my life be filled with fear, and I'm looking forward to seeing my 4 schoolage children growing up, and staying with my lovely husband for many years to come.
Every time I leave one of my check ups (I'm on a 3 monthly circuit of appointments !) my odds increase. Of course I don't know what they'll find in September, and December, and next spring...but for now I'm NED and long may it continue.
Wishing you hope and strength.

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Morning..please keep posting I would love to hear from anyone who have had extensive node involvement It really does make me feel better knowing i'm not on my own and people doing so well despite what people keep saying about it been bad having nodes involoved.....xx

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Wow ladies, thanks Pina and susieq...it is very scary isnt it? my onc just didnt give me any positive feedback what so ever...im glad that there are ladies who have had extensive node involvement and it isnt just me...please keep posting...xxxxxxxxxx

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Sorry K meant to say good luck with your treatment - hate this new site which is why I don't post on here very often !!!

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Hi KB - I am another who was dx back in December 2008, with all my nodes involved (17/17). I too had the 'works' re treatment and here I am still NED - it'll be 4 years at Xmas 🙂

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Hi K,
I was diagnosed with 27/28 nodes in March 2010 and was devastated- remember my oncologist saying that they were going to throw everything they could at it. I had FEC-T, radiotherapy and am now on Tamoxifen and have just had a clear mammogram and ultrasound so am feeling good at the moment.
This year I have been getting my life back together and everything is much more positive than it was.
Good luck with the treatment, it's tough at the time but you'll get through it.
Take care,
xxx

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Hi ladies,
im still having a bad time over this nodes issue. People seem so shocked when i tell them i had so many nodes involved. I am beginning to feel that it really is very uncommon to have a lot of nodes involved.. My surgoen didnt seem that concerned because he said he was happy theyd got all the cancer out and that it was good news but hows it good news if its spread to the nodes?? he did also say it was good news that my bloods were all normal..that was the second piece of hgood news.Guess what he was saying was that nothing in my blood, showing any abnormalities ie like tumor markers..i am just so worried about it all, yes there are ladies out there who had extensive node involvement and are still going strong and i id love to hear from more of them
.one minute im ok then the next i start worrying about it all again...sorry if im going on and on about nodes thing but it keeps entering my head....

K xxx

K xxx