The nodes positive issue.....

[Guest user]

Thank you, very much, Sanda 4.... It's really fantastic to hear from you nodes positive ladies. I thought it was rare to have so many involved tbh. Clearly it isnt as so many of you ladies are coming forward, so thank you ever so much. Stories like this make me feel lifted and im sure anyone who's just been diagnosed with bc and have been told the same, will feel the same and so much better when they read this thread...

K xxx

[sandra4]

Hi K
Another one with lots of nodes involved 16/18 diagnosed in February 2010, such a worrying time for you, can remember it only too well!!
A lady l know on here was diagnosed with 27 nodes and she was diagnosed about the same time as me and is fine, as l am!
My friend was diagnosed with grade 3 and 26 nodes she also is fine and she was diagnosed over 11 years ago!

So chin up! the worrying doesn't go away, but does get easier!
xxx

[Guest user]

Lazycat,Wow.. your diagnosis sounds identical to mine only i cant have Tamoxifen because i am ER - so that dsnt respond to hormonal therapy but i can have Herceptin because I'm her2 +. It just proves that even if us ladies are node positive it isnt a death sentence.You are living proof...
I was also told it was more advanced because the cancer was in the lympths.They told me they are throwing in the kitchen sink. I guess by that term they are just giving me the whole works. But when i got told the reults I started to think i had terminal cancer because they told me it wasnt a prefect result. In fact i started to think alsorts.At least im now having treatment so im getting somewhere with it.
I am still wondering if the breast cancer has spread to nodes is it classed as secondary cancer?..does anyone know?

K xx

[Guest user]

My bc nurse and ultrasound lady mentioned that the calcification is precancerous cells not get fully changed and this part is not actually invasive as its not changed yet and that its only the tumours that are invasive! Has anyone else been told this?

[lazycat]

Hi KB
Another one here with heavy lymphnodes envolvement. Was diagosed almost 2 years ago, grade 3 cancer, 3.5 cm plus a vast area of DCIS of 5 cm .. I was shocked and petrified (and annoyed by everyone saying on this site "thank God its not in the nodes" aaarrghh) when they told me it was quite advanced, but still I went with the flow and had lots of chemo (4 EC+ 4 Tax), rads and am now on Tamoxifen. If it's of any consolation to yourself my Oncologist was a bit gloomy too when she read my path report, but the surgeon was very otimistic and up lifting.
Anyway, 2 years have passed by, returned to work full time while on Rads, still NED, and I'm now waiting for recon which should happen in 3 weeks time and sod the cancer I've even just bought a new car!
You're are the very beginnng of your journey, just wanted to wish you all the best!!!!
Deborah xx

[Guest user]

Hi my hair was long too and honestly I thought I would struggle, but it really is more stressful feeling your lovely locks become crunchy straw texture and wondering if or when it drops and whether you will be left patchy. But it is each to their own and how you feel. Not sure where you live, but l also bought some fab headwear, really funky ones from a local hairdresser who stocks a range called 'Christine headwear' worth looking on their site to see who stocks them.

I'm having 6 lots of chem then boob off and all nodes out then 3 weeks rads 5 days a week. They only scanned one and biopsy one node at the time, but as my bc is invasive they have decided to get rid of all of them, which I'm ok with if it decreases my chances of recurrence. I put myself in their hands, they know what their doing.

[Guest user]

Btw kat, sorry you got a infection. xx

[Guest user]

Wow Katsteer, Well i had all my nodes taken out. Did you not have a ANC? they took some out then they took the lot out.

I have been doing OK on chemo at the moment. I am day 5 and so far i feel ok..no side affects at present. My appetite as increased because of the steroids. i need to stop eating or I'll end up like a ten ton bessie..lol.

I am also going to get my hair cut short. My hair is really long but i dont think ill be able to shave it off, i think that ill struggle to do that.

K xx

[Guest user]

Hi I'm node positive and half way through my chemo had an ultrasound and told my cancer in my node has gone, and tumours have reduced by half! Just keep thinking another half to go and the bloody tumours will hopefully be gone. Obviously you do worrying as to whether it has spread, but you do have a ct scan which sort on sets your mind and ease. I'm also on the Artemis trial so had a bone scan. Also bc nurse seems to think I've caught it early enough. Like somebody said on this tread your lymph nodes where just doing there job.

I've just had chemo number 4, just mark the dates on a calendar and cross off as you go. I'm dealing with mine in bits, chemo, surgery then rads. Just concentrate on one bit at a time.drink lots of water, get a digital thermometer, eat little and often, this helping stop feeling sick, and whatever you do listen to your body and always contact the helpline if you feel unwell or temp goes up. I ended up netrupenic on my first chem, count went down to 0.1 and had n infection, spent Easter in hospital receiving antibiotics nd now have injections to help my bloods to stay over 1.
This doesn't happen to everyone, but it can happen around day 8 to 10. It is important to contact helpline and don't feel like you are being paranoid that's what they are there for.

I also got a wig and nobody can tell the difference. I cut my hair short and then when it started to fall out I took the plunge and got my husband to shave it off...and actually it was a huge relief to not be continually worrying about when it would all go. I do look a bit like a baby bird now, but it is still growing a little. At the end of the day as long as they get the cancer cleared I can live with no hair for a short while.

Good luck with your journey, stay positive.

Kat x

[Guest user]

Thank you Dotty2,
It would be nice to hear from the positive nodes ladies, where are they hiding? lol..
And yes, treatment will be over before i know it. I'm one down 5 to go. 5th day after 1st chemo and i'm feeling pretty well at the moment.No doubt it might hit me like a ton of bricks, fairly shortly, but who knows, we all react to it differently.

K x

[Guest user]

Hi KB,
Just try to remember we are all differennt, and our experiences of BC are not the same except being binded by a common thread.
Stay strong. Your treatment will soon be over, and life will get backto a new 'normal'. There are many women still going strong with node involvement - they may not post very often.
Take Care
Dotty2x

[Guest user]

Hiay, well im not going to be chatting to anyone this time i will just get on with my chemo. I will concentrate on me and not listen to too many stories...x

[Guest user]

Hi KB - you will meet every range of cancer in the chemo and radio suites - when I was having my treatment i had to get transferred to main county hospital and always neighbours with a terminal lady - due to both our treatment plans - we spent a good 6 hours in beds and used to have great chats as wanted no relatives and found we could talk freely - she was a good 40 yrs + on me but we had a good common ground and talk was always really interesting - I would suggest not reading too much into internet data - at the end of the day it is data on general population and stats - it doesn't know your body and neither do Onc's.
Debs x

[Guest user]

Aww... once again ladies,thank you so much for all your responses, all your posts make me feel so much better.It's nice to know that i'm not alone with the nodes issue. And i had 25nodes involved too which makes me feel very scared and frightened.
My onc didn't make me feel positive at all. i felt as though he had written me off.I dont know if im making any sense here. i was much happier with my surgeon as he gave me positive feedback.
I have had a horrible day so far. I can't stop reading stuff on the internet about breast cancer .I am having crazy, negative thoughts and worrying about anything related to the disease..I have been like this since the day i had my first chemo session. whilst sitting in the waiting area this lady started chatting to me. She started telling me that she had BC way back in 2000 and now had a recurrance and was told it was terminal.. the really did scare me and now all i can think about is terminal cancer. I couldnt understand how come she was told this as she was really well.It really is a scary disease but i have got to overcome these fears and try and get on in my life.
I really also should be really thankfull that i have had my first chemo session and feeling really well so far.

The point is that i have never ever being a ill person, ive always being healthy. Never been one for going to dr's or hospitals really because ive never needed to, but when you get something like this you are never away from the damn place.

Anyway i need to get my positive head back on and stop being silly..i know i will get through this..xxx

[moorcow]

HI everyone - just jumping on briefly as my node + part of my diagnosis, 2 years,3 months ago was the scariest part ...just to say please please don't google - there is a load of old nonsense on the net and there are scientific papers that are written for doctors and not written in a kind nor balancing possibilities kind of tone cos no one wrote them thinking patients would read them ....
I live with an onc and the best advice I got was down the pub with all the other oncs -
there are general pathways that generally a majority of women follow with each type of diagnosis, BUT there are so so so so many different versions of pathway through this that nothing matters but how you are today and tomorrow and the day after...
I found that really helpful,
cheers
N

[Guest user]

Hi Ladies
Quick post - I was diagnosed 2005 - 15./20 nodes+, 8cm tumour, ER+,PR+,HER2+.
I am still here despite terrible path report and 6.5 yrs NED, know the feelings very well of seeing the hooray node clear posts. I felt doomed and a no hoper from the start from 1st meeting with ONC. Had special funding for Tax and Herceptin as still prior to NICE approval (still the days when woman were taking health auth to court) + 5 years tam and now about to embark on 5 years letrozole as confirmed post men at age 44.
It is a hard pill to swallow and beleive me I spent many a night crying and planning on what if's, I know and read the posts on node- v node+ and would still rather be node-, but I am here and there are others we just dont return to the site too much.
Good luck
Debs

[Guest user]

Hope your chemo went as well as it could. I know I was scared stiff sitting in the chair waiting, but it wasn't as bad as I was expecting. No walk in the park, but I got through it. You will too. Just go with the flow, and before you know it, it'll be over.
Just listen to your body and drink plenty.

[Guest user]

Thanks Maltomlin,Glad you are doing fine.

Like you, i googled about positive nodes and it also scared me too.
I'm having my first chemo today, at 12.30..I am really dreading it but it's got to be done.

K x

[Guest user]

Here I am over 4 years out from DX and all is well. I was scared stiff when I was dx with 4 positive nodes. I googled too much and scared myself silly. But all is well and I'm fine.
You'll be fine too. It's a scary time when you're first dx. Your head is all over the place. But there are plenty of people out there who are out the other side like me, and getting on with their lives.

[Guest user]

Thank you once again ladies for all your responses, it's really helping. I was a bit dubious about this site at first as i was worried i might get depressed when i was hearing other peoples stories.It's not so bad now,there are so many people in the same boat..
Kittyqueen, funnily enough i went to see a lady about wigs today and tried various ones on .She brough out various different styles. my mate took photos of each wig i tried on. i actually quite enjoyed myself and we did have a laugh. i have chosen one that is very similar to my own hair and it looks b*****y fab.I must say i was very impressed. I was a bit worried about the losing of hair issue but now ive seen the wigs i feel so much better. It really did give me confidence because i thought that the wigs would look false.. a bit like lego heads...lol but they look b****y fantastic. In fact they look better than my own hair..lol. I am also purchasing a wig stand, the conditioner that they recommend when you wash it out and some lovely hats that you can wear with lovely scarves and broaches etc. The wigs i was trying on were worth £200 ffs....lol but im getting mine free coz they are NHS ones. I am also going to have my hair cut very short just so that it wont be so traumatic when it actually does start falling out. i will wear my wig when ive had my hair cut short so that nobody realises ive had any cut off.It will be like a security blanket. I dont mind if my undercarriage,bum hair...ha ha..sorry... and armpit hair drops out though..ha ha...well it saves on the waxing etc...

Sashca, yes i totally agree, they make out that node involvement is the end of the world. I am not really happy with my onc tbh,i like my surgeon though. i wonder if i could change oncs?

Dotty when they told me i had extensive nodes involved i was absolutely terrified too. I never knew that BC was so damn complicated. It's a b****** tbh..lol..sorry to swear.

And i know im changing subject here but everywhere i go i keep seeing stuff about cancer, i dont know if its because i have got it and im noticing it more.just a rant...lol...

K x

[Guest user]

Just jumping in her. I was dx in May 10 with lots of node involvement. Terrified me, had 6 doses of TAC chemo, but here I am feeling really well, and have been back at work full time for 16 months now.
There are so many factors surrounding BC, node involvement is only one of them, so take heart, and remember we are all so different, what affects one person may not affect another.
Very best wishes to all you starting out on this journey
Dotty2 x

[Sascha]

I so know what you mean - i am fed up with being told ah but you have so many lymph nodes affected....like its really bad news. what about the fact that they were doing the job they are supposed to do, as half were affected and half weren´t...????
I´m also really fed up with doctors who give you the serious you are in a bad way look when it does not necessarily mean that at all!!!! Sometimes I even wonder if ther doctors are a bit scared of cancer as well..........

[Kittyqueen]

Hi KB,
My diagnosis was very similar to yours too. Small tumour 9mm but grade 3 no node involvement Her2+ but Onc said same as yours re chemo, so I too am having EC-T, Herceptin and rads . However, I really just popped in to say so far Chemo hasn't been too bad at all for me (touches wood) and I go for EC number 4 next Tuesday so will be halfway through. Yes, I've lost my hair but still retaining eyelashes and brows at the min. I actually love my wig as had it trimmed to my own hairshape and I do wear it when I go out but wear sleep caps during the day for work.. Just a little hand squeeze and to wish you all the very best.
Love
KQ

[Guest user]

Thanks again ladies, i guess because i am new to all this, i am thunking alsorts ,but the onc wasn't very positive. Because it was in my nodes and the fact it was a grade 3,and the tumor was 5cm and had probably been there a while, he was more or less telling me that the cancer was more advanced so it hasnt really being caught as early as they'd like. In fact i was wondering that if the cancer has spread to nodes is that classed as secondary cancer? And im still confused by the fact that it was good news because my bloods are clear. They say one thing then say another. When i asked about the bloods the BCN said that there were no abnornalities showing in my liver, bones and kidneys etc. I think this is always the scariest thing of worrying if it's spread or not..
Anyway i'm having adjuvant chemotherapy (precautionary) why they've put precautionary in brackets confused me.They have basically told me they are throwing in the kitchen sink, so I'm having FEC-T and Herceptin and rads. My first chemo session is on the 28th of May.Today I am going to have a look at wigs.I can't wait..not..lol. I must admit i'm getting scared about having my first chemo..However I do feel that as much as there are so many side affects with chemo i also know its going to blast any other cells that might be hovering around in my body.

[pesteringpixie]

Hi KB
I do know what you mean about 'doom and gloom'.. when i got the full pathology I initially felt lifted as I had clear margins and clear nodes.. my onc soon brought me back to reality by saying that lymph is only one way of cells moving around, they can also move around in the blood all clear nodes mean is that the cancer hasn't chosen that pathway at the time of surgery.
BC is such a fickle disease. Two ladies can have exactly the same diagnosis yet one gets recurrences and the other never does.
I am now in the chemo part of my treatment and do you know, i never really think about my prognosis any more, just do each day as best i can. Life is good and rich. Never thought I would say that back in january when I was diagnosed.

Pixie xxx

[pargayan]

KB - we all started out as you did when we were first diagnosed, knowing nothing about BC so don't apologise.
If you look at other threads on this site, you may come across several ladies who have had to have several operations as they did not get clear margins, so in this respect you are one of the lucky ones in that they got it all on the 1st go.
Unfortunately BC is a disease that has not yet been fully mapped by the scientists so even the experts are still learning which is a bit of a worry, but the majority do the best they can using the latest information available to them when determining what our treatments should be. On this site there is usually at least one person who will be able to answer any question tht a 'newbie' may have.

For info - I was node neagtive on my 1st diagnosis 2 3/4 yrs ago but am currently undergoing treatment for a recurrence, so as other ladies have said, the issue of node involvement is not cut and dried.
Good luck with your treatment and hope all goes ok for you.

[Guest user]

Also what i got confused about is that my surgeon said it was good news that they'd got all the cancer out, so does this have something to do with clear margins? Hows it good news if its spread to nodes? I dont see how there are any positive vibes in all of ths. Also i was told that my blood results were clear, yet i had extensive node involvement.Saying that i know they can tell by tumor markers or something...Sorry if i am coming across as really thick here but everyone comes across has so knowledgable on here...x

[Guest user]

Aww thank you so very much, ladies, for your replies. i am just so damn scared though. I am trying to get my head around it all, i was only dx a month ago. i never knew BC was so complicated. i thought they just cut the tumor out and that was it. It's all happened so quickly. i am also grade 3 and had a 5cm tumor,im having FEC-T, 3 rounds of fec then 3 rounds of tax and Herceptin for a year. What i find weird is i dont feel ill...

Scottishlass, you are an inspiration...it just prooves it'snit a death sentence....xx

[BrainyBlonde]

Hi, I had no node involvement but wasn't in any way triumphant and the doctor seemed puzzled at my indifference when given the results. The reason is that my dear sister, who was diagnosed with breast cancer at the age of 40 four years previously had phoned me crying with joy that her nodes were clear despite a very large Grade 3 tumour diagnosis. Her cancer returned and spread about 18 months later and she died last July just 3 weeks after my diagnosis with the same Grade 3 aggressive, large tumours. So I know only too well that there's no guarantee of a good outcome either with node involvement or without. We just all have to hope for the best. Jan.

[Guest user]

I wanted to reply to this post but stupid forum wont let me ....why?

[dancing_girl]

Hi KB,
Everything is a worry whatever your diagnosis. Remember that the oncs base their treatment plan for you and your prognosis on many things. Node involvement is just one of many factors. Grade of tumour, vascular invasion, response to hormones and HER2 etc are all taken into consideration. And, as has already been said, many people with node involvement continue their lives with no further problems, while some without have further recurrences etc. We none of us know what the future will be, so try to make the best of each day and not worry too much - not easy, but it helps.
Best wishes. Stella

[JCJ]

That's what this site is for. To rant during those moments! 🙂

And sorry, I am one of the guilty. Naturally I was relieved that I had no node involvement, but I'm sure there will be reasons for you to be relieved, when things are not as bad as they could have been?

I have suffered terribly with guilt that I've got away relatively lightly with 'just' WLE, SNB and no node invlovement. Then I realised many other ladies felt the same. (We visit the guilty bench in BENCHLAND when we need to!)

Some people with node involvement make a complete return to health with no recurrence and some with clear nodes have a recurrence and/or secondaries, so there's no need to be despondent about your results. Just take each step at a time, get through all the treatments and remember that many many more people are getting through this disease and putting it behind them!

On here, we all share in each others small celebrations and offer support when it's not such good news.

Good Luck! x

[scottishlass]

You are allowed to have moments and moan KB. Al I want to say is that I did have node involvement and that was 23 years ago and I am still alive and kicking. Hope you are feeling a bit better and have time to enjoy the weekend. Val

[scottishlass]

You are allowed to have moments and moan KB. Al I want to say is that I did have node involvement and that was 23 years ago and I am still alive and kicking. Hope you are feeling a bit better and have time to enjoy the weekend. Val

[Guest user]

sorry about this post but i was having one of those moments..

[Guest user]

sorry about this post but i was having one of those moments..

[Guest user]

I just wish some people would stop saying how happy they are just because they haven't had node involvement..what about us ladies who have? what inspiration is that giving us? just a rant..sorry...i feel that because i have had node involvement that i am doomed and anyone else who is new to this breast cancer stuff will feel the same as me.. i'll probably get in trouble for saying all this...lol..just had to get it off my chest..so to speak...;)