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Information please about regional recurrence

28 REPLIES 28
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Re: Information please about regional recurrence

Yes liquid is good! Hi Kelley

Yes liquid is usually good beacuse it means a cyst but to be absolutely sure I think the liquid (aspirate in medical jargon) should be tested for cancerous cells.

Fingers crossed for both of us.

Jane

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Re: Information please about regional recurrence

Hi Jane,
I've only just caught up with this thread. So sorry to hear about the lump. Fingers crossed for good results. I'm having a bit of a scare to at the moment. I've found a lump just below my reconstructed breast. I'm going, on Wednesday for an ultrascan and I think a FNA. Is this what you had? So if liquid comes out it's ok?
Let's hope it's good news for both of us.
Thinking of you
Kelley

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Re: Information please about regional recurrence

good luck with results Jane

Just wanted to wish you good luck with your results next week, i'll be thinking about you

Jakki
xxxx

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Re: Information please about regional recurrence

I totally agree about lack of info on triple neg bc. I have posted in more detail in that forum on the other site. Sorry not enough energy to repeat post here.

This disease stinks. So does the way it is portrayed as an increasingly controllable pussy cat amongst cancers. I was node negative when diagnosed 2 years ago. Now, with no hint of regional recurrence,I have mets and only a few months to live.

All the very best for Monday.

Roisin

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Re: Information please about regional recurrence

Jane I am sorry to hear your news, although not very active on this site I always look for news of people from the past.
I was originally diagnosed in 2001, had 2 lymph nodes involved (nothing compared to yours), I had 2 clear years. In 2003 I noticed a lump under arm inbetween ribs, had this removed which was cancer again. I was told this was a piece of original tissue in the lymph glands that had been left behind,about the size of a gobstopper when removed. Have had more radiotherapy but refused more chemo because of last time. 2007 I am still very fit and well, but on arimidex.
Fingers crossed yours is the same senario, I work with doctors, and a few years ago when I was down, he said, as long as you feel well can live normally, what is your problem. It made me think very hard about myself, and he is right, it is a good policy.
Thinking of you and wishing for good news

Ann

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Re: Information please about regional recurrence

dear Jane After writing my post I thought how can I write such a load of rubbish? However realistic you and I are, I am so sick that you have this lump. Quite honestly sometimes I think it is a lot better to be in denial and to instead turn to platitudes. No wonder everyone tries to avoid facing up to things as it's not at all pleasant.

You are a fantastic support to everyone and I hate this bloody awful disease.

Mole

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Re: Information please about regional recurrence

Regional Recurrence Hi Jane,

I meant to add a little more when i first replied to your post,but was on my way out so it was a bit rushed..

When i had my core biopsy done in my clavicle nodes,as your know i was referred for a mri scan...this is when it was discovered i had the large area underneath my collarbone that was also cancerous,i had no lumps in this area,and if i hadnt had the scan it would never have been discovered,my onc told me it was probably a spread from this large area that had gone into my clavicle lymph nodes..i know this is not always the case where clavicle nodes are involved...maybe worth insisting on a mri scan though if it comes to it...

I have always read your posts,and you helped me with some sound advice when i first joined the Triple negative site ,as you can see by your replys we are all concerned and wish you well with your reults..

Julie

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Re: Information please about regional recurrence

Thank you so much everyone Your messages have touched me more than I can say...from you oldies like Mole and becks who've been knocking around these forums as long as me..and those who came along afterwards and joined in some great debates...not always agreeing...KathyF..and those who I've not 'spoken' to before like carla..I'm so glad that something I said touched something which helped for you..

and Julie and Jackki..particularly you Jakki because its been such an awful week for you but you've found time for me too..thank you for the factual information which even I as cancer info junkie have found so hard to find.

And its very nice of you too moderator to suggest that I might like to phone the helpline though I'm not sure you could give me the info I was looking for... and I do so wish you'd be a bit speedier about updating your factsheets on 'minority' subjects..like where is that triple negative factsheet I've been asking about on and off for three years now? And next I'm going to start asking about a regional recurrence factsheet. Just a thought. Perhaps a start would be to call this forum local/regional recurrence...

Thank you everyone. Of course I'll let you know what happens.

Jane

Member

Re: Information please about regional recurrence

Hi Jane Hi Jane

I don't come on the sites so often these days and so have only just seen your posting.

I am so very sorry to hear about this. Yes, we all know how miserable the waiting is.

I can't help with any experiences as I haven't had this problem but I just wanted to send you my good wishes and to say that I really will be thinking of you.

Please let us know when you get the results.

Love

bjj

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Re: Information please about regional recurrence

Hi Jane I can only echo the good wishes of others and feel frustrated at my impotence to offer any useful advice when your own posts are always well informed and factual.Keeping my fingers crossed that all turns out well.
Cherry

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Re: Information please about regional recurrence

Jane Thinking of you and really hoping this proves to be benign.

Good luck
Kim

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Re: Information please about regional recurrence

Hi Jane,

Just saw your post and although I can't offer you any advice I just want to wish you well. You replied to one of my first posts with a very useful article on life after treatment which I and many others found to be helpful. You always seem to offer such good advice to others in the posts I have read; I really hope that you get good news from your tests.

Take care, Carla x

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Re: Information please about regional recurrence

Hi Jane Hi Jane,

Just saw your post.

I'm thinking of you.

Best wishes,

Sue

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Re: Information please about regional recurrence

Dear Jane

I'm so sorry to hear your news. Since discovering this site I've always read your posts with great interest - you are always very well informed and your posts have helped me a lot.

I shall be thinking of you and wishing you the best of luck.

Best wishes
Anthi

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Re: Information please about regional recurrence

your news Dear Jane

I am sorry to hear your news. Although I didn't discover this site until after my own treatment 3 years ago, like others I always read your posts, as I have found them to be particularly sensible - thanks for demonstrating an approach which can be realistic without negativity.

Keep posting and I will look through some of my references, and if I find anything useful will let you know.

You will be in my thoughts for the next few weeks. Best of luck

regards

Sarah

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Re: Information please about regional recurrence

Jane you are very much in my thoughts at this difficult time.I do hope everything goes well for you..I know you've kept me going through some difficult times! Big hugs,
Josie xx

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Re: Information please about regional recurrence

bad news Dear Jane

You have always had a realistic view of the future but I am sorry to hear the test was painful and you are in limbo about the results.

Keep busy and let us know how you get on

and above all good luck

Mole

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Re: Information please about regional recurrence

Jane

Just wanted to say how sorry I am to hear your news. Waiting for results has got to be one of the hardest things and you are in my thoughts at this difficult time.

Best wishes

Jo

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Re: Information please about regional recurrence

Sorry to hear your news Sorry to read your post. I dont post very often but always read what you have to say as it is always level headed and I am impressed at how positive you are. Your posts have helped me more than any other and I hope your results are what you are hoping for.

Good luck

Julie

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Re: Information please about regional recurrence

For Jane Nothing to add to what the others have said. Just wanted to wish you all the best at this worrying time. Hopefully, it will be benign.

Kindest regards

Mcgle

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Re: Information please about regional recurrence

Jane

I just wanted to add that I'm thinking about you at this difficult time.

Love from Becks, Ian and girls xxxxx

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Re: Information please about regional recurrence

Everything crossed for you I've got nothing useful to say but I'm thinking of you. Oh Jane I do wish you well. x

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Re: Information please about regional recurrence

For JaneRA Hello Jane,

Sorry to hear you're going through such a difficult time right now, we know that waiting for test results is really tough. We are sure you know this, but please do ring the helpline if you want a chat with someone. The number to phone is freefone 0808 800 6000 the lines being open Monday to Friday 9am - 5pm, Saturdays 9am - 2pm.

If you are interested in the telephone peer support the helpline can also put you in touch with this service.

Very best wishes for the test results.

Kind regards
BCC Host

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Re: Information please about regional recurrence

For JaneRA Hi Jane

Sorry to hear you have this worry with the lump on your clavicle. I can share with you my experience, obviously i dont want to frighten you though and as you know we are all different.

I had an ultrasounded guided biopsy done on mine in August 2006.. i can remember that electric shock feeling.. it was very painful and i ended up in tears when they did mine. It was very tender, sore and bruised for a while afterwards. My biopsy confirmed it was cancerous but they also wanted to do more tests on the nodes so they did a small op to remove them. I had 3 that were found to have cancer in them. They re-tested my nodes for HER2 as i was HER2 negative upon my primary diagnosis. It had infact changed an I am now HER2 positive. Can you ask your team if they will be re-testing your hormone/HER2 status?

I also had a CT scan and bone scan and they came back clear.

I had more chemo and then rads and whilst having my chemo another 2 popped up.. rads has since shrunk them, infact my onc has told me i just have a thickening of the area now.

My nodes felt like kidney beans and although you couldnt see them, i could feel them when i pressed my finger down on them. They also ached.

Nodes can pop up with infections etc as you probably know.. I do hope thats all yours turns out to be..

Please keep us posted..thanks for replying to me on my recent post on the secondaries form.

Love Jakki
x

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Re: Information please about regional recurrence

Hi Jane So sorry to hear that you're having to go through the maelstrom of emotions attached to tests and waiting again. It's really is an awful strain and I remember how hard I found it when having all the tests linked to my own loco-regional occurrence (under the ANC scar).

I'm sure there there are a number of others on the forums who have experienced what you are going through and who will be along to help.

Please keep us posted. You will be in my thoughts.

Kathy xxx

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Re: Information please about regional recurrence

Hi Jane Jane,

We have spoke a few times,i am on the triple negative forum on the other site,and you have answered a few queires for me over the months..

Im sorry you have found yourself going through this worrying and waiting game again..

I have had clavicle nodes affected,there has always been some doubt whether mine was a recurrence or they were affected along with my auxilary nodes at diagnosis..
I had a ultrasound,then biopsy in 2 of them which confirmed this,i also had a mri scan which showed a 10cm spread around my collarbone...i had chemo Epi,Fec and Taxotere.I have recently had a Mri scan again and this showed it had all disappeared to my surprise...i still had a node enlarged,so was convinced there was still cancer there..as a extra precaution i had this node removed and tested and it was benign...

I asked once if this was a secondary spread,and was told no,its is a regional spread...Ct and Bone scans were clear..

Not sure whether this has helped..
Take Care and Best of luck for your results
Julie

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Re: Information please about regional recurrence

So sorry to hear your news Hi Jane

I have been following your very interesting posts since my diagnosis 3yrs 3 months ago.

I just don't have any words other than to say how truly sorry I am that you are having more tests. It is everyones worst nightmare come true. In fact, just prior to seeing your message I actually quoted you as being a three year survivor with many nodes involved to a newly diagnosed member of the forum.

My prognosis like yours was poor and again like you I didn't expect to be around over three years on. So seeing your posting has really given me a shock.

So just to tell you that I will be thinking about you and keeping everything crossed that the biopsy will be negative. As we all know the waiting is the worst.

Take good care of yourself.
Joanx

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Re: Information please about regional recurrence

Information please about regional recurrence I'm posting this here as well as on the lsecondaries forum. I had a biopsy yesterday on a lump on a clavicle lymph node. Ultrasound indeterminate and was possibility of a cyst but needle biopsy yielded no liquid so had full biopsy of solid lump, (Biopsy by the wa was agony..like electrical current coursing through my arm and shoulder).

Get the results next week, and if its cancer it will be more scans cause of heighetned risk of further spread...then chemo of some kind...assuming this one if it is...is triple negative too.

Has anyone got any information about clavicle spread? (this is 3.5 years since diagnosis but original diagnosis not good so I've been lucky so far.) Interent searches and all those cancer books don't say much, so any experiences please?

Some of you on this forum who I feel are old friends may understand my slightly sardonic twist on this given our many debates on Jane Plant's recurrence...if this is recurrence I'll stick to the UK defintion of Stage IV.....

Its a pretty horrible time..but I know you all know about tears, tests and waiting.

Jane

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Information please about regional recurrence

Information please about regional recurrence