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Second diagnosis - node clearance vs radiotherapy - chemo and herceptin

Hi all

I've had lumpectomy and one node removed. That node had cancer in it. Doc has said node clearance or radiotherapy axilla. I'm having a mental block re clearance and I'm just wondering if anyone else knows anything about the POSNOC trial where clearance was not used? I have to have herceptin and chemo too.

I am not expecting advice from you all but any comments would be appreciated.

Has anyone else had radiotherapy axilla? Herceptin side effects? Chemo?

Any tips for any of it would be much appreciated please and thank you.

Liz

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Hi there. I find it odd that it’s one or the other. I had left axilla clearance and radiotherapy as the radio is to ensure the area is clear of cancer once cancerous nodes and tissue are removed. I had chemo, surgery, a further 6.5 months of chemo, then 25 sessions of radio. I’m on Aromacin as a trial as I’m triple neg and there is no meds after treatment for triple neg. have you queried this with any cancer support workers? It might be an idea to do that. Regards Lainey66 x

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Thank you so much for your prompt reply.

I was told there was a trial where it was either clearance or radiotherapy. I am still looking into it all bit have had lumpectomy- not got all of it so going back for another op and need to decide by 28th Feb.

Thank you again Lainey66.

Hope you have recovered well.

Liz x 💖

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Hi Liz,

Hope you're recovering well after your op,

Not the same situation as you or any info on the trial but thought you'd like an opinion on full node clearance. There are negatives but personally I'm glad I had the clearance.

I had one node involved after sentinel node biopsy so had a mastectomy and full node clearance, chemo plus radiotherapy (25) to armpit area and breast area.

In regards to the full node clearance. My consultant, who has been fantastic, had a long chat with me after surgery about why it was a good idea for me to have it even though no other nodes had cells. He almost apologised for me having it done but said it was worth having the physical proof of hopefully no further spread.

I was give the choice whether to have radiotherapy as was borderline for it but was encouraged to have it and after weighing up options and outcomes I went ahead. The treatment itself for me was relatively easy, I didn't have any immediate after effects luckily but will say that my recon on that side took much longer to heal and isn't as ascetically pleasing as my right (preventative) one which has had no treatment or nodes taken. The skin is very thin and has no real elasticity. I've also had breast cellulitis twice now, which isn't nice but as said for me the worry with not having the clearance would have been worse.

My arm movement is great, I play netball and have no issues, it aches sometimes and feels swollen some mornings but soon clears.

As Lainey said, worth talking to your breast nurse and oncologist further. They should know about any trials etc and advise you accordingly.

Is a very personal choice, and I have to say I don't regret mine. Whatever you choose will be right for you!

Hope this helps (a bit!)

Nix x

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Bless you.

Such a lovely reply.

I am not seeing the ontology before the surgery so I can't seek advice from him. Bummer.

Mat try to see if it is possible to talk to him first.

Thank you so much Nixh.

Liz x 💝

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Hi, bit different to yourself, I had mastectomy and node clearance as the sentinel node tested for cancer at time of biopsy. Had 6 chemo sessions to begin with and herceptin injections every 3 weeks towards end of chemo. It's difficult to separate side effects of each thing when they run alongside one another!

I do recall herceptin being a little stingy as it went in, its via an injection to thigh, alternated each time, and is administered slowly over 5 mins. I sometimes had shortness of breath, heart palpitations which on 2 separate occasions I visited oncology ward to have observations done to make sure it was just the herceptin side effects which it always was, you soon get used to how it makes you feel! i didn't mind going every 3 weeks for it as it felt like a safety blanket and staff were always lovely.

I would say to just be sure to ask everything you need to and trust the docs. Best wishes x

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Thank you Vaclav x

I really appreciate your reply.

Just overwhelmed right now with it all.

Thank you 💝

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Hi, sorry you're having a tough time and good luck with everything. I was diagnosed with stage 3b, 2 tumours and 3 nodes, 100% her2+ and 40% oestrogen +. I had 8 cycles of chemo Jan-June 2017 to reduce the tumours, it was a fairly standard treatment except that as I was younger than average and mega fit (not any more!) they decided to treat extra-aggressively and I had slightly higher doses. The second cycle of 4 - the taxere group - was really tough for me and I had very strong side effects. I had docetaxol with perjeta and herceptin, all intravenously. I won't lie, it was bloody awful BUT it got me a full pathological response prior to surgery. I then had a wide lumpectomy and full node removal in July and following tests it was found that I had heart damage from the herceptin. This is unlucky but by no means unheard of and before continuing with herceptin only, I had a 6 week break and was put on heart medication which I'm still on and is working very well. I just had a herceptin in the leg yesterday, I have 6 more to go. If you have 4 as part of chemo you then have 14 follow on shots in the leg. I was also unlucky to get a seroma which burst but eventually started radiotherapy, I had 33 sessions. Last August I started tamoxifen so all I can say is it's quite a battering but you will manage, and you will come through it. Setbacks seem like the end of the world but you have to trust your team and the heart meds to resolve herceptin issues are very much tried and tested.

I know there is a move now towards selected node clearance but it wasn't offered at my hospital. In any case with 3 positive I would be borderline for it anyway . I healed very well from the node part of surgery, my arm sometimes feels constricted right in the armpit but it is uncomfortable rather than painful and I still do my exercises religiously. I do have full movement of my arm and think I got that within about 2 months.

So for me I like to think I'm on the home straight! The herceptin is not so bad, the injection isn't pain free but it is more than bearable once every 3 Weeks. I get localised pain for 24-48 hours after it and my nails, having started to recover after chemo are now crappy again. The tamoxifen I am finding tougher, it's put me into chemical menopause with lots of hot flushes, headaches, insomnia and joint pain.

I am sure your experience will be slightly different as it seems your surgery has been done first. Make sure you get perjeta, it's the best chemo drug for her2. I live in Spain where it is given routinely, it was being limited by NCE in some areas of the U.K. but my mum tells me she heard on the radio it is to be made available to all her2+ patients.

I wish you the very best of luck, it's very frightening and definitely life changing but ask for help if you need it and remember there are drugs to counteract almost all the side effects.

Please message me if I can help.

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Hi Raggarty

I am so sorry you have had such a horrible time. Glad you are now coming through the other side and I hope your fitness soon picks up.

There are so many things that we have to think about.

I have a few other health issues and still have problems with my feet/muscles which I can never be sure but I do wonder if it was the tamoxifen. Like yourself, I didn't get on with it. Had bad side effects.

Thank you for your reply.

I really appreciate it.

I wish you well for the future.

I had acupuncture for the hot flushes. It worked really well for me. Maybe it's worth a try for you. I also had bad headaches especially when I first started taking it.

Lots of love to you Raggarty.

Liz 💝

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Hi Liz

Well I take my hat off to you for your amazing strength and attitude. I have tried to be one of these people who seem to be at peace with their diagnosis and treatment but I liked my life more before cancer. It's early days for me coming through the other side but my old life was marathon training and a whole community of runners and I sometimes feel very lost without that. As you say, there is a lot to think about and peripheral nerve damage, muscle damage, menopause, hair, nails, emotions.....I don't think I was prepared for a lot of it to be honest. My concentration is still not what it was but I think it is slowly improving. Still, I know I have been lucky .

I have read about acupuncture, the thing is I am scared it will hurt! I was terrified of needles before my diagnosis and whilst I've got it under control I don't know whether I could volunteer for more. What did you feel?

Did you do 5 or 10 years on tamoxifen? i never suffered with headaches before cancer and they are a bugger!

I think there is some great shared advice on here about the trial and also having to take decisions quickly that we don't feel qualified to make....I hope it all helps you and you can move forward.

Very best wishes to all.

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Dear Raggarty

Thank you for your reply.

I took Tamoxifen for 5 years.

Acupuncture is not as bad as all the needles you've had to endure. It certainly helped my hot flushes which were awful when I look back. Hindsight is a wonderful thing x

I hope you can get back to your running very soon Raggarty. It is all so shocking and hard to deal with the diagnosis. I don't think anything can prepare us for any of it.

Lots of love to you 💝

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I did a lot of digging around about this as I was offered a place in the POSNOC trial. They are trying to validate whether women are being over treated with the axilla radiotherapy or clearance. My digging around confirmed that a big US trial had concluded in December 2017 with the view that outcomes were the same whether you had an axilla intervention or not. This is what the POSNOC study is looking at in the UK. Do you want me to dig out the reference?

Good luck with your ongoing treatment.

Anne

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Dear Ewig

Oh my Goodness. Yes please x

I am struggling to decide so much.

I have read bits bit I'm back at work post lumpectomy and sentinel node. Got to have more taken and doc wants my decision by 28th Feb but not seeing oncologist until after next op on 7th March so u can't speak to him.

Curious? If you don't mind me asking, did you have clearance?

Cannot thank you enough.

Liz xxx

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I'm just doing a bit of Swedish death cleaning. (Google it if you don't know what it is ☺). I'll get back to you later. X

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ncbi.nlm.nih.gov/pmc/articl...

Sorry about the delay in getting back to you.

The POSNOC trial is also interesting to read about. I was invited to take part but got the sense they were trying to fully evidence what they already thought, that treatment to the axilla was over treatment.

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Thank you so much for getting back to me x

Going to see the doc tomorrow x not sure of the type of cancer in my node and I'm thinking that may make a difference.

Will find out more tomorrow x

Thank you x

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Hi Squeezebox, I'm not sure what your financial position is or your attitude to paying for health advice but although my cancer was found on routine mamogram and all treated very well on the NHS I felt that it was very much out of my control and I went from a bit of DCIS to be removed to 22mm triple negative invasive lump needing chemo. Being told what the treatment would be but not always having the time & opportunity to really discuss pros and cons of all the options for me as an individual and what was the latest research telling us etc. So I asked around for who was the "go to" oncology consultant in the area and paid to see him privately. This cost me £200 for an initial consultation but I got to see them almost immediately one early evening (so you might be OK before Feb 28) and we spent a good hour and a half throwing around all the sorts of questions you are asking, with him giving honest but of course very expert answers about options, what we know, don't know etc etc. and without me feeling guilty about taking this time. I left feeling so much more in control and informed although as we know there's so much we still don't know about this disease and this was money very well spent. I've consulted him a couple of times since completing my treatment. So just a thought about an option you might consider. Good luck Mary

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Oh my Goodness MaryEB.

I HAVE ONLY JUST SEEN YOUR REPLY. I DON'T HAVE MYCH MONEY BUT WHAT A GOOD IDEA. THANK YOU SO MUCH.

I MAY WELL DO THIS. I USED YO WORK IN PRIVATE HEALTH CARE AND would probably have advised someone else to do this.

Just not been thinking syraight. Thank you so much.

Hope all is better for you now x

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You're more than welcome. Passing it forward as they say. It took a friend to suggest the same course of action to me, this disease is just so complex and overwhelming we can't get our heads around everything and missing the obvious very easy. Just had my first clear mamogram, a few residual side effects but all in all doing OK thanks. Best wishes for your treatment whatever you choose. Kind regards Mary

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Morning Squeezebox, After mastectomy and node clearance I had chemo/Herceptin injections for the 12 months and radiotherapy. I had few side effects from the Herceptin. Sorry no knowledge of the clinical trial. Best of luck. sue

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Thank you for your reply x

Hope you are feeling well now x

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Thank you SuePs1958.

Good to hear you had few side effects.

Hope you are in a good place now x

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Really good ty. 4yrs on, retired and living life as never before. Amazing the silver linings that you find xx

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Brilliant x

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Hi Squeezebox,

I also had one node removed, which had cancer in it.

Consultant didn’t seem too worried, and said the chemo and radio would take care of anything else....so I didn’t have the full clearance.

Originally was going on Posnoc but missed the deadline.

I’ve decided to trust that all will be ok- !

Have now finished chemo, radio and am just on 3 weekly injections of Herceptin .

I could’ve pushed for full clearance but tbh was scared of getting lymphoedema...

There is a move away from clearance in some hospitals- i attend a large well- known one with a good reputation for research.

There are no guarantees either way, so discuss it with your consultant until you are happy with your decision.

All the best with your treatment x

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Thank you x

Lots of liv

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Lots of love x

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I had clearance and radiotheraphy to the underarm 14yrs ago. I had a very agressive TN with poor prognosis so took what they could throw at me. In those days we were told to rest the arm but l had to go straight back to work as an electricians mate and never had any problems with it apart from occasional pain in the area for many years afterwards.

Josie x

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