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Lymph removal or not?

16 REPLIES 16
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Re: Lymph removal or not?

Hi, This is a great thread for me had mx and sentinel nodes out showed a hormone receptive  cancer had spread into 1 node, i too have been offered onto the trial my first gut instinct is to have the surgery first then start chemo , the 4% chance of further problems by not having my lymph glands out does not sound much unless you are one of the 4% . My only concern is lymhodema but you cope with whats thrown at you dont you ? thanks for everyones input hard decisions to make for us all .

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Re: Lymph removal or not?

Thank you Helly I will keep you posted, , surgery 13 June. 

 

I have started on Letrozole and continuing on Herceptin . I seem to have continuous aches and pains! I know there are SE with above lomg term drugs. My right thumb had suddenly gone stiff and  sore and unable to bend it! Anyone else suffering same?

Keep strong all Sue xxx

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Re: Lymph removal or not?

Hi Helly, I had a micromet on one node and my oncologist recommended a full clearance, I was concerned about this but more concerned about the potential outcome of not having it done. I therefore did have the ANC, that was 4 years ago and I'm still fit and well, no problems on my surgery side. Good luck with your decision.

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Re: Lymph removal or not?

Hi sue,  I have also read this thread with interest  as I was found to have macromet to 1 out of 2 sentinel nodes with the plan for radiotherapy to the axilla however  my oncologist  wants to discuss clearance when chemo finished which I am a bit twitchy about.   If you feel up to an update after your surgery I would be very interested in the outcome,  good luck xxx

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Re: Lymph removal or not?

Thanks Aileen,

 

Just an update, I have decided to have the further surgery, being the removal of the lymph nodes.  After speaking to a lot of people and experts.  It seems the decision to remove cancer is the right one. Even though the  body is receiveing chemo and radio treatment and hormone therapy the removal is the best option.  My partner was diognosed in July 15 with oesphageal cancer.  Not a good one! Unfortunaly because the oesphageal tumour had spread to lymph nodes in his chest surgery wasnt an option.  His treatment strong chemo for six months.  Tumour and LN have shrunk, and seems to be staying put!! Which is good news, and like a lot of people suffering from this dreadful disease , he is living with cancer rather than dying with it!  He wants me to have the LN removed, and said if he had the chance to have his removed he would! That says it all to me.  It is all so confusing and complicated to understand, and it does help to read this forum to hear other peoples experiences.

 

Take care, Love Sue xxx

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Re: Lymph removal or not?

Hi Sue,

Thank you for starting this thread - it is exactly what I am thinking about now. I have had 4 out of 6 chemo sessions and am due to have a lumpectomy in the summer. I think they plan to remove my lymph nodes too but I am not sure I want that as the sentinal node biopsy only discovered isolated cancers cells so surely they will have been killed by the chemo? I also would rather keep my lymph nodes so that if cancer ever does return they are there to prevent the spread further afield. I am feeling confused and can't wait to meet with the surgeon in a months time to discuss this further.

I think that a scan can only show cancer if it is big enough. The surgeon told me after my CT scan that isolated cells do not show on a scan.

Hope you make the right decision for you.

Aileen

 

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Re: Lymph removal or not?

Also just commenced Herceptin only do you think there will be any sideceffects without the Doxetaxal? Xx
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Re: Lymph removal or not?

Hi Yasmin

Me again, thanks again for the advice and support. 

Im still waiting for the appt to see the Radiotherapist and hopefully he will explain why he too feels I don't need surgery too!

Sone of my family friends are worried that I have not made the right choice and I should have surgery to be completely 100 % that its gone!

Does anyone know if they can do a scan to confirm no cancer in lymph nodes?

My partner ( whom is undergoing treatment for cancer, has had a scan recently and node involvement was shown)

Feeling confused ! Sue xx

 

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Re: Lymph removal or not?

Hi Yasmin,

Thank you so much for your reply and advice,  much appreciated! 

 

My BCN called mw this afternoon,  after their weekly meeting with medical experts. She says the Radiotherapy consultant was there from Christies and he rad my file and agreed that hecdidnt feel I needed further surgery, and that that an appt woyld be arranged for me to meet him. I would then commence radiotherapy in the next week or so.  I felt much better, and even more so that I can meet with him to alay my fears of the cancer still being in the nodes. I asked if I could have a scan to check if clear, but they said the scan would not show anything?  I feel I can now cope with the last journey of the rads and build my strengh up again!  I have felt tired and weaker on no 4 &5 chemo, the chest infection and cold not helping. Awful running sting eyes and nose at the moment. 

Thanks for feedback and all tge very best to you.

Love Sue xx

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Re: Lymph removal or not?

Hi Sue,

I really feel for you having to grapple with this dilemma - you're not being silly at all.  I'm 42 and was/am in a very similar situaion (grade 3 / HER2+) and following a mastectomy, chemo, and starting herceptin, I'm now in the last week of radiotherapy.  Even though my SNB showed 6 out of the 8 nodes taken were postive I chose to not to have surgery to remove my lymph nodes but rather rely on radiotherapy.  My reasoning for this was/is I'm terrified of developing lymphodema (and the associated issues you mentioned) and there is a slightly reduced risk of this with radio vs. surgery.  I am fortunate that my consultant oncologist and surgeon were both supportive of my decision.  Both my radiotherapy consultant and surgeon said that whilst in the past the standard approach for someone in my situation was to do a full nodal clearance, increasingly radiotherapy is being used to treat nodal spread.  Now of course this could just be the experience of my medical team and the hospital I'm being treated at so please do not take it as gospel!  Your doctors advice is paramount but at the same time you should also feel comfortable with the choices being made as ultimately it is your decision to make.  But whatever decision you come to, do not beat yourself up with "what ifs".  I'm truly hoping that once all the b/s and treatment is over with I'll be living my life to the fullest again; but if I am horrribly unlucky and the cancer ever returns in some distant future I'm determined not to regret anything.  

Yasmin xx

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Re: Lymph removal or not?

Hi 

I feel in a real dilemma!   I was diagnosed in Oct 15 with grade 2 /3 BC. Had lumpectomy and sentinle biopsy in Nov 15 . I had a liitle swelling drained twice and cording.  I commendes FC in Dec 15 and had my last chemo on 1st April.  I managed to get thru pretty well working through the treatments. It was only the second two treatments when it felt under parr, mainly due to me getting a chest infection.  

I was prepared for radio sessions and Herceptin due to being Her2+ but then told need more surgery to remove all nodes as found cancer in three when did biopsy. I saw surgeon this week and told him i really didnt want the further surgery to remove the nodes . I explained that had lumpectomy chemo then radio herceptin and drug for ten years, surely that was enough?  My concerns were that I could suffer long term chronic problems with the surgery, being lymphodema , infection, cording , possible nerve damage,  something I didn't want to put my body through.   My wonderful BCN listended with the Dr and said they understood my concerns and said thatcat their weekly session with the medical specailist , and tge radiotherapy consultant they would ask their opinion discussing my case. I felt better and said that if they felt I should go with the surgery then I would take their vauled opinion.  Its just that I wonder whether they are being over cautious?  I was upsetvto be told going onnthe drug for ten years which has side effects of hot sweats, muscle ache, and possible bone damage ( Ive had a bone scan to check the condition of my bones now) I'm 59 this year and consder my self fit and healthy, I know the treatment is to save my life , but it also seems to be damaging my body for the best upcoming years. Am I being silly? I want to be sensible in my choices,  decisions!  

Thanks Sue xx 

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Re: Lymph removal or not?

Hi

 

I had lymph node involvement when diagnosed in August 15. I had a lumpectomy and full node clearance on the 29th February 16 . I had 17 nodes removed and only one actually contained scar tissue ( I had chemo before op) . I am now nearly back to full strength and have full movement back in my arm.

 

I was very sore for about 4 weeks and found the exercises really difficult at times but persevered .

 

I never questioned my oncologist decision and was always told from the beginning that any node involvement would mean a full clearance and I am happy with this. I am now waiting for radiotherapy .

 

Debs xx

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Re: Lymph removal or not?

I am also 43 and was offered the posnoc trial.  I was told that in no treatment group there would be just chemo, so no surgery or radiotherapy to the armpit, although radiotherapy to the chest wall was allowed.  I weighed up the options.  They took two nodes in my SNB and both were positive, 6 mm and 2 mm.  I decided not to go with the trial because my cancer is grade 3, Her2+ and so has a high potential to be spread and I have school age children.  Because both the nodes taken were positive, I had no idea how many more positive nodes I may have had.

 

The recovery from the second surgery was very hard, and 3 months on I still feel like I'm not fully there.  I had quite a bit of cording and I employed a private physio who was excellent because there was a 2 month wait for NHS physio and I wanted to get moving.  The results from my clearance was no more cancer was found in the nodes taken in the second surgery.  Although the surgery was not necessary, I don't regret doing it because I know that worrying about what was in me would have preoccupied my mind, and I got reassurance from my results.

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Re: Lymph removal or not?

Hi I don't get to come online much, but wanted to share my experience. I'm on the posnoc trial and got selected for no further surgery ( had lump and sentinel lymph nodes removed) - they only found small traces in one lymph node- I didn't want anymore surgery if it was necessary they said chemo and rads should get rid of any stray cells. Was happy with the decision x
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Re: Lymph removal or not?

Hi,Not sure if this will help but I had a lumpectomy and sential node removal on 7th March,  got my results last week and was told it had spread to my lymph nodes and was offered either surgery or the option to join the trial.  I thought about it but for my own peace of mind decided I wanted to know if it was in the rest of my lymph nodes and opted for surgery.  

 

I was very concerend about the side effects after reading all through it and wasnt sure if I had made the right decision.  I luckily got a very quick appointment for the 2nd surgery and had it done on Thursday (7th April) so I am now 3 days post op.  I must admit I was scared waking up from the anaesthetic but am very happy to say that so far no major problems, yes I am sore and it is more painful than it was after the lumpectomy and SN removal (i have also had to have my margins re done so had further surgery on the breast tissue as well), I have a drain from the wound which is a bit of a pain but nothing I cant put up with for a few days.

 

I glad, for my own peace of mind, that I went for surgery,  the thought of not having any treatment on the lymph nodes (if I wasnt chosen for surgery or radiotherpy on the trial) and not knowing if it had spread to them was not really an option for me,  at 43 I have a lot of years ahead and think for me personally, knowing it is gone it better than the unknown.

 

I have a really good BCN who I discussed the side effects of surgery with, and I know that the side effects can occur in the years to come, but for me, the decision to have surgery was the right one.

 

As it has speard to the lymph nodes I now also need Chemo as well as radiotherapy and then Tamoxifen for 5 years.  I was origionally told it was just surgery and radio but they didnt realise it has spread.

 

Take care

Julie x

 

 

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Re: Lymph removal or not?

For me they biopsied a lymph node as well as my lump and told me it was +ve for cancer cells. So I had a lumpectomy and lymph node removal. When they analysed the lymph nodes they were negative, so they went back to the original biopsy, looked at that again and decided it was negative!! I had very little trouble after the lymph node removal, had a full range of movement within days. Have had a small amount of swelling due to lymphoedema in the side of my breast but nothing in my arm as yet. Op was in early Feb. Had my first chemo FEC on April 1st, no nausea or sickness, have felt perfectly normal until now but yesterday had oral thrush which they have given me Fluconazole.
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Lymph removal or not?

hi, I had a mastectomy last week and while having wound checked yesterday found out that it's spread to lymph node they removed during surgery. Have  been asked to go onto a trial as I fit criteria. Half will have chemo and radiotherapy other half of people have all lymph nodes removed as well as chemo and radiotherapy. As much as I would like to help with the trial, it seems the side effects of lymph removal can be pretty awful?! Have two days to let them know my decision! Any thoughts would be much appreciated.