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Large lymph node involvement

28 REPLIES 28
chalee
Member

Re: Large lymph node involvement

Hello again I\'m not taking a calcium supplement. Looks like that is another thing for me to educate my local gp\'s about. (Don\'t they hate it when you say that you\'ve been using the internet!) However I am taking part in a trial that includes occasional bone scans so will know if there is a problem. The Maggie Centres are great though, I have been to the Edinburgh one. It took me a wee while to pluck up the courage to go but it helps to have somewhere \'safe\' to get used to saying the words IV\'E GOT CANCER at the start of the whole ordeal! (They are in inspirational buildings too)

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Re: Large lymph node involvement

Hi Chalee Good to hear from you. I was diagnosed last February (went along for screening myself as I had reached 50). I\'ve been on tamoxifen since the beginning of my rads - around Sept 2005. Like you, I read about Arimidex and asked my oncologist. He said as I was pre-meno (although like you I would consider myself post-meno as I have not had a period since my first dose of chemo) it would be best to have 3 years on taxoxifen then change to Arimidex. He told me that tamoxifen has an added ingredient to help osteoporosis (sorry, cannot spell) which Arimidex does not. Are you taking a calcium supplement? At the time I wondered if it was all to do with money (cynical again, but arimidex is much more expensive) but I guess I have accepted his views for the moment. No, I went to Glasgow for my treatment. I had a few choices but decided on Glasgow. I feel I made the right decision. I have met lots of great people and have, and still do, get great support from the Maggie Centre and Tak Tent. However, I have been to the Dundee Maggie a few times. Like you I have hot flushes, night sweats and aching joints. However, they are not too bad and I consider myself lucky when I hear other stories.

Got to go for now.

Jeannie

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Re: Large lymph node involvement

Jane - Many thanks Thank you so much for your informative reply. It\'s great to hear your doing well. I feel my next stage may be an independent oncologist.
However, I am getting a little cynical because the Scottish Medical Ombudsman said he was \"independent\" (?) and I did wonder how he could come up with a report when I was never asked any questions. I\'ve waited for 8 months for this report and to be quite honest, I think it has been a waste of time. Will keep chipping away............

Regards.

Jeannie

chalee
Member

Re: Large lymph node involvement

Jeannie Hi there. You and I have a very similar profile, right down to the name! I was pre-meno when diagnosed at 46 (2003). Am 50 this year. Misdiagnosed for who knows how long. Had been attending clinic for years for other breast probs and had had all the right tests. Trusted my bc surgeon (he was always very thorough). Three years down the line I am physically really well but can\'t quite get past that grief and anger at what has happened.
Was on tamoxifen until I read in the Herald last year that Scottish oncs could now prescribe Arimidex for primary bc. Contacted mine who agreed that because I was a high risk and now post -meno I could have it. Started that in October last year. Always had hot flushes and night sweats, aching joints and all the usual tamoxifen treats and this has more or less stayed the same with Arimidex. What I wouldn\'t give for a good night\'s sleep!
It\'s good to hear from you. Did you have your treatment in Ninewells?

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Re: Large lymph node involvement

---for jeannie I too am currently going thro a medical negligence claim and as I had lymph node involvement we are at the moment trying to ascertain how much difference the time delay [10 months] made. The pathologist is trying to work back from the current data to decide how many and the likely size of the lymph nodes at the time of misdiagnosis. I understand that this is not an exact science but a professional opinion and a pathologist is the best person to give it.
With medical negligence no-one can admit anything in case it goes to court .
Good luck
jakey

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Re: Large lymph node involvement

--- Hi Jeanie, i dont know if they can \'age it\', i dought it. But from knowing that the cancer was incapsulated he knew it hadnt been there too long.
I understand what Jane says about the cancer to other organs coming from the main site because i had only one node infected, encapsulated , so they said they know nothing had broken off it but i still had to have chemo incase of stray cells from the main lump had gone around my body (grade 2). Thats if i had understood what jane was saying?

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Re: Large lymph node involvement

For Jeannie I was misdiagnosed follwoing a mammogram recall and there was delay in diagnsois of 7 months. Through a solicitor I got an independent oncologist\'s report to see if I had a claim for compensation. (this cost me £1000-but he was a top consultant.)I I was advised that I don\'t because even though the independent onc reckoned the doctor who misdiagnosed me was negilgent in English law (I think you are in Scotland and may be different there) you also have to prove causation..which means that you have to show that but for the negligence you would have had a 50% chance of 10 year survival. In my case because my cancer was aggressive it was estimated that my survival chances may have been reduced from 42% to 18%. Despite not having a case for I have pursued compaints against the hospital trust and the doctor through the General Medical Council. The latter is still going on...3 years after my misdiagnosis and 2 years after I first complained..luckily I\'m still well and alive.

On the bit about spread: yes breast cancer does spread to the lymph nodes in the armpit, but if there is metastic spread its not that the cancer goes to distant sites via the armpit..it goes direct..at least that is my understanding. Lymph node involvment provides kind of \'circumstantial evidence\' that the cancer may have spread. (Thanks to Susan Love\'s Breast Book for that phrase.)

Hope this helps and doesn\'t confuse.

Jane

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Re: Large lymph node involvement

Hi Pineapple I would be very interested to know who can tell you how old your node infection is. I have medical negligence and no-one is admitting anything. This may be because they are all covering their own backs. However, I would be interested to know if this is in fact the case or if there is something that I can do about it.

Cheers.

Jeannie

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Re: Large lymph node involvement

Help on cells moving on. Hi Jane
I found what you had written very interesting. I was of the understanding I had 15 out of 20 lymph nodes affected because of the length of time I have had my cancer. I had been to my GP three times asking for a mammogram and refused because I was not 50. She said the swelling and lumps under my armpit were the results of a viral infection. Unfortunately, I trusted her and by the time I put myself into the system it was 4 years later, hence such a large lymph node involvement. However, my oncologist said I was very lucky that it had not spread to other parts. My cancer is Grade 2 which is classed as moderate and I had always thought if it had been Grade 3 I may not have been so lucky. Also, I thought the cancer did spread from the breast to the lymph nodes. If the cancer likes the lymph position it may stay here for quite a long time before moving on hence some people can have a large lymph node involvement and no spread and others could have very little lymph node involvement and secondary sites elsewhere. I would be very interested to hear what other people have to say here.

Cheers

Jeannie

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Re: Large lymph node involvement

Help on cells moving on. Hi Jane
I found what you had written very interesting. I was of the understanding I had 15 out of 20 lymph nodes affected because of the length of time I have had my cancer. I had been to my GP three times asking for a mammogram and refused because I was not 50. She said the swelling and lumps under my armpit were the results of a viral infection. Unfortunately, I trusted her and by the time I put myself into the system it was 4 years later, hence such a large lymph node involvement. However, my oncologist said I was very lucky that it had not spread to other parts. My cancer is Grade 2 which is classed as moderate and I had always thought if it had been Grade 3 I may not have been so lucky. Also, I thought the cancer did spread from the breast to the lymph nodes. If the cancer likes the lymph position it may stay here for quite a long time before moving on hence some people can have a large lymph node involvement and no spread and others could have very little lymph node involvement and secondary sites elsewhere. I would be very interested to hear what other people have to say here.

Cheers

Jeannie

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Re: Large lymph node involvement

Hi Chalee Good to hear from you. I have had exactly the same amount of chemo as yourself. I was told this was the best regime available for my type of cancer and lymph node involvement. I also had 26 sessions of radiotherapy. My cancer is also ER+ and PR+ so I\'m on tamoxifen. Are you? So far I\'ve not been too bad. However, of recent I\'ve been having quite a lot of hot flushes. As I was pre-meno I guess this is to be expected. WE WILL BATTLE ON.

Jeannie

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Re: Large lymph node involvement

on cells moving on Lymph node involvment is an indicator of the capacity of someone\'s particular kind of breast cancer to spread. But the cancer doesn\'t spead from the breast to the lymph nodes and then to other sites. If you get a metastic spread then the cells have spread direct from the breast to a site such as liver, lungs, brain. They spread at the time of the original breast cancer and may lie dormant as micro mets (unseen on scans etc) for a long time.

This is why some people without lymph node involvement still get secondaries and some people with don\'t. Lymph node involvement is one factor telling you about the aggressiveness of the cancer but cells which get to secondary sites don\'t stop off in the nodes. (cells may be spread through the lymphatic system or the vascular system.)

I think what I\'m saying is accurate..if not someone with more medical knowledge please correct.

Jane

chalee
Member

Re: Large lymph node involvement

thanks pineapple Now that is interesting. I must ask my surgeon at my next appointment. Thanks x

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Re: Large lymph node involvement

--- chalee, i am not wanting to but in on this thread as i had one node pos but your question about if they can tell how old the node infection is i think they can. When surgeon told me i had one sentinel node with cancer i freaked out and he said it was nothing to worry about because it was still surrounded with a membrane and this membrane hadnt fractured. So i suppose as time goes on these membranes (dont know if this is the correct terminology as he is French) fracture and cells can then move on.

chalee
Member

Re: Large lymph node involvement

Biopsy I had loads (about 8 I think) core biopsy\'s taken for research purposes. Afterwards I wondered if that amount of interference with the tumour let cancer cells \'bleed\' into the rest of my system. I can\'t see how it couldn\'t really. I wonder if there is a way of telling just how long the nodes had been affected. At the time you think you are doing the right thing.

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Re: Large lymph node involvement

Conjecture Inevitably we all speculate about why we think we got cancer..speculation maybe helps us feel more in control. If we can fathom why we got it, them maybe we can do something to get rid of it. But the reality is that the causes of cancer are complex and not known, and there are no certain cures. In the meatime we all have to live with uncertainty.

So no I don\'t think that activity pumps lymph node spread..absolutely no scientific or medical evidence for this. You couldn\'t get much less active than me..couldn\'t swing a tennis racquet to save my life let alone to hit a ball and I had 23 positive nodes. Not that that proves anything except I had an aggressive cancer and some bad luck, and being misdiagnosed didn\'t help either.

Jane

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Re: Large lymph node involvement

Thanks Cheriepie Thank you for your posting. I only finished my treatment in November and I find although I am coping well, the lymph node involvement freaks me out. It\'s encouraging to hear that others are doing well with much the same involvement. I will be as positive as I can about this. Thank you

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Re: Large lymph node involvement

--- I\'m a bit under-qualified to comment here - only having 4 of 14 nodes positive but I do wonder if lifestyle, especially sports and hobbies, can affect the lymph node spread. One of my hobbies is church bellringing, which involves alot of upper-arm strength, and shoulder/chest muscle control. Much like swimming or racket sports might. Just the sort of activity that could act like a pump on the lymph system, and dislodge cells that would otherwise remain put.

I have since heard of 2 more bellringers who were diagnosed with early BC - and they were both lymph node positive too. That\'s a bit odd given that 70% of all patients usually turn out to be lymph node negative.

This is all conjecture of course, and no doctor would give me time of day I\'m sure, but sometimes I wonder all the same. If lymph node spread can be exagerated by certain types of activity - then the sheer number of positive nodes is perhaps not so important as how established the cancer is (and you aren\'t always told that).

My best-wishes to you all anyway.

Homer
Member

Re: Large lymph node involvement

it\'s not just you i\'m having the same treatment as you, just finished 4 epi\'s,and start my 1st of 8 cmf\'s 20th feb.
i\'m not sure how much rads i\'ll be having yet.

kim x

chalee
Member

Re: Large lymph node involvement

Nodes Hi everybody. I\'m three years post diagnosis and still clear, as far as I know! 5cm tumour and 12 positive nodes. I agree, when you get the node results it is very profoundly shocking to discover you have been walking around with all this going on inside. Especially since I had been going to the Breast Clinic every 6 months for the previous 6 years. (Strangely, I\'m now on annual checkups, seems like once you actually get the dreaded disease you don\'t get to see them as often.)
I\'ve not heard of anyone else having as much chemo as me though. Anyone else had 4 epi and 8 cmf? Or were they just trying to make me feel like they were trying extra hard to cure me?

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Re: Large lymph node involvement

15/20 first posting and i too have wanted to ask this question.
I was originally seen at my BC 18.10.05, diagnosed 13.12.05 after several inconclusive tests. Results ended in 8cm tumour and 15/20 lymph nodes, starting fec chemo tomorrow (a cheap valentine date this year) followed by rads and tamoxifen.
I was pleased to find this thread tonight, I don\'t feel so quite alone now.

Debbie.

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Community Manager

Re: Large lymph node involvement

Hi cheriepie Just tidying up the site so I have removed your 2nd post
Kind regards
Moderator

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Re: Large lymph node involvement

--- ---Sorry , post on twice, cherie, newbie

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Re: Large lymph node involvement

---15 /20 ---Hi there, I had neoadjuvent chemo to shrink tumour, mastectomy and node clearance. 15 out ot 20 nodes were cancerous. While I know that is not good, I am here 18 months post diagnosis with no evidence of disease. It shook me profoundly, but I have decided that some poeple have to to fall on right side of the statistics and it should be us!! I had wished to go back to college /uni but up until recently I couldnt commit the time.. 3 years seemed too long.. so I am now doing a fast track HNC, which I started 16 th January and will finish in June..I then wish to return to the job market, been off raising family.. I hope that all goes well for all of us... take care
cherie

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Re: Large lymph node involvement

Thanks Maddison Thank you for responding. I, like you, only know of people with anything between 1 and 4 lymph nodes so its good to know of others who have lots more and are doing well. I also had a liver ultrasound and bone scan. Glad both were OK. I\'ve had 8 months of chemo and 6 weeks of radiotherapy - just finished in Nov 2005. Now trying to get my life back to some sort of normality. I\'m also taking tamoxifen. I get hot flushes but no other side effects so far. What do you mean by 2 hot spots?

Regards

Jeannie

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Re: Large lymph node involvement

--- Hi Jeannie.

I\'m new to this site as well but i had 16 out of 18 positive nodes. I was horified at first. as most poeple I had spoken to only had six at the most. My surgeon who I trust very much said he had removed as many as possible. Ihad a bone scan which showed 2 hot spots arm and rib(opposite side). had chemo and radiotherapy and so far all seems ok. Taking tamoxifen. have only very slight lymphodema whcih I can cope with. takes a lot of getting used to but reading all the positive things on these forums really helps.

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Re: Large lymph node involvement

Me Hi Jeannie

I had 23/25 nodes with cancer (diagnosed Oct 2003, had pre surgery chemo then the axillary cleraance which showed the 23 with cancer.)

I am currently well. Could write much more but in a rush..hope you get some more responses..there are a few of us..and its not necessarily a bad news story.

Jane

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Community Manager

Re: Large lymph node involvement

Large lymph node involvement Hi all

I have posted this on behalf on Jeannie

Hi

This is my first posting so I hope it works OK. I would like to hear from others with large lymph node involvement. I had 15 out of 19 affected and although I\'ve met lots of other cancer sufferers I haven\'t met anyone with as many lymph nodes involved.

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Community Manager

Large lymph node involvement

Large lymph node involvement