Hi,
I had 18 nodes removed 16 were infected! biggest shock ever, never expected that! cried so much!
Had my op in March, going back in on 14th April to have a very narrow margin removed of pre cancerous cells.
Then thankfully l will start chemo and radio and then hormone drugs.
It is the long wait for chemo, feels as though you want to start ‘yesterday’ if you know what l mean.
Such terrible thoughts go through your head night and day
Love
Sandra x
Hi Sandra
Just to tell you about my friend who had 14 lymph nodes removed all positive. She also only had her first chemo as she was so ill afterwards she refused point blank to have any more - very stubborn person.
Anyway nearly 10 years on she is still absolutely fine - and as stubborn as ever.
Anne xx
Hi Anne,
Gosh was your friend ‘stubborn’ or ‘very brave’ l want whatever they throw at me, just want to ‘live’
Hopefully l can take the chemo with not too much of a problem!!
Don’t think however bad the chemo got, l would refuse it!
too frightened of the other option!
Thank you for the feedback
Love
Sandra xxx
Hi Sandra
Like you I will take everything they throw at me that will help keep this b…r at bay.
I’m not sure if my friend is brave or stubborn - definitely thrawn as we say in Scotland. She did have a really bad time on first chemo as she has glycoma and her eyes were badly affected. She is also a religious woman and just said what will be will be, despite her families encouragement to have more chemo - some character.
I wish you the best with your chemo I remember that waiting and the relief when you get started. Before you know it will be done and dusted. I did not have a bad time on chemo and wish you the same.
Anne xx
Hi All
I had full node clearance which my surgoen and onc still keep commenting high into my armpit and upto the collar bone, results 15/20 affected.
This was Dec 05, clocked in at stage 3C AND still doing good.
Debbie
Has anyone had a full clearance AFTER chemo. I had only one sentinel node affected when I had my mx. The surrounding 4 nodes were clear.
I have since had 6 x taxotere. I am hoping that after such a strong dose of chemo and only one node affected whilst the surrounding ones were clear I would not need to have a full clearance of the axilla.
My oncologist disagrees and wants the whole lot out.
Am I being dumb to question this and decide not to have the op. to remove them?
My cells were grade 3 and I had 2 triple neg. small tumours, both less than 2 cms.
Anyone else out there decided to forgo the full clearance?
Hi Hazel,
Not in your situation, having had 2 lumpectomies and now waiting a mx full node clearance in first op 16/18 positive.
If my onc said he would like a full clearance l would grab it with both hands, this disease has proved it has no guidlines! it will do what it wants, when it wants. So grab everything you can.
Take Care
Sandra xxx
Hi Hazel
Am having a full clearance in a couple of weeks. When they did my sentinel node test the dye went to 3 nodes rather than just 1, so the surgeon took all 3. 1 turned out to have cancer in it so he said I needed a full clearance.
The reason given was that they are like branches and that 1 node could lead to others that are also effected. So while two were clear that one could have passed the cancer to the nodes that are attached to it.(Sorry if I am confusing you as this seems much more complicated when I am trying to type it)I suppose this is a safety net to make sure they are not leaving any cancer in your body. Am not sure if I have helped at all. dx
hi hazel
2005 i had grade 3, 4.5cm idc - had chemo 4xac & 4xtaxotere follwed by wle & full ax clearance - altho i asked for snb was not avaiable at that time & all nodes were clear
2009 new dx opposite side - this time snb available - had to have mx as 3 tumours, snb came back 1/7 positive - argggghhhhh!
was sooooo upset did lots of research & talking as didn’t want ax clearance again as now it was my dominant side
was quoted loads of %s but after 10weeks having scans & appts did have clearance & yes the rest of the nodes were clear but had to change my thinking & see this as a positive & not an unnecessary further surgery
it’s so hard as all the research & numbers can never tell you where you’ll actually fall in stats!
if you’d like to pm please do
good luck love jk x
Hazelnut - yep me, I had a full clearance post chemo (4 FEC, 4 TAX), my Onc wanted to get on with the chemo, grade 3, ER+, HER2+, PR+ and didn’t want to hang about for me to have another op/recovery etc. I must admit at the time, all I could think of was my blasted lymph nodes and if it was spreading, but it hadn’t. When they did the SNB with my lumpectomy initally, there were 4 nodes showing cancer and when I went into have a full clearance post chemo at the end of 2009 there were no more. So chemo done its job, or there were never any more than 4, I will never know. Better off without them, see it as an insurance policy. God forbid, if it were to return, its much harder to detect in the lymph nodes and when it has been identified, hard to treat. Get them out! Don’t get hung about the numbers, I don’t think it matters if its in 1 or 21! The one thing I really wish is that my hospital had the piece of kit that tests the sentinel node there and then in theatre, so if it is showing signs of cancer, they do a full clearance there and then which would have avoided me having to have another op. But hey ho, it costs about £40k. Best of luck
x
Many thanks to all of you who replied to me. It does help so much to know there are others out there who are having or have had to cope with the same problems and decisions.
I have yet to meet or hear of anyone who has refused the full clearance so I guess it can’t be that bad.
The big question is… When will I be able to comfortably wear a rucksac again? Walking is the great love of my life!
Is a normal active life possible after such invasive surgery or do you have to be careful and wrap yoursef in cotton wool for the rest of your life in order to avoid infection in the arm?
My thoughts are with all of you who are about to have full clearance.
I will probably take everyones advice and have it done but oh how I wish there was another way of finding out if there was still any cancer cells lurking there!
Hugs Hazel
Hi Hazel,
Good Luck in whatever you decide, l am sure you will make the right decision for you.
Having had a Lumpectomy and full clearance on the 15th March, last week was the first week they didn’t draw any seroma from under the arm! and it does feel uncomfortable, l am due back tomorrow, so not sure if they will draw more off, or wait for it to settle! So with regards to your rucksac, l wouldn’t feel comfortable wearing one, l think it would just cause problems with early scar tissue and the swelling that is already there.
But saying that we are all different, certainly you don’t have to wrap yourself in cotton wool, just be aware if you damage the skin, make sure you clean the area with antiseptic.
Sandra x
Hi Hazel
I had MX and full clearance in one operation, but to reassure you, my scar had fully healed, and I had more or less full movement in my arm by about 8 weeks after the op. No infections or seromas. I had some slight cording, where you can’t straighten your arm fully, but gentle exercises every day will help these (I sat on the sofa gently stretching my arm out each evening, as well as doing the physio exercises each morning).
I would feel happy wearing a rucksac now, but not anything too heavy. I get a sore elbow (weird, I think!) if I over-exercise that arm now, but a balanced rucksac would be OK I think.
You will be able to live a normal life again, you just have to be mindful.
Take care
xxx
Hazel,
I had mx with expander reconstruction and full node clearance in January, having completed FEC/Taxol regime early December. I recovered very rapidly, was in hospital 3 nights, and didn’t have any complications with my arm. Was driving my car after 9 days and back in the gym (gently) after 3 weeks.
The first time I went swimming after rads (which was Feb/March) my chest felt a little tight for a length or two of the pool, but i think that was due to the implant rather than the lymph operation.
I was very careful for about a fortnight after the op - lifted nothing more than a kettle, but after about a month really was 99% fine. one thing that many of us feel is an odd numbness/pain down the upper part of the affected arm, but thet’s nearly gone for me now.
I have been carrying rucksacks, shopping, lifting children out of the bath etc and I’m totally fine.
i hope you find this reassuring. I’m 45 by the way.
Hi Hazel
Like the other women I would go for it without a second thought - anything that would help keep the c at bay. I had full node clearance on my right side and it did not stopped me doing anything that I did before. A few month afterwards I was shoveling gravel in the garden and would have no problem carrying a rucksack. Important thing is to do your excercises and be sensible about building up your arm slowly. If I am overdoing it - my arm aches a bit and I stop. I am lucky enough not to suffer from lymphodema but I personally think wrapping your arm up in cotton wool is not healthy. I remember someone on this site said their onc said treat your arm like a new baby and take care of it and do things slowly, building up. Carrying rucksack is not actually putting strain on your arm but rather on your back so I don’t see it as a problem.
Good luck with your decision.
Anne xx
Oh and someone else said - I carry antiobiotic creams everywhere I go. x
Hi Ladies,
Just a question, as l have already said l am still having problems with seroma, l know two of the ladies l was in hospital are also having problems! l have been doing my excercises from day one, and l did drive after 10 days.
l am now wondering why, if there is a reason, l am still having seroma problems.
I am now using my arm as normal, but l do still have this problem! any answers please?
Sandra
Hi all
I had a lot of trouble as each chemo set the area right back, & after the last 1 on 18th Dec, it just didn’t seem to improve at all. Although I had a full range of movement I also had a lot of pain despite doing all the exercises several times a day. However I read Flora29’S TIP (thanks) about stretching while watching telly, & I do think it helped. In the last 2 weeks it has improved dramatically, while still not totally pain free.
Re the rucksack - I always carried my bag on my left shoulder & was told by a nurse on the day of diagnosis never to do that again, but as a rucksack is distributing the weight across your back, I wouldn’t have thought it would be a problem, once it feels comfortable for you.
Carrying antiseptic cream is a good idea, I hadn’t thought of it, but for sure if I need it I’ll be out somewhere where I can’t get it, so will start doing that, also those titchy bottles of handwashing gel might be handy to have as well.
Hello everyone,
It’s certainly interesting how everyone has a different no. of lymph nodes. On 4th May I had 28 removed and 27 had cancer so I’m still feeling devastated.
My arm is getting stronger now though I think I might have some fluid build up around my scar. Am thinking about phoning my breast care nurse tomorrow to chat about it. Don’t know if it’s lymphodema or if it can be removed with a syringe.
Gill x
Hi Sandra
I don’t know when you had your op, but I think it is quite common for it to take a while for the fluid to clear. I was going in twice a week to have mine drained for about a month before it cleared up - surgeon seemed to think that was normal. Has your been going on longer than that?
finty