Refused the removal of more lymph nodes

After having a mastectomy 3 months ago I was then givien the option of having the rest taken out and FEC chemo or having just chemo followed by radiotherapy. 6 were removed at the time of operation of which I was positive and the rest were clear. To my way of thinking at the time that if the C had already spread to other parts of my body the removal of all nodes was to be too late and hopefully the chemo and radiotherapy would sort them out. The surgeon was happy about my way of thinking and agreed to leave the rest of the nodes in place. I had stage 2 BC.

Was I stupid thinking this? Has it lowered my chances of secondary cancer I wonder? Have I made a big mistake?

Any comments will be gratefully received :slight_smile:

Bobbin2 -
I had isolated tumour cells in my SN - at the multi-disciplinary meeting to discuss treatments 6 doctors said I should have axillary clearance and 6 said I shouldn’t.
Very helpful eh?! But as you can see there don’t appear to be any hard and fast rules about this.
I had the clearance done and it was agony - much much worse than the mx. They removed 18 nodes in total I think - all clear. I have been left with horrible truncal lymphoedema and have friends who are battling with the miseries of lymphoedema on a daily basis.
You made your decision, it was supported by your medics. Try not to beat yourself up about it.

msmolly…
thank you for your reply. It was my fear that I could suffer the way you and others have. Who knows that at the end of the day if it was the right descission but after your reply I feel a little happier about it. It must be an awful side affect of the op and I really feel for you and others that have found that theirs were all clear. You must have felt angry at the time? I’m not beating myself up about it but have just started questioning my reasoning. At times like this it seems to fly out the window me thinks. I’ve made my bed now I lie in it :slight_smile:
I hope I don’t put anyone off having all nodes taken out if it’s been advised. I had a choice and for me, at the time, it was the only way for me to go.

I’m with msmolly. It is very difficult to be sure whether or not a decision is right when dealing with this horrible disease.

One out of six was affected. That to me seems acceptably low. The risks of lymphodaema as a result of clearance are very real.

I would almost certainly have made the same call, or encouraged my wife to make the same call should we have been in your position.

Paul.

Thanks for your reply Paul :slight_smile:

I am leaving a big chunk of info re: my descission here. I was already at a very low ebb at the time of diagnosis as I suffered a wedge fracture in my spine which really limits me to what I could/can do. It wasn’t diagnosed until 8 months down the line…“it’s muscular”…now I have osteoarthritis. So, my quality of life was not good at the time and I think I was in denial about the seriousness of the C and didn’t really care whether it would take me or not. It’s only now I think about it. I don’t regret making the choice I made and I would have probably made the same choice had I not been depressed at the time. I think what I’m trying to say is that maybe one’s thirst for life is a strong enough reason to go for having the whole lot removed? Not leaving anything to chance and giving it a good a go as possible.

Hope I make sense here :0

you were obviously suffering from the back problem if it made cancer pale in significance. At that time a major clearance and the possibility of lymphodemea might have just been too much and you might just not have recovered well mentally or physically

It was the right decision then, and so it must still be that right decision. You have got a much better quality of life now that you might have had. The medics were happy with your choice, and they know more about the possibility of spread in your case than any of us on here could. Stage 2 is a good result if it had been stage three the surgeons might have thought differently.

I hope you have coped well with the chemo and that your back problems are improving. Pain and limitations in movement can be very debilitating and it must be a good thing that you did not potentially add to that.

Bobbin, what you say makes sense. I can understand your concern, wondering if being more aggressive with treatment may have been a better idea.

The down side is that more aggressive treatment can have impact on quality of life, without actually having a significant benefit in the effect of the treatment. Don’t forget your docs supported your decision.

So the treatment is of necessity always a compromise, and in your case I still think you made a good decision.

Paul.

I think that the fact they gave u a choice has to be a good thing. I wasn’t given a choice presumably as my cancer is grade 3. At sampling they found 2 out of 4 nodes had cancer in them which seemed quite high to me & i thought loads more would be affected. I then went on to have completion clearance where they took another 18 nodes but there wasn’t any cancer in any of them. i’m actually now getting a bit paranoid about lymphoedema & part of me thinks that i needn’t have had them out.
As the others say, don’t beat yourself up about it & the chemo & rads should sort any little blighters which may have been lurking. x

Hi there

my surgeon told me that lymph nodes are in three layers. A full axillary clearance is the removal of all three.
I was told the most common was removal of 2 layers.

I had all three removed and had 9/17 affected. I was given no choice as they had planned to take out two layers but decided during surgery it was necessary for all three to go - something they did warn me could happen. However, it turns out they were only affected in the first two layers. I did go on to develop lymphodema in my arm but I’m not angry about the surgery - the surgeon made the best call he could at the time. To me the priority was always the cancer although getting lymphodema was a real blow.

What will put your mind at rest? Perhaps this is a conversation you need to have with the Oncologist or surgeon. I found it very helpful when the Oncologist talked through the findings of the lymph node surgery. Elinda x

Thank you all for your replies. I have found them very useful and can now put it to rest that I have made the correct decision for myself……at the end of the day, que sera sera as the song goes. The thought of lymphodema horrifies me at this moment in time.

The problem with my back will always be there but I have a plan for when I have reached the end of this episode which I am 100% positive that I will get thru’ and conquer. The most important thing for my back recovery is exercise which fits well in with remission of C but as we all know the exersize bit can be a bit of a problem for us on those lack of energy days. This is a positive ME day today…lol…but it’s not always there and am enjoying that feeling while it lasts :slight_smile:

Again, a big thanks to you all for your supportive comments…it has really helped.

Hugs to us all. xxxx

Hi

I had chemo followed by WLE. I had SNB during surgery, it came back clear.
4 weeks later I feel a lump under my armpit - tested and contained cancer cells. Week later as advised by surgeon I had a level 3 full axillary clearance. No drain , dis solvable stitches with glue sealing.
A week later for results - I had 31 lymph nodes removed including the SN. 2/31 were affected.
I am 33 years old with 2 girls, I’m finding it hard this time so many restrictions.
I have my ct planning next week and radiotherapy due to start end of month.
By having all removed let’s hope it does the job.