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What are the risks of lymphoedema?

14 REPLIES 14
Guest user
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Re: What are the risks of lymphoedema?

Hi Lucypickle,

Sorry I didn't see your post sooner - I had my op on the 12th.

The whole point about this new way of thinking is that there COULD be cancer in the other lymph nodes but that survival rates and recurrence rates of the studies done are the same whether the ladies went for full clearance or not. In fact the studies show a 10-12% chance of a false negative (ie SNB clear but cancer present in other lymph nodes) but concludes that this doesn't affect survival or reccurance rates so axillary clearance isn't needed.

I went for the full clearance in the end as felt too much like a guinea pig even though the Marsden have done the op this way on hundreds of patients and believe other hospitals will offer it too once they get the technology to test the lymph nodes there and then.

If anyone else has been offered this procedure and would like toread copies of the studies, PM me and I'll forward them to you. I'll also let you know the results of my clearance when I get them.

X

Guest user
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Re: What are the risks of lymphoedema?

Hi Sandytoes, I was having exactly the same dilemma. I had just read some research that compared just having SLNB vs SLNB then full axillary clearance when people had positive lypmh nodes, all the people in the study then had chemo and radio. There seemed to be no difference in survival or disease free years between the groups so the authors concluded that full axillary clearance may not be necessary in future management. I too wanted to avoid the possibility of developing lymphoedema as my job is very physical and I was worried it may stop me from working. I then talked to my BCN who made a very good point: if you don't remove the tissue that potentially could have micro mets in it, which aren't detectable unless taken out and examined, the cells are still there and may not be killed by chemo. Then you have the potential to develop cancer in your armpit later on down the line which is much more difficult to treat. If you have the full clearance you know that the tissue is gone along with any micro mets and there is no possibility of cancer in that area. To me that's peace of mind that i wouldn't have if i didn't have the full clearance, i would always be fretting what if there are still cancer cells still in there. Good luck with what you decide.

supertrouper
Member

Re: What are the risks of lymphoedema?

Hi Sandytoes

I had a SNB before I started chemo - out of the 5 nodes they removed cancer was in all of them. They removed the first layer - and my understanding is that there can be 5 layers. The sentinel layer being the first to be the first to show the cancer if it has started to move. If I was offered a second smaller operation to test the next layer rather than go for a full clearance, I would go for that. Where would you stop cutting in the hope that you got all the cancer?

I have never (yet) been offered any choices in my treatments - if I was I think I would turn it back on the person who offered it to me and ask "if it was your mother or your sister (presuming they care!) what would you advise them"

Good luck for your operation this week - I have a meeting with my smiley breast surgeon on Wednesday.

Guest user
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Re: What are the risks of lymphoedema?

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Guest user
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Re: What are the risks of lymphoedema?

Elinda - she's sent me studies and reports showing that ladies who were node-positive prior to neoadjvant chemo who had SNB following chemo with no clearance if the chemo had killed the cancer in the SNB lymph nodes had the same number of recurrences and survival rates as those who had full clearance. So the assumption is that if your lymph nodes have a full clinical response to the chemo they don't need to be removed.

I guess what's making me uncertain is that it's not common practice in the UK yet so I'm on the cusp of that and I guess I was hoping lots of other ladies on the forum would have piped up saying they'd been offered the same thing and gone ahead with it! I'm uncertain as I feel like I'm the only one (not the case as other women have gone down this line at the Marsden). Also - as it's all relatively new - the largest study (based on 871 women) has followed them for just over 6 years. If it had been longer, again, I might have felt more comfortable with it.

Sandra - I do agree with you, but the whole purpose of these studies is to improve women's quality of life and limit the number of unecessary clearances and therefore reduce the number of cases of lymphoedema. Similar to when they made the move from unecessary mastectomies to lumpectomies and unecessary axillary clearances to SNB for adjuvant ladies when that was introduced. Apparently this is already common practice in some of the leading cancer hospitals in America, but just being adopted over here in the hospitals that have the OSNA technology to test the lymph nodes during the operation.

I have to make my mind up today though and am leaning towards the full clearance to give me peace of mind - but am worried that my decision is based on fear rather than understanding the full facts.

Guest user
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Re: What are the risks of lymphoedema?

Hi there, if it was me I wouldn't base any treatment plan around the risk of lymphoedema. The huge problem about lymphoedema is the medical profession just don't know enough about it. Everyone has a different number of lymph nodes,I think from around 8 to over 20. So it depends on how many you have in the first place as to how your system will cope to being compromised. I only has a SNB with 4 nodes out yet I still developed lymphoedema after doing absolutely everthing I could to avoid it. However, I did have a seroma which for some reason puts you more at risk. I think some people are unfortunately pre disposed to this condition and it is luck of the draw.
For me if cancer had been found in my nodes I would have def had the rest out,just to make sure and just hope I would be one of the lucky ones re lymphoedema. Yes it is a pain to have this condition but I would rather be managing it than having to cope with another bout of cancer treatment. Good luck with your op .

elinda45
Member

Re: What are the risks of lymphoedema?

I think Sandytoes that I wouldn't be asking that question. I would be looking at the risks or not of SNB as opposed to full clearance.
No-one wants lymphodema but if its the difference between stopping spread or not, then it's the price most of us are willing to pay.

If you're surgeon is a pioneer of the SNB then she should have a good idea what she's talking about. Can you put your finger on what it is is that's making you uncertain after what she's said and the research she's sent you?

I suppose what I would want to know in your position is how the fact that you've had positive nodes affects all this. Do you know if they thought it was quite a number? Does it mean there is greater risk that the sentinal nodes could be clear but others further up might not be or is it that activity would definitely show up in sentinal nodes if it were active further up?

Elinda x

Guest user
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Re: What are the risks of lymphoedema?

Thank you Elinda,

Have spent this morning chatting to my breast care nurses and the helpline. Still haven't made up my mind...

Just in case anyone else stumbles across this thread looking for answers, the general feeling according to BCC breast care nurses and my oncologist and breast care nurses (and Gill's consultant) is as follows:

1) SNB only - 10-12%
2) Full axillary clearance 25-30%
3) SNB followed by radiotherapy to the lymph nodes 25-30%

x

elinda45
Member

Re: What are the risks of lymphoedema?

Hi there

It is very difficult when you get conflicting views to make a decision. Why not use the 'ask the nurse' e-mail facility on the BCC website?

I had 9/17 lymph nodes involved. I had chemo first and I was told there was no active cancer showing in the lymph nodes after that (via a scan with dye). However, my Onc said it wasn't possible to tell from that if they were completely inactive.
After discussing what level of clearance they would do, my surgeon said probably 2 levels but he'd make a decision during surgery. In the end he did a full axillary clearance.
Now that may be because they didn't do SNBs at my hospital, it's only a small place or it may have been due to other factors.

I think perhaps you need to talk this through with the surgeon again. I expect if you're like me you're worried about being a nuisance but it is a big decision and what you really need to be sure about is that it won't give you any percentage higher risk of recurrance or reduce by any percentage survival.

I have subsequently developed mild lymphodema which I was initially very upset about. Now I'm more used to it and I can't feel bitter about it because I'm completely sure in my mind that the surgeon did exactly what he thought was best. He usually of the view that less is more when it comes to surgery so I know he wouldn't have done what wasn't necessary.

I think whatever you decide you need to feel confident you're opting for the best possible thing for you as an individual. A clear rationale from the surgeon/Onc is the way forward.

take care, Elinda x

gill13
Member

Re: What are the risks of lymphoedema?

i had full clearance last week, my consultant told me approx 30% of patients could suffer from lymphoedema, i had 8/13 affected, so
i do still have to go for further tests, ct scan etc, due to the number of nodes affected
they won't take any chances with you, but sometimes its easier when the choice is taken out of your hands
good luck

Guest user
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Re: What are the risks of lymphoedema?

Thanks!!

I had chemo first and have been offered SNB following chemo (even though my nodes were positive prior to chemo). My surgeon has sent me lots and lots of studies on this and seems to think this will be common practice in a few years (she was one of the first to do SNB in the UK). Obviously, if there is still cancer alive in the lymph nodes they will do a full clearance. If there aren't, they'll leave the rest in. Or I can just ask for a full clearance - but all of the studies that I've read report the same recurrance and survival stats for those who had full clearance or SNB - the biggest being a study of 871 neoadjuvant ladies.

So - my gut feeling (which is driven by fear) is TAKE THEM ALL OUT! But then there's part of me thinking I should listen to the professionals! (My oncologist, surgeon and breast care nurse are all for this). And keep thinking that there was a time when women went from ALL having mastectomies to some having lumpectomies - and that must have been quite daunting for those women - with everyone thinking you had to have the whole breast removed to increase your survival. And ditto with going from full axillary clearance to SNBs.

So - I'm trying to make a more informed decision - but can't find the info!!

However, still leaning towards the full clearance thinking that I would much rather be sat here in a few years with lymphoedema than secondaries...

Thanks for your replies.

GIJaneH
Member

Re: What are the risks of lymphoedema?

They found that 10/18 of my nodes were affected. Wouldn't have known any other way and I'm glad they're out. I have mild lymph but I'm alive.. I took my surgeon's advice. What advice are you getting? Let us know what you decide.... Jane

Guest user
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Re: What are the risks of lymphoedema?

Hi Sandytoes
I had full node clearance as part of my treatment 5years ago. I now have lymphodema. In the olden days we all had full clearance because they thought it was better to take all rather than go back in.There wasn,t anything in any of them. In a way we were lucky we didn't need to choose. But to be perfectly honest it is in my opinion a no brainer. Having the node clearance I understand significantly reduces risk of reoccurance. You are worrying about an inconvienience, an irritation, a pain in the a'@@e.
Good luck.
Chinook
PS At the time of surgery I'd never heard of lymphadema.

topsymo
Member

Re: What are the risks of lymphoedema?

Hi Sandy - I'm absolutely not an expert on this but I am rather surprised that your onc., your surgeon and your BCN have all actually given you % figures- even if they are widely differing.

I thought no-one knew enough about lymphoedema to make any kind of accurate prediction- I understood that whether you got it or not was really pretty random.

Some people are 'lucky' and escape (although I understand it can occur many years after surgery) ...... but other people develop it pretty soon after surgery, seemingly having had just the same op etc

I had SNB, full (level 3 clearance) chemo and rads. - and I have had no probs at all. i really think it is more important to have the full clearance rather than worry overmuch re the possibility of lymphoedema.

Guest user
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What are the risks of lymphoedema?

Hello,

I have to make a decision regarding my surgery by tomorrow morning and am struggling as my oncologist and surgeon and breast care nurses have all told me different information and keep pulling up conflicting info on google too.

Does anyone know what the risks of lymphoedema are after:

1) SNB only
2) Full axillary clearance
3) SNB followed by radiotherapy to the lymph nodes

I've been told such different figures. My surgeon said full axillary clearance leads to 33% of women getting lymphoedema but my oncologist says 10%.

Have to weigh up whether I am going to have a full clearance following neoadjuvant chemo, knowing I had positive nodes prior to chemo. The main benefits of not having a full clearance being a lower risk of lymphodema - but I'm just trying to work out what the difference is.

Thank you for your help.

x