lymph node removal
lymph node removal Hello
I had a lump appear in march that grew rather quickly but have had chemotherapy and it has now considerably reduced so that i can now have a lumpectomy rather than a mastectomy which is good news.
However my surgeon tells me that the lymph nodes will have to be completely taken out as this is standard practice based on the size of the tumour although there is no evidence that the cancer started there.
I have been reading that In USA only the sentinel nodes are taken out and that has considerably reduced instances of lymphoedema.
Has anyone just received sentinel node removal in this country and if so was this based on the size of the tumour ? Also was any tests done beforehand to check whether the cancer had started in the lymph glands as i have read that dye can be injected to indicate this unless i am mistaken.
I am quite worried about lymphoedema so any feedback would be appreciated as i have been told that 1 in 4 women develop this after complete removal.
Hi tulip13
My original tumour was over 3cm. I looked into this as my hospital does both SNB and full clearance and my surgeon & my onc were recommended the full clearance. After a lot of research I found that the ‘success’ rate an the ‘accuracy’ rate for SNB was much reduced after the tumour was above 2cm. There is a great leap in false negatives when the tumour is above 2cm. It is the ORIGINAL tumour size you need to look at.
Like you I also did not want the risk of lymphodoema, but decided that I’d sooner risk that than having the cancer spread and it not being caught. i also did not want and SNB and then have to undergo a second operation. If you had a sasmaller tumour to start with, then I’d look in to SNB, if not then remember the lymphodoema rate is small - and you can reduce this risk just by being sensible.
Good luck with whatever you decide
tigerlily
I too was terrified of lymphoedema having had 9 nodes out. In fact I showed no signs until I got a bit in hand 6 yrs ago from economising on CH. It’s stayed the same. But do recommend daily massage upper arm with or without moisturiser and keep hands warm! Later had 13 nodes out on other side and have to massage a little more. Not too alarming? dilly
CH?! Sorry if I appear thick Dilly, but what do you mean by economising on CH?
Take care all
Linda
Lymphoedema. I had ANC and also radiotheraphy on my underarm which increases still the risk of lymphoedema. I let them throw what they could at me as long as they thought it would improve my chanches.It’s two years since my treatment finished and no sign of lymphoedema, but I do have to be careful with cuts and grazes as they take a lot longer to clear up.I’m an avid gardener and often carrying heavy loads. it hasn’t slowed me down a bit.
Am also interested to know what ‘CH’ is.
(keeping this short as am trying to type with no errors this time!!)
GLAD YOU ASKED THAT Tigerlilly, I thought I was really being thick!
Take care all
Linda
Sentinal Node Removal New user Kim has posted the following
sentinel node removal
posted on 9.09.06
11:14 am
I had sentinel node removal, 13 lymphs removed (2 were infected) - I’m not sure but I don’t think that it has anything to do with the size of the lump. It was thought, incorrectly in fact, that my tumour was about 1cm big - it actually turned out to be 3.1cm. As far as I can understand - the proceedure is more effective at highlighting suspect nodes.
The blue dye takes ages to subside by the way. I had my nodes removed in April and I still have a blue mark on my boob, although it is fading now.
Do you know why they are threatening to remove all your nodes?
Regards
Kim
snb i had a snb and lumpectomy 3 weeks ago my tumour was just under 1cm i have just had a clearance on the 6th and awaiting the results of this then will follow with chemo radio then tamoxifan i did not have the choice but i would rather of had just 1 op good luck let us know what you decide
margo
Lymph Node Removal Hi Tulip13
I had L mastectomy with immediate reconstruction in May. I was offered the choice of clearance or sentinel node removal using ‘blue dye’ to hilight the sentinel nodes. I opted for the sentinel nodes only in the hope that the cancer had not spread. The ultrasound had showed my tumour to be under 2cms but my surgeon did not say this was a deciding factor.
After surgery, the only evidence of the blue dye was blue/green urine, which amused many of the staff! When I saw my surgeon again for results, he told me the tumour was actually 2.7cm and the cancer had spread to the 4 sentinel nodes he had removed. Therefore I have another choice - surgical removal of the rest of the lymph nodes or radiotherapy to my underarm. However he and my Oncologist have recommended surgical removal. As I am having chemo, I do not have to make that choice until the end of the year! I shall also be having radiotherapy so I do not know which will come first!
My breast care nurse advised me that even if some nodes are removed, I should always have to take more care of my L arm - no heavy lifting, no blood tests from that arm, no injections, no chemo in that arm - not even blood pressure taken from that arm. I have a numb area now which I expect will be worse after complete clearance, so I do massage my arm with moisturer every day. We just have to take care of every bit of us! Hope this helps.
Pam x
nodes Hi,
Yes , there is a test with dye which is done the day before your op
Mine showed 3 nodes involved my lump was 14mm very small
but yet when they operated they found much more involved.
I had to have a second op to remove 23 nodes and 15 were involved
I was terrified of lymphoedema too but thankfully it never happened.
Am always on the lookout for it nearly at times measuring my arms!!
My arm was very painful after surgery and chemo and rad and had physio for 18 months. I still exercise daily and and am fine on that score.
Is the CH central heating perhaps as poster does talk about keeping hands warm ?. ( PUZZLED )
Good Luck
Kieran
My understanding Hi tulip13
Sentinel node biospy is not suitable for everyone. If you have chemo before surgery it is usually because the lump is larger and/or aggressive and therefore may have spread to the nodes. Sometimes there is clinical evidence taht this is the case. The chemo may shrink the lump and any cancer in the nodes, so all the nodes are removed to be sure of getting all the cancer. Breast cancer doesn’t start in the lymph nodes: it starts in the breast and then may spread to lymph nodes and/or to distant organs (if distant organs then that’s metasteses…secondaries).
SNB is an appropriate procedure if doctors think cancer probably hasn’t spread. If the SNB reveals any spread then the rest of the nodes are removed (clearance).
So my understanding is that your doctors are correct to remove all your nodes. This happened to me and I haven’t (touch wood) had lymphodoema and op was well over 2 years ago.
If in doubt call one of the breatst cancer helplines so you can have confidence in the treatment being suggested.
best wishes
Jane
Hello tulip13,
I had chemo for 6 months prior to surgery in order to shrink the tumour.
The surgeon said that he would do an SNB at the same time as the lumpectomy and that would tell him if the remainder of the nodes were clear.
However 3 weeks after surgery and I returned for the results -to be told that the cancer was in the sentinel nodes and therefore I would have to have a 2nd op to have the lymph nodes removed. My original tumour was fairly large.
I was panicked about lymphoedema- but well I had to have the op. So we just have to get on with it.
My advice is to massage your arm very well and ensure that you do the exercises regularly and think positively.
Good luck to you
x
Lambkin
sentinel nodes I had a sentinel node removal back in april. I think they only do it for tumors under about 2 cms … it’s a more tricky process as they inject the lump with a blue radioactive dye then you have to wait for an hour so they can trace the path of the dye to find the node that leads directly from the lump so that they can just remove one or two and minimise the damage… i had 2 nodes removed but one of them was positive so i then had to go back and have another operation to have them all out …even though the rest all turned out to be clear, so in the end it probably would have been better to just have them all out in the first op!
don’t worry too much about lymphodema - not that many people get it and if you keep doing the physiotherapy it should all be ok
clearance hi tulip,
i to aws diagnosed in march and had chemo first,
my tumour got up to 4cm before it shrank and could not be found to measure on ultrasound. i asked about SNB but was told that following chemo it dosn’t always show correctly and the only real way of making sure was to hav a clearance.
ihad my op 2 weeks ago and got my results back on wed. the tumour was 12mm when removed and no nodes were involed. i am annoyed that i hav had the nodes removed when they were fine but at least i hav the peace of mind that there can never be any spread!
there is no sign of lymphoedema even thou my drain was stil collecting 40-50mls a day when removed.
i hope this helps
emma
i am the same as you Emma - advised to have all nodes removed due to chemo. I really looked into this before I had it done because I so didn’t want them all taken, but found that it was the best thing for my tumour & treatment. none of my lymph nodes were affected, and I felt really miffed that i’d had them taken out for nothing! The majority of us with all nodes taken do not suffer from Lymphodoema at all. (forget percentages - brain woolly - but I think that 85% do NOT get lymphodoema - [or is that 75%?]). My drain was collecting almost 90ml per day when removed.
Thanks for replies Thanks for all replies - it really helped me thru a bad patch.
Just to let you know had operation last monday and my tumour had shrunk to 2.5 cm and i had 4 lymph nodes removed rather than a clearance. Awaiting result . Was out of hospital day after and so far, fingers crossed have had no swelling and the scar is healing quite nicely.
I’ve done a little reading since and it seems that sentinel node removal is commonplace in America and has cut down on instances of lymphoedema.
Thanks again
Tulip
sentinel node biopsy I had my axilla cleared unnecessarily in March 05 and developed lymphoedema in my breast and thne in my arm and hand. It is not something you would want and I would strongly recommend that you look into sentinel node biopsy as more and more surgeons are getting the training now. I recently had a prophylactic mastectomy and as significant risk or another tumour but the thing that really scared me was the thought of having to have my lymph nodes revmoved and having 2 arms with lymphoedema. If you absolutely have to have nodes removed then there is no option but if you can avoid it then think carefully. Some of us are just unlucky and regardless of whata we do to avoid it, get lymphoedema and I am fairly cheesed off that my nodes were clear and did not have to be removed. I did ask re SNB but was told it was too new a technique and not done, only to discover that another local hosp had the expertise…c’est la vie.
Don’t want to scare anyone but I would avoid anything you dont’ absolutely have to have.
best wishes
Buff
No choice I had a mastectomy and sentinel lymph nodes removed in June. Was told post-op that the tumour was much larger and more aggressive than first thought (in excess of 3 cm) and would therefore need lymph nodes removed as it may have drained through other than seninel lymph nodes. I have been having chemo and will have the operation when this has finished.
I was not really given a choice as to whether I wanted the lymph nodes removed or not. I was simply told that this gave me a better chance of survival but as the sentinel lymph nodes were clear, I am still wondering if it is really necessary. But like tigerlily, feel it is better to have the operation than risk the cancer spreading.
However, will hope for (demand?) opportunity to discuss this fully with surgeon before final decision.
Meg