Hi, I am 49 fit ride horses, swim, cycle drive a coach for a living etc etc. I need the use of my right arm. I have had surgery had the lump removed and have been told that I have one node after the SNB with 2 mm of cancer in it so must have auxillary clearance op booked in for 20/4/11. Then read about side effects, I am devasted. Spoke to friend who rides and has had breast cancer and lympodema says very painfull can’t ride with it etc. The found on internet research in America on over 800 women called z0011 same sort of cancers stge as me half had just SNB chemo and radio theraphy, other half had auxillary clearance chemo and radio theraphy. After 6.4 years survival/cancer reacurrance was the same!However those who had had auxillary clearance had 70% more bad side effects. Conclusion more radical surgery did not improve life expectantcy just increased side effects. Any bodies thoughts or real life experiences welcome? PLEASE
I had all nodes removed (15/20 affected so not much choice!). This was 2 years ago. I’m pretty active - drive a car competitively, swim, but am careful about weight carrying, swapped my watch to other wrist, and see lymphodema nurse 6 monthly so anything is caught early. Touch wood, 2 years down the line I’m fine in thaht respect.
Personaly even if I’d just had 1 node affected I’d have had them all out - lymph nodes seems to me just common sense wise as being the route most likely for transmission and anything I could do to stop a recurrence I’d do.
Since I discovered the US use DCIS in their survival stats I’m a bit dubious about any of them, and I’d have em out if I were you - but I’m not and when it comes down to it it’s your decision. You may have them out, no lymphodemia and never think about it again, or you may have tehm out and suffer as your friend does - lots of permutations - this is just my pennyworth
Nina
When I was first diagnosed four years ago I had a WLE and I was offered a sentinel node biopsy. I read quite a lot about this and found that SNB is considered to have an accuracy rate of only 93% - (ninety three percent).
I therefore asked for axillary clearance and the surgeon found two positive nodes. He said afterwards that he was very pleased that I had decided on axillary clearance because - to quote him’ ‘if I had missed those nodes when doing an SNB …’ !!!
I have lymphoedema of the breast but - so far - not in my arm. I use my arm quite a lot although if I’m not careful I do sometimes get pain in that arm - when for example I’ve lifted heavy things the day before.
For me it was far more important to have axillary clearance and I just wouldn’t have felt confident about a SNB.
I understand your concerns Jaspurr, but in your case I think you would be wise to follow your doctor’s advice - just in case there are any more positive nodes left. Even if they don’t find any more positive ones, you will at least have the peace of mind of knowing that they’re definitely not there.
Also you don’t know that you will necessarily get lymphoedema. There is lots of advice on this site about how to prevent it. I was also shown exercises by the physio in hospital after my ANC and I did these daily for several months after surgery.
Good luck with your decision. Anthi x
I’m in the same position so all advice welcome.
x
Jaspurr i wrote to my surgeon with that information and he said if the nodes are 2mm or more its full node removal he wouldnt listen. Im having mine done on the 9th May and have told him if i get severe lymphodema to amputate my arm as id be better of with a false arm than a useless arm. He also advised no rads to underarm to help prevent lymphodema.
Hi Jaspurr
Your 2 mm positive node is right on the borderline of being either a micromet (less than 2mm) or a macromet (more than 2 mm). Have they told you how they are classifying this node whether micromet or macromet? It can make a difference to surgical and chemo options (if chemo is needed).
Initially my surgeon said if there was any trace of cancer found at SNB he would perform an ANC. When the results came back 2 micromets were found in my sentinel node. However, my surgeon decided against ANC and instead I had radiotherapy to my armpit.
However, my onc said some would treat this as node negative but he was going to err on the side of caution and treat me as node positive - this also meant that I could have taxotere as part of my chemo as tax is normally only given if you are node positive.
Things may have changed since then as I was dx in May 2006. I don’t have any problems with my arm, had a bit of tennis elbow when I took up tennis again but other than that no real problems. Am careful though about not lifting anything too heavy or carrying heavy shopping bags in my right hand.
Not sure if this will help - there are so many twists and turns with cancer treatments depending on which hospital you are treated at.
Good luck with your decision. Take care. Love xxx
I had the SNB and they found 2 nodes infected 2mm but instead of a full clearance the surgeon just took out a couple more with the mastectomy, so 9 taken out in total. I really didn’t want any lymphedema as my family are all in aus and I couldn’t do without an annual trip for sunshine!
Not sure about any stats but I understand that the SNB was one of those eureka moments in breast cancer treatment that meant only the most severe cases required the most severe treatment of ANC. 93% is a pretty high success rate, that means 14 out of 15 cases are successful.
My onc has always said you have to weigh up the pros and cons of the treatment versus the side effects and choose…it really is up to you to decide with the help of your surgeon as he obviously knows what he’s doing.
Can you get a second opinion if you aren’t sure?
Sorry to rock the boat with a different opinion.
Cat xx
Hello You may like to look at this and print off and show your Drs. its your body and life. At the same time they are or should be , the experts. but my gut feeling is that sometimes hospitals are slow to change their treatment regimes in the light of new evidence - hence the postcode lottery.
here is the reference - jama.ama-assn.org/content/305/6/569.abstract
this is the conclusion from that paper -" Conclusion Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival." But it does say these patients had T1 or T2 tumours - so small tumours that had not spread much.
The type of cancer and grade etc is really important in treatment plan, mine was Grade 1 and tubular , so should have been slow growing and I was advised against a full clearance (had 2 sentinel nodes positive but next 4 were clear), but strongly advised to have chemo and rads which I did. Good luck with your decision making. Do ask all you want to - of the Drs, and Breast Care Nurse and also phone BCC helpline, to help you decide what to do. Best Wishes.
I had isolated tumour cells in the sentinel node. The multi disciplinary team of 12 oncs and surgeons who run the BC dept at my hospital couldn’t agree on what I should have done. 6 said I should have full clearance. 6 said I shouldn’t.
In the end I had the clearance and it was agony - very hard surgery to recover from. I have not had many problems with lymphoedema but I know some women who have suffered terribly - it is truly life changing.
Tough decision.
awe great so its a s**t operation to recover from as well, has anyone any good tales to tell about lymph node clearance i was expecting to be out with the dogs in ten days. Suspect i still will be anyway pain or not.
Hi Hatty I had SNB and axillary lymph node dissection on 12th January. The scar is a bit lumpy which the physio has shown me how to massage and says will probably take a year to go. It can get a little sore at times with clothes chaffing and if I do too much and I have to say that my underarm and part of my arm (underneath) is numb. I have experienced very mild swelling to arm and hand and it goes get painful at times, so I do see a physio who is also experienced in lymphodema via my hospital. I have been doing my exercies religiously since day one and I think these certainly help. It took a while to get most of the movement back. I also experienced cording where your arm feels really tight and again my physio massaged this out for me and I do it but not as well as her. Unfortunately there aren’t very many lymphodema specialists about by the sound of it. I am fortunate enough to be having my treatment privately and physio comes in after I have my chemo to save me having to go back again. I think the answer is to try and keep the lymphodema under control, and I am really hoping that I will not need a stocking but I also understand that this lymph… can appear after years of operation. Good luck. Adi
Hi Hatty just a quickie, i had WLE and ANC in January only one node turned out to be infected and we knew about that one from my core biopsy. I came home with a drain in after one night and healed really well from the op, i had really good movement after about seven days and went back to work. It was a bit bruised and is still numb but it really was not too bad at all. Now i have full movement in my arm, thought i had a bit of lymphodema last week went to the hospital and they think it is just some swelling after the op, gave me some massage to do and it works.
Best wishes Sal
I had a full clearance in 2005 at the same time as mx and have had no problems with lymphodema.
I show medium sized long coated dogs and was back in the ring after three weeks. It was painful for a few days but not unbearably so.
I have had no problems grooming and still lift them on and off the grooming table (I probably shouldn’t)
I’m also an artist and use my arm for hours each day, it sometimes aches which is when I rest it for a while.
I also go on a long haul flight each year and again I’ve had no problems.
Wishing you well
Gayle
I was told that the accuracy of snb increased to 98% when they used both the blue dye and the radioactive tracer together, a two pronged approach. Obviously, being me i stress about the 2% , as i fell foul of statistics by getting bc in the first place ( those odds at aged 36 were 0.05%). But i have to remember that the 2% isn’t that they’ve missed cancer in 2% of the cases, its that they missed the sentinel node in 2% of cases which may, or may not, have contained cancer. Still makes me feel sick thinking about it though, even though my sgn toldme there was just one big blue throbbing node he had to remove!
Hi everyone this is Jaspurr again, I have been to see a top breast cancer surgeon at Royal Marsden and boy I am so glad I did. He spent ages frantically looking through my notes and then told me that they say different things in different places! One says I have a macro amount in the node and one says a micro! Need to know how many M.M. exactly and then will know my notes are as clear as mud! He wasn’t impressed. He explained everything in detail and told me exactly what to do depending on getting the correct details in my notes. He actually said this is what I would do and he did not sit on the fence.
I feel so much better though worried that my notes don’t match but so relieved that another Doctor checked them. Not everyone benefits from auxillary clearance depends where your cancer is in your breast how many MM are in your nodes etc. etc so you should see a real expert if worried and unsure like me. I will now make a full informed choice that gives me the best chance of survival and quality of life, providing my local Hospital can find the correct notes!
Hi jaspurr, I too have had the SNB dilema this week I saw a well revereed prof in scotland who removed 2 sentinel nodes and 2 others, he found cancer in 2 SN’s and ‘micromets’ in one of the two others and said it was a pretty safe bet that that would be all, but never any guaruntees eh? I had ANC with my last surgery and have suffered with Lymphodeama, hence for me taking out what was nec, …I saw an onc in wales who disagreed and said bc could take a sneaky route and go a different route so that confused me??? any way it has identified the need for chemo and will have surgery after that ( another disagreement between the two) for me I have decided to err on the side of the man whoom I have been trated by and trusted for the last 14 years… what can we do eh? the onc told me here in wales that chemo first gives afalse reading as it kills the cells in the nodes ( forgive me but I thought that was the idea!) and if they are removed you don’t know of they would have been affected or not??? …confused I was!!! as I said i was recentluy told that if camcer was in the cells it would scar them and they would know???phew what a drama…xxxx
Hi Jaspur- I had WLE and SNB like yourself and was shocked when the SNB revealed one affected node and full clearance & chemo was then recommended instead of just rads.
I had level three (deep) clearance and no other nodes were found to be affected - but even though I was seriously fed-up about it all, I’m gad now that I did have the ''full works" . My BC was found to be Stage 3 and level 3 so I could not have lived with the knowledge that there would probably be further nodal spread and later, maybe metastases which I have to believe, the WLA and subsequent treatment have pre-empted.
I had a wound infection (after my 2nd lot of surgery in 3 weeks) but it soon healed. I was only in hospital 3 nights and the drain came out soon afterwards. The scar ain’t pretty, but it’s not in a visible place unless you always wear strappy or sleeveless tops.
I have full movement and can do everything I did before so although I still have numbness where the nodes were removed (3 years on) I have no other probs.
A close friend of mine had a bi-lateral mx with clearance and is now playing tennis & netball again (she’s a games teacher) She has also done a sponsored row down 20 miles of the River Avon!!
Hope this is encouraging for you- I know how I felt when the surgeon gave me MY SNB results( anger was the principle emotion I recall!)
I think my friend’s and my experience, post axillary clearance is more typical than the unlucky minority who go on to develop lymphoedema.
I did not really have any choice but full clearance as at SNB they found 7 of the 9 they removed to have cancer on full clearenance they found another 2. He managed to remove a total of 24 and went right up into my armpit. I also had radiotheropy under my armpit just in case there were any rogue ones he did not find.
For me it is was a no brainer - the risk of not having this done and subsequent spread to organs is far worse than lymphedemia. I am not trying to trivialise lymphedemia - I know it can be very debelitating but stage 4 cancer is far worse.
I have been lucky up to now - no signs of lymphedemia at all. I am very careful and follow all the tips and keep my arm covered do the exercies and don’t lift heavy weights etc.
I had my full clearance with my mastectomny and I stayed in overnight and out next day - had a drain for 5 days no real problems with either and very soon got full movement in my arm.
I too had to have ANC as at the recall after routine mammo showed a prob. The ultra sound showed an axillary lump and a biopsy was done. Unfortunately this was not a re active node as they expected but a macromet. So no SNB for me and WLE and ANC ( all 3 levels) after chemo ( had originally been told WLE and rads).Was in hosp overnight and home with drain in (almost a yr ago BH week-end end of May)Continue with exercises and taking general care of affected arm. As Saffronseed said best get the nodes out. I have had a routine appt with Lymphoedema nurse and have a f/up next month with her too.I don’t have lymphoedema but she sees everyone who has had an ANC. Good luck J