Hi all.
Diagnosed in Jan, grade 3, triple neg, 1.7cms. Had sentinel node biopsy at the end of Feb, and the results were less than conclusive: 3 nodes removed, 1 possibly compromised, but was told that could be a “false positive”.
On the strength of this, full axillary clearance advised with mast after (what seems to me) epic chemo: 6x EC followed by 4 x Tax.
Very happy with clinical care generally. Obviously, if there’s any doubt, it should be treated as positive, I can understand that. But it seems a fairly harsh solution and as an active kind of girl, possible lymphodoema somewhere down the line is a bit of a concern.
Anybody else had the “false positive” experience? Or full axillary clearance? What was it like?
Hi Lanterna,
I had full exillary clearance early March. However, my snb was 2 out of 5 positive and in total 4 out of 13 were positive, so it had to be done in my case. It’s not the most pleasant experience, but is pretty much like the snb itself, apart from the drain - which you should hopefully only have for 24 hours. The contents look like a strawberry smoothie - something I’ve not been able to look at since!
The problem I keep experiencing with the clearance is that DOCTORS keep wanting to use that arm for bloods, infusions etc. I was warned (to avoid risk of lyphodoema) not to have the skin pierced AT ALL. It should only be done in life or death situations. However, doctors look at the juicy veins in that arms and start to salivate, particularly since the veins in the other arm are now shot. You must be prepared to stand your ground on that front. Eventually your system will develop a means of coping without the lymph nodes, but that’s at least a year down the line, and you should still be very cautious. You can’t even have a back massage as that sends the toxins to your lymphatic system - which is compromised!
As a sheep farmer, my left hand is constantly under threat, but I have developed means of coping with it. I now jag the sheep with my left hand holding the syringe and inject my right hand as well as the sheep!!! You just have to be aware of potential problems and find ways around them.
All the best to you - you’ll be fine
Sue xx
Sue, I do so agree!
Trying to convince doctors nurses, etc to leave compromised arms alone is such a struggle! I have lymphoedema in both arms, but my hands (so far, touch wood) are unaffected. Such is the ignorance among so many medical people that they often decide my hands are a suitable target instead! They are supposed to use my feet, neck or groin for blood, IV etc, and my thigh for BP. Great fun.
Fortunately I’m the bolshie kind when it comes to things like this and I’ll stand my ground ad infinitum. The worry is, however that when you are unconscious for any reason and have no say in what they are doing to you, they will, as you say, home in on those ‘juicy veins’!
Bahons…My breast cancer care nurse suggested I put a card in my purse threatening legal action if they pierce the skin on the affected side. So, if you are unconscious and they are looking for ID etc in your purse, they’ll find a wee note saying when you had treatment and that the skin is not to be pierced unless they can prove it’s a life or death situation. You might like to think about that as a way of trying to protect yourself.
It’s scary how ignorant the docs are - that we actually know more than they do despite their years of training!
Hi there Sue - I LOVE the bit about a card that threatens legal action!
I have actually got an official card that tells people not to touch my arms unless I’m at death’s door and I also have lymphoedema armbands (like hospital ID bracelets), too. I got them from the Lymphoedema Support Network and they do help - up to a point. This is where your remark about ignorance is spot on. A lot of health professionals have been told that lymphoedema isn’t serious and that they can just plough on regardless and this is where, in my experience, the arguments start! It requires a lot more time, thought and effort to work around a dodgy arm and they very often aren’t forthcoming. Don’t get me started…!
hi lanterna
i have had full auxillary clearance and masc, and whilst it can be a little painful after having lymph nodes removed, my lymphadema doesnt seem to bother me (yet)
my arm does feel numb underneath, but nothing bad, i seem to have more swelling near the shoulder, because they had to go deep into the muscle has that had been affected, so i look a bit like the michelin man undressed. but it really does not bother me ( i will do anything to beat this!)
having the breast removed has never been painful so thats good i suppose.
my nurses at the chemo ward are understanding so far, about which arm to put the canula into,. but thats perhaps because ive only had 1 and my veins are still good at the moment. try not to worry, because im sure like me, you have no option but to put your trust in the medical staff, and on the whole they do seem very compassionate individuals. take care enjoy every moment, and try to stay in the present.
I have posted this for new user Babs,
Jo, Facilitator
I had axillary clearance 4 weeks ago more of an inconvenience than pain. Did have to have it drained six times though.I had three of five nodes positive.
Hi Lanterna, I’ve had level I & level II axillary clearance - not quite full clearance - I believe that would amount to also removing level III lymph nodes although I might be wrong - but which did amount to at least 17 lymph nodes being removed. I had a mastectomy and an immediate reconstruction at the same time so I had more than one drain at the same time and one of which was not removed until a week after the operation. The contents were not very pleasant to look at as you might expect but my greatest problem was remembering that I had a drain(s) attached in the first place.
As for the risk of lymphodoema, I agree with both Sue and Bahons - you do need to insist that your compromised arm be avoided and only be used in exceptional circumstances: it is difficult - especially when you’re not feeling particularly strong and up for a fight - but if only for your own peace of mind I would say it is definitely worthwhile - I was relieved, at least, anyway, when I managed to arrange for my chemo to be postponed for a day so that they didn’t have to use my other arm (a long story but my blood sample was mislaid, I had to give another sample the next day - on the proposed day of chemo - only to be told that they couldn’t administer the chemo in my usual arm because a vein had already been punctured and that they would therefore have to use my other arm). I would imagine that you will also be given a series of exercises to do each day, which I believe also helps to get the lymph circulating.
Am I right in thinking that if you are triple negative you will neither be having herceptin nor tamoxifen (or its equivalent) after chemo (and possibly rads)?
Most of all, as ‘everydaymatters’ says, try to stay in the present.
All the best
Naz
Thanks, everybody. All useful stuff, and cheers for sharing your experiences.
I still have a problem with the ‘false negative’, though. Do I really have to tiptoe round my right arm for the rest of my natural? I’m gazing at a deep cut on my right index finger as I type… just part of life’s hurly-burly, nothing to worry about. At the moment.
Would be gutted to have to reduce activity levels 'cause of an inconclusive path report. And why would it be inconclusive? They take out 3 lymph nodes, chop 'em up and work out whether the demon is trying to spread or not. To my mind, that’s a pretty important question. And one that hasn’t been answered properly.
Guess the lucky oncologist is due for a grilling. But hey, that’s what they get paid for!
And hey, Naz, cheers. Yes, trip neg, no hormone receptors and no need for rads if I go down the mastectomy route. My preferred option at the moment, but let’s see.
Oh, and I’m in the present all right. Sharp as a razor and living every moment…when not snoozing, that is! But treatment options are something to gather knowledge and make active decisions about. And that’s what I’m trying to do at the moment.
Thanks again, everybody. Appreciated!
L xxx
Hi Lanterna
If you have a full axillary clearance it does mean taking more care (ie no IV, BP, etc as discussed above - I’m sure you’ll be given a leaflet) of that arm for the rest of your life. Some (most, in fact) people do not develop lymphoedema and why some do and some don’t is a long way from being fully understood although some risk factors have been identified.
I’m sure other people here who don’t have it will be able to tell you about their activity levels and if/how they have changed.
Best wishes!
S
I had node sampling - 7 nodes taken - and all along the line I have been told absolutely no bloods/injections/bp etc to be done on that arm ever. Also advised gardening gloves must be worn (not a problem as I live in a flat), rubber gloves for washing up, manicure should push back cuticles rather than cut. Any cut to hand/arm should be cleaned with alcohol wipes and clean dressing applied. Further advised carrying anything heavy on that side etc etc as my affected side is my right and I am right handed it can be a bit of a problem but nothing that I have not been able to work around.
Did cause a little bit of an upheaval in the office when I had to get them to turn my desk 180 degrees - all my files were at my right and I was constantly reaching out and up with my right arm … now I face the opposite direction and everything is on my left.
Hi Lanterna,
Not sure whether this will help but I was dx in May 2006 with a 1.7 cm tumour, Grade 3, ER-/PR+/HER-2+++ and with 2 microscopic cell clusters (micromets) in the sentinel node measuring in total less than a millimetre. My treatment was lumpectomy, chemo, radiotherapy and then herceptin. On dx I was told by my surgeon that if he found any trace of cancer in the lymph nodes then they would be all taken out in a second surgery. This never happened and to be honest I didn’t question it at the time because I think I was in such a state of shock. It is only now after treatment has finished (with the exception of tamoxifen) that I wonder why he didn’t do a full clearance - however, I did overhear some of the oncology doctors talking at the hospital (which is a centre of excellence) and through earwigging discovered that the protocol in some hospitals for people with cancer in 1 node is not to do a full clearance but to have radiotherapy instead. It seems to vary so much from hospital to hospital. Is there a reason you are having a mastectomy rather than a lumpectomy? So far I haven’t had any problems with my arm except on my very first chemo when they had to use my affected arm and yet for the rest of my chemo and 18 herceptins they were able to use the unaffected arm, but as I say don’t have any problems at the moment. Love xxx
Hi
I really appreciate your ‘stories’ as I am having full axillary clearance June 9. Will let you know how i get on.
I was dx C’mas eve with further breast cancer in the nodes and secondary on the spine. Had mastectomy & reconstruction 3 years ago.
Have had chemo FEC x6 and this week is a relief and feeling a bit more ‘normal’.
So cancer escaped somehow - hope node clearance sorts it. Was told about Rads but nothing so far…
Thanks
I had 1 of 3 nodes positive at SLN biopsy and 1 of a further 24 positive when they did axillary clearance during the mastectomy (so 2/27 in total). I’m having chemo and will have rads to follow, then tamoxifen as ER+, HER2-, PR not tested as I was told a positive ER test means they don’t bother with PR separately. However, I’ve never been told what ‘level’ the axillary clearance was - should I try to find out?
I would have thought a clearance would mean all three levels.
Hope you get good, clear answers on what “inconclusive” means. I had sentinel nodes removed (two). Both came back no metastasis but path report says “two widely separate foci of carcinoma are present in one of the lymph nodes. Each focus is only 150 microns and therefore does not correspond with metastasis”. So it was there, but not enough to count!!! Anyway, surgeon said it was regarded as negative and I didn’t need further surgery. Sure does get confusing!! Good luck and let us know the outcome. Sarah.