axillary lymph node clearance surgery really necessary??? I need help.

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I have diagnosed with breast cancer. they removed the toumor and took a sentinal node biopsy which one of them was positive. Now they want me to have an axillary lymph clearance to remove all. I am really afraid of the side effect expecially the lymphoedema, and I have heard that I have to be extra carefull for the rest of my life. I won’t be able to lie on my arm anymore. I am quite young and I woundering it is really necessary. is anybody had this surgery and could you tell me what happened with your arm. I have heard about studyes that to have only radiotherapy under my arm is as good as the surgery and reduce the side effect. Does anybody have experience one of the traitment.
I need to decide soon if I want to have this operation or not, but is is so hard to decide. 

Many thanks for your helps.

 

Virag

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Hi Virag, I had mx and full node clearance a year ago. I had 26 out of 27 positive with c so it was definitely necessary. So far so good. I did yoga throughout chemo and went back to swimming, combat and horse riding 6 months ago. I don’t lift with my bad arm and am careful about cuts (carry germoline with me at all times!). I sleep on it sometimes and it seems OK. I had radiotherapy but they didn’t do the axilla as lymphodema risk. Yes it’s a lifelong thing so it’s early days.

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Hi Dezdi,

 

I’m so sorry you are facing this at such a young age. I am much older than you are but I am also very afraid of the possible implications of node clearance. I have yet to have my surgery, but apparently they test the sentinel nodes during the op and, if there is a positive test on one node and you consented to clearance in advance, out they all come.

 

I have to write and type a great deal for my job and I enjoy painting and gardening in my spare time. Generally, I’m the sort to get stuck in with physical labour in the garden rather than get anyone else to do it. I’m really afraid that this is not going to be possible in the future.

 

I have been asked by my consultant whether I would enter into a trial whereby I could either have full clearance and radiotherapy, just radiotherapy, or nothing at all. It seems that there is a body of medical opinion which believes that clearance does not bring about a better survival rate. In the trial, it would be pot luck which I get. At the moment, my view is that I need to decide which one of these approaches I want to take rather than rely on the spin of the dice.

 

Have you had any success in researching this, because I have found precious little? I’m still looking, so if I find anything useful, I’ll let you know.

xx

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Hi again,

 

i have aver been doing more research. If you are interested, Google IBCSG 23-01. This was a research project which appears to show that there were no benefits to having lymph node clearance for someone in your position. (Although you haven’t said how many nodes were tested). In fact, the way I read it, it shows that the outcomes for women who didn’t go for lymph node clearance fared better. However, it is quite difficult to read, so you might want to discuss these results with your consultant.

 

It is also, my understanding that radiation to the underarm area can be as damaging to the nodes as clearance, but again you need to check with your consultant.

 

I am moving towards refusing surgery or radiation on the lymph nodes if there is not extensive damage to the nodes, but I’m going to keep looking and then have a full and frank conversation with my consultant.

 

good luck

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Hi ladies, I am also seriously considering refusing lymph clearance as I went into hospital yesterday to ask more questions of my surgeon - I was surprised at his response.  He was open and forthcoming regarding the dilemma that is being raised about the necessity to have axillary clearance - highlighting the fact that in the USA it is not “the norm”, and indeed there have been clinical trials that appear to indicate that the survival rates and the recurrence of breast cancer seem to be very similar between clearance/non-clearance (about .5%), the survival rate is high for both.  I am very practical - DIY, and I’m a qualified electrician so the thought of having to be so “protective” of my hand and arm and with the potential of limited functionality seems to be swapping a curable disease for a lifelong disability… I have spoken with other health professionals who on looking into this further were surprised at the findings, but this clearance is what has ben approved as the way forward by NICE.  The upshot is that, with a positive sentinel biopsy, my surgeon has said that should I elect not to have the clearance, it in no way affects the chemo or radio treatments that are most likely to be part of my treatment plan.  I would like to believe that the chemo is tailored to each persons’ cancer and should target all small metastases, even those already in the lymph.

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Hi, I have even told that at my initial ‘one stop’ clinic that I had 2 nodes involved, I also had a 3.5cm breast  tutor in my left breast which is grade  1 -  my oncologist suggested a mastectomy and full and ALND - however, due to my just having undergone surgery she decided to put me on letrozole for 3 months so I could recover from my surgery.  When I went back to see her after 3 months the ultra sound had shown it had reduced in size by 33%! I therefore asked if a lumpectomy was now an option, so she has decided  to keep me on this for a further 3 months…then, hopefully,many,lumpectomy will follow Fingers crossed.  I am very anxious.  I am now worried about the lymphodema that might follow the ALND, just wondered if it was a problem to anyone else, as the bcc has stated that she had seen very few over the years.  I know you can opt for radiotherapy but my consultant did not seem to be worried about the ALND at all.  I also wonder if the letrozole will have made any difference to my lymph nodes and her decision to do an ALND don’t have an appt till end of  November, the waiting is awful, and I know some of you have waited much longer…lots of love Pauline xxx

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I am waiting for my clearance. The surgeon said it he wouldn’t take out too much material so I think they are Hoping to take most. I haven’t been given any options at any stage in my treatment, just told what is happening. The more I read the scarier it seems! 

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Hi All,  Well, I go into hospital tomorrow for an Axillary Node Clearance and haven’t really been given an option.  My tumour (Grade 2 and 1 cm in size with clear margins, so fairly small) was removed in a Lumpectomy on 23 November 2015.  The Sentinel Node didn’t show any worrying signs while I was in surgery and the radioactive dye didn’t throw up any cancer cells.  However … the Pathologist picked up the tiniest amount of cancer cells under the microscope so the Surgeon said she WILL be doing the clearance.

 

Now, like many people here, I read around many subjects.  I have a theory that my tumour may have been instigated by my very first mammogram (in December 2011) when a very rough nurse pushed my small breasts under that torture machine and insisted she wanted ‘‘more’’.  When I returned to work afterwards I laid on the floor of the ladies loo as I was in so much pain.  I’ve been told this isn’t normal.  I also understand in the USA that they don’t give mammograms as a matter of course any more using Ultrasound as the preferred method of viewing.  I now refuse to have a mammogram (causing raised eyebrows at the Primrose Breast Clinic) but I can’t face it and am not confident with it.

 

I also understand that when a Lumpectomy is performed, the Americans rarely do the Axillary Node Clearance, using Radiology instead and will only remove by surgery if essential.  Again, we seem to sit at odds with what our American cousins do.

 

About 15 years ago I worked for a Naval Doctor who always said with medication:  ‘‘If the Americans or the French haven’t tested it then I don’t use it.’’  Why are we so different here in the UK?

 

Misa

 

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Hi virag I’m charlotte. I’m 34 yrs old and am just recovering from having lumpectomy and axillary node clearance. I was told by my surgeon that it was necessary to have all of them out because it hugely reduced the risk of the cancer spreading. I’m not going to lie to you I am in a lot of pain at the moment but it’s only been 8 days since surgery but the majority of the pain is from where I had the nodes removed rather than the excision in my breast. I would recommend having it done but I would also recommend that your make sure u have sufficient pain relief for afterwards. My surgeon didn’t tell me about the pain and side effects from the surgery but I go to a support group once a month and they have had a few people in to speak to us about lymphoedema etc. I like u am dreading the side effects that r meant to follow but I’m just trying to recover from the surgery at the moment.

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My mum had a positive lymph node at diagnosis. Due to this and a large breast tumour size, she had chemo first then slnb to check effectiveness of chemo. As all 4 nodes that they removed were cancer free, they decided to not do a full clearance nor give radiotherapy to the axilla. A few months later the cancer was back in the node. They said it was the original node and somehow the wrong ones were removed. They then did full clearance and only 2 out of all 15 nodes (including the original 4 taken) showed cancer (no scar tissue in remaining 13 either). They 2 were matted together so probably was these two all along. Her CT scan was clear at this point so no further treatment required. Sadly mum developed secondaries a few months later and passed away this month.

There is no way of knowing whether leaving the nodes in resulted in this spread, or whether it had already spread(in spite of the negative ct scan - wouldn’t show small dormant cells).

Knowing what happened to my mum I personally would opt for full clearance in the future. But this is because I’ve been scarred by the whole process that occurred. My mum didn’t want lymphadoema either but in hindsight it’s incomparable to loss of life. I’m not trying to scare anyone - just something to think about as its changed my views should I find myself in this position.
Xx

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Hi everyone

Daisy - I’m so sorry to hear about your Mum developing 2ndaries despite. The lymph nodes are usually very effective at filtering out and trapping any nasties, but it is known, as you found, that occasionally people with no node involvement have gone on to develop 2ndaries. So cancer cells can sometimes pass through or bypass the nodes and spread/metastasise to other areas.It’s one of the reasons, with certain forms of BC that are known to have a greater risk of spread, that Onchologists give chemo, to not just hit the breast tumour but also any rogue cells that may have already spread from these more aggressive types. Thus reduce any possibilities of 2ndaries developing elsewhere later.

I had two mastectomies 2006 2007, both with full lymph node clearance. The 2nd was a month before the SNB testing was accepted in this country, even though it had been given 8 yrs in the USA. We are always behind with procedures in this country. Whether much of that it to do with funding or not I don’t know. Switzerland also seems to be ahead in many medical treatments.

Both my arms are immuno-compromised, which means I cannot have needles for blood tests, anaesthetic or blood pressure cuffs, also have to be careful with cuts, bites, sunburn to hands and arms, because of a higher risk of infection and developing lymphoedema. I wear long sleeves when I’m gardening, avoid sunburn, immediately cover scratches/cuts with antiseptic cream and a plaster. Only had to go get antibiotic cover once so far when got bitten by a dog and could see red “tracking” up my arm vessels within 1/2 hr, which is normal to see in healthy individuals, but would normally be stopped by the axillary lymph nodes to prevent further spread or septicaemia. Hence my need to get antib’s as quickly as poss.

I’ve never (touch wood) developed lymphoedema, but I don’t ever tempt it and have to sometimes fight with medics not to use my arms. I’ve heard of and known women who have devloped it and it can be very difficult to treat or ever get rid of once you have it.

I’ve had 3 ops in the last 6 yrs, a boob recon and 2 knee minor knee ops, all requiring anaesthetic through a cannula. For two the cannala was put into a vein on the top of my foot and the other a vein on my inner ankle. Had NO probs all 3 x as an anaesthetist did the job.

I have, however had a recent prob for a CT scan requiring a cartidge of contrast medium and cannula. The radiographer wasn’t skilled or adept at cannulating the top of feet so, after trying, it was abandoned!! I can’t be the only woman in this town who’s had double masts and lymph node clearance, who has required a detailed CT and contrast through a cannula. What’s happened in their cases I don’t know, but I would have thought that with the number of women such as myself being on the increase, that radiographers would now be trained for such.

Other than the above, I’ve had no probs, but am always careful.

 

Hope that helps and hope you all recover well from ops and treatments and then keep well. Probably see you again in other areas of this wonderfully helpful and supportive forum.

 

Delly xxx 

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I had a lumpectomy and sentinel node removed on the 9/9/16. In my surgery, they remove just the sentinel node and it gets sent to pathology while you are under the anaesthetic. It takes 40 mins for the results to come back and if it’s clear they move on to the lumpectomy. They only remove more nodes if the sentinel tests come back positive for cancer. They keep sending back land forth to pathology until they reach clear nodes. To me that sounds very sensible and should mean you only have one operation but granted everything is double checked again afterwards so there is always a chance they’d need to go back in again.

Given the choice of removing the nodes or not if they’re cancerous I would have to chose for them to be take out. That feeling of relief I had when I had my results was profound; to be told they have removed it all was incredible. 

The rads I know I’m having at some point, and potentially chemo are to give me a healthy future and I will do every thing I can to make sure that happens. I will not risk deciding not to have a particular treatment as I would never forgive myself if it returned because I didn’t do it. I do know it make come back anyway no matter what we do, but at least I’d know we’d done everything. 

It’s a very personal decision that only you can make, with the guidance of your medical team.  I’m young too, just 44 and I intend to be here for another 44 years!!! 

Good luck with everything X 

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I forgot to say - with regards to having mammograms or not - my cancer could only be seen via a mammogram. It was to far in to be picked up on ultrasound. The wire they put in prior to surgery went in 6 cms in all which was a challenge for the surgeon when they came to do the lumpectomy. 

If I’d had only an ultrasound they would never have seen it and I dread to think what would have happened. I went initially with a lump on my left breast which via ultrasound they confirmed was ok - my mammogram picked up another lump in my right breast that would NEVER have been felt because of where it was so I’d never have known it was there. I am lucky. It ended with the consultant radiologist coming to see me to do the ultrasound himself and it definitely couldn’t be seen that way. 

Yes mammograms are bloody uncomfortable, especially when you’re like me and rather big busted. I would go through them daily if it meant they could identify any issues in the future. 

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Here Here Beth.

My 2nd boob cancer was initially misdiagnosed as a group of harmless cysts. Had it not been for a very conscientious surgeon who insisted I had biopsies, it may have been left to progress further. However the biopsies showed another primary tumour.

I’m not a supporter of ultrasound, don’t feel it is accurate enough to provide differential diagnosis with regards to tumours. My previously mentioned detailed liver CT scan, that never happened, was due to an ultrasound scan at my GPs, that had showed up abnormalities- cysts. Hence being referred to a Gastro-enterologist at the local hospital. But due to the probs the radiographers had with cannulating my foot veins for the contrast medium, the Gastro guy had me have another ultrasound, instead of organising someone who was adept/proficient to cannulate a foot vein and be able to give me the more accurate results from a CT scan.Poor managem Talkabout going round in a circle. Showed the same cysts, which he thought were said to be harmless. I’m not convinced, from my previous experience, but I get sooo tired of having to stand up to medics. Shouldn’t have to. Two previous doses of BC should immediately instil an extra vigilance in my view.

I’m also kicking myself, not to have initially asked to go to a different hospital than the local one, which was new to me, and many local people had said had a poor reputation in standards. I’m not in a strong enough state mentally at the mo’ to pursue it any further, and am tired of having to be heard/remind hospital medics, unrelated to BC, of my history - which is ALL down in my notes. But if I continue with my stomach/digestive probs, I shall ask to be referred elsewhere. If further tests show up anything different and adverse, I’ll be gunning for those who didn’t take any notice, and hope it isn’t too late to do anything about. 

 

Sorry for the rant, but it’s been incredibly frustrating. I’m trying to be vigilant, but don’t get anywhere   Delly xxx