Topic: Axillary, should it stay or go?

I don't know about this not picking your kids up.  You can keep on doing what you're doing if you have the full dissection.  I had a positive node and didn't hesitate to have the full dissection.  Even though I had no further positive nodes and even though I did develop LE over four years after (entirely manageable in my case, I haven't been restricted) I have no regrets.  I would never have known my stage otherwise and the idea that I might have left cancer behind in my body would have made me crazy.

 I know other women have found this a more difficult decision, so I'm sure others will weigh in. 

Hello Kayleigh - you and I have an identical dilemna!   I have simply not yet decided whether I am prepared for a full strip.  I MIGHT consent to the removal of another say 6 nodes.

It isn't just a question of not being able to do household chores.  LE would affect my career very negatively.  I don't have an answer, Iread all the different reports too.  Frankly, even with chemo I think not doing the full axilla strip could be a gamble.  But then one questions the overall efficacy of the chemo then...

One way I can help you though - I have the remnants of unhealed wounds and what has absolutely saved the day and promoted skin growth very quickly indeed is honey dressings.  My central London hospital prescribes these  - I am sure they must be obtainable in the USA too. (They are called Activon Tulle - primary wound dressing with active honey.  Made by Advancis in England but I don't know if it is the same in the US.) Last week I must have grown a good 2 inches on one breast.  The honey also takes down inflammation.  I had worried that they simply wouldn't be healing dring chemo (I am doing FEC) but how wrong I was, and how this has cheered me up.

good luck all -

Good luck to you - 

Hello Kayleigh

I am am in a similar  situation. i had four sn that had a few cells. I was quoted the same study in the Netherlands, and both my BS and onc agreed I did not need to do a full axillary dissection. Lymphedema would destroy my career. I  just finished chemo, and they are going to radiate the heck out of me.  Good luck with your decision

Jane, very similar: the only really good study I've seen on ANLD and LE followed women for 20 years, and nearly half developed LE, with 1%/year developing it after the initial first 5 years.

I work in rad onc, and I don't have stats, and a lot of risk is dependent on how many fields are involved: the level I, II, III and/or supraclavicular. Also, there's a lot of expertise involved in creating the fields--I'm not a rad onc, I just listen in on the discussions about how they plan treatment.

I did a quick search for absolute numbers and just came up with increased risk. In my experience, some rad oncs are very aware of the increased risk and others are not.

The median onset from radiation to LE was 39 months: radiation changes occur gradually.

We're not experts and no substitutes for your doctors, and you should discuss this with your treating physicians, so you can weigh the risks and benefits of the treatments.

Kira 

bump

I don't want to minimize LE, it can be a terrible challenge.  But i don't think any of us who have LE and are parents feel we are failing our children.  Maybe I should just speak for myself.  I am all the things you want to be -- happy and healthy, active and fulfilled and very much present and engaged for my children -- and I have LE.  But this is the thing -- I was diagnosed with breast cancer just about five years ago and I'm still here.  I am raising my children.  This is the most important thing.  I never have to wonder if I did everything I could. 

And the odds are that if you have the full dissection you won't get LE.  Of course, you might.  But you might get it anyway from the node you've already had removed.  I agree with Binney -- we deal with the challenge right smack in our face right now.  That will give you the strength and experience to deal with the challenges that follow. 

Kayleigh - with regard to the Dutch study, it is just what it says in funding terms - the Dutch government funded it.  It also got some further funding from (I think) two charities.

This sort of thing is very common in the UK and mainland Europe.  (it may also be elsewhere but I don't happen to kow about that). This does not mean of course that some studies are not funded or part funded by drug companies, but many University studies or Medical Institutions fund from within an overall budget.  Also, bear in mind that this is about statistical analysis of results.  IT is not drug development, so the costs are miniscule in comparison.  I am not sure that I could agree that the Dutch study had any kind of foregone conclusion.  I do think the use of English is a little strong (that's sort of what I thought when first I read the study itself).  What is being referred to with the longer follow up is the common pattern in statistical analysis (I am pretty sure I have seen this mentioned in a number of other studies) - it is sort of a function of aging.

I grew up with a lovely mother who also happened to have cancer.  I never really had any sense that she couldn't do some things - I only saw her as my wonderful, talented, pretty, loving mother.  As an adult I can look back and marvel at all sorts of things, and people have often said to me it must have been so awful growing up that way.

Well it wasn't.  Children accept what is their experience of the "norm" in their home.  It seems to me that children in particular don't have any expectation of their mother being perfect, because they haven't yet conceptualised "perfect".  They just love their mummy.

Anyway, hope the honey dressings do the trick, and good luck with everything -

xxxx 

Kayleigh I bumped an older post from 2007 for you and London-Virgina.  The post is called "Removing Lymphe Nodes".  I know how difficult a decision this is for both of you and there are no easy answers.

I am now more than 9 years out from my diagnosis of an invasive ductal cancer and that cancer has never returned. I did refuse additional axillary node removal.  Each of our cases is unique however, so what is right for one may not be right for another. Here is an excerpt from my comments on this issue in 2007.

I too had a lumpectomy and SNB in 2000 on the right breast for a small invasive ductal cancer. The preliminary path report my surgeon received while I was still on the table was that my nodes were all clear. She had removed 6 nodes in the SNB procedure. My onc told me she planned to only do radiation of the breast and no chemo would be needed.

One week later we got back the final pathology report which included the Histochemistry...these showed that I had micromets to 2 of the sentinel nodes. My surgeon also wanted to take me back for a complete axillary dissection. My onc told me that the presence of any cancer cells in the nodes kicked me into needing chemo. The plan was to use standard chemo protocol (which back then was AC/Taxol) radiation of the breast plus the lower axilla, and start on Tamoxifen.

I chose to not have any additional axillary nodes removed because I had only a very tiny amount of cancer found in the 2 nodes, the other 4 were clear, and now that I would have chemo anyway my treatment plan would be the same whether I had additional nodes removed or not. I knew there was a risk in making that decision but had my oncs support and felt the risk of LE was greater in my specific situation.

As it turns out that cancer was very successfully treated without any recurrence or development of LE in my right arm. In 2005 however, we found a brand new primary BC, this time Lobular in the opposite breast. My decision process this time was much different because of the much more advanced pathology. We knew based on MRI and PET that I definitely had nodal involvement on the left. A SNB was attempted at the time of my bilateral mastectomy but not surprisingly the surgeon had to do a total axillary clearance including all 3 levels of nodes. 23 nodes were removed, all 23 positive. In this situation I knew the removal of so many cancerous nodes was essential in my goal of successful treatment along with full chemo, radiation and hormonal therapies.

I developed LE of the left arm within 2 months of surgery and while taking chemo. I am very grateful today that my dominant right arm remains non-affected by LE even though I recognize it will always be at risk.

Binney very appropriately points out that the decision making process MUST be focused first on the successful treatment of your cancer. The type of cancer (ductal vs lobular or other types), the grade, degree of nodal involvement and plan for chemo/radiation and hormonals should all come into play when deciding whether to have further nodes removed.

I have had experience now with 2 very different situations and thus 2 different decisions. I do not regret either of my decisions made in 2000 or 2005. As much as we all hope to find a "roadmap" that will tell us what to do, we must make our decisions based on the best current information provided to us by our professionals and then go with what feels right for us.

I wish you the best in your journey! Please come here often for support. You will find that many of us have dealt with very similar feelings, fears and anxiety and you never have to feel alone.

I just wanted to chime in with my experiences. I had a mastectomy on my left side, lumpectomy on the right and SNB on both sides. Or so I thought! Unbeknownst to me, the surgeon felt a hard sentinal node and took out a bunch of extra nodes to save me an extra surgery. 10 nodes must be taken out for it to be considered an axillary dissection. My sentinal nodes were negative during the operation, but my path report came back with 7 of 13 nodes positive. The sentinal node had 5 mm of cancer and the other 6 all had macromets so I wouldn't have had a choice whether to take them out in the end.

As I said, I thought I had only had a SNB on both sides and didn't find out until my checkup with my surgeon a month later. I had been very worried about my left arm because it was quite uncomfortable for 3-4 weeks  and even now (5 weeks post-op) I feel like I swell up under my armpit in the evening if I rush around too much during the day. Of course, now that I know I had an ALND it all makes sense that it should take longer to feel normal.

I had full range of motion from about 4 days post-op, though it did hurt some to raise my arm over my head. I found that I had to always keep stretching or things would tighten up. Now I have some cording, but I just keep stretching and it is fine. It may be that I am a little fanatical, but I just stretch all day long- my boyfriend only gets embarrassed when I walk on the street with my arm over my head! My BS says that they have best results with the patients that use their arms the most after surgery. But my LE physical therapist says that they now recommend being quite careful the first 2 weeks then gradually increasing the activity. I would say I did something in between the 2 recommendations. 

There are two things that have made me more comfortable with the fact that I had to have ALND. One is that my surgeon has developed a specially careful technique when he operates the nodes. He manages to save the 3 intercostobracchial nerves and this reduces the occurance of LE and other problems. He seemed particularly proud that I still have feeling on the under side of my upper arm. Now I don't know if this technique is widely spread (my doctor said he taught it to the other doctors in Norway) but I do read about alot of women that have numbness on the under side of their arms so I am guessing that it would be something to check out. My doctor says that he has only had 2 patients with LE. I would post the link to his paper here, but it is in Norwegian....

On the recommendation of others on this site, I have also taken contact with a LE oncology physical therapy specialist and will have sessions with her. It makes me feel better that I have a specialist that can help me watch out for any early warning signs and nip it in the bud if anything should happen. I read that LE treatment was developed in Germany, so I chose a therapist that was trained in Germany and that teaches other LE specialists here in Norway. She also used to work in the cancer center at one of the big hospitals here, so I feel in good hands. 

I know this is a thread about making the choice of having ALND or not and that I can't help out with. But I just wanted to give you a detailed account of how I experienced the time after the operation. Though I will have to be careful with my left arm for the rest of my life, after 5 weeks I am using my arm pretty normally. I think I would wait a few more weeks if I were going to be doing something intensive with my arm that I wouldn't be able to stop if I wanted to. I was extremely worried about the ALND thing before, but for me it has turned out to be something of a non-event (one must always add, so far....). If any of you do decide to do it, I do hope that your experiece will be equally non-eventful!

Just saw this excellent thread and am facing the same decision.

Kayleigh, London-Virginia: Which way did you go, and how are you doing?

So grateful to all you ladies for sharing your experiences -- and the recent studies.