I recently had DCIS removed with clear margins plus 2 Sentinal Nodes. When I went for the path results on Monday the DCIS was Grade 1, very small and margins were clear - great news so far. However, she did say that one of the sentinel nodes contained a micromet (which had drifted in from the DCIS). I now have to choose treatment - I had fully expected to have radiotherapy on my breast (with or without Tamoxifen),but should I have it to my armpit as well? I don’t really want to in view of the risk of Lymphodema and surgeon said that until recently in the UK, one micromet in one node was considered negative and in fact still is considered negative in most of the world including Europe. It will be my choice and I’ve read a load of stuff online about overtreating these things. Any advice girls?
Oh dear - sometimes you just need to be told what to do don’t you.
I’m in the middle of chemo at the mo’ and think i might have to make the same decision about rads.
I think what’s complicated it is the fact that if you’d had the same dx a while back it would be in a diff story. What evidence have they based the new advise on? How much will it reduce your reocurrence risks?
I tend to go for the ‘boots and braces’ approach but i’m also aware of the dreaded lymphodema.
Can you make another appointment to have answers to questions?
sorry i’m sitting on the fence, maybe someone else has faced the same thing.
Yes I have a meeting on Monday with the Consultant - she’s a very sensible woman and I doubt she will want to ‘overtreat’, especially as a) the removed DCIS was a low Grade 1 and b) the stray micromet in the sentinel node is now out anyway. As there is no evidence that there are more micromets present, my inclination at the moment is to just have the planned radiotherapy to the breast and leave the armpit well alone… unless of course the Consultant has some compelling argument to the contrary. I hope to avoid chemo altogether and wish you the very best of luck with your remaining treatment
I was dx in 2006 with 2 micromets in the sentinel node. It was then that I discovered micromets are a ‘grey area’, there wasn’t much information out there, some oncs treat as node negative, some as node positive. My onc made the decision for me and said whilst he was over treating me he was going to err on the side of caution. I am so glad he made that decision for me but it was a bit of a no brainer I suppose as I had to have chemo and rads anyway because I was Grade 3, plus by being treated as ‘node positive’ I was then able to have taxotere. If my onc had declared me as ‘node negative’ I would have had 6 x FEC whereas I went on to have 3 x FEC and 3 x Taxotere.
However, although I had 2 micromets, I didn’t go on to have a full node clearance (ANC) - again there are different views, some surgeons will perform ANC and some don’t. My surgeon had initially said that if there was any trace of cancer found in the nodes then I would have a full ANC. When the path report came back with micromets he changed his mind. So, I have had rads to the armpit. I still wonder to this day should I have had the ANC. My surgeon made the choice for me and I trusted him, plus I wasn’t really in any fit state at the time to even question him to be honest.
Lymphodema is not something I would want but a recurrence of cancer is absolutely not what I would want. As my onc used to say ‘its complicated’. I would see what your consultant says on Monday, ask what she would do in your situation as one of your questions. It is really hard enough as it is without all this extra worry. Please keep us posted. Best wishes. Love xxxx
Thanks for this, yes its very confusing and when all I’m doing is sitting at home worrying and reading research on various treatments, you end up not being able to see the wood for trees.
Did you have any side effects from the rads in the armpit?
I went to the physio sessions at the hospital and they frightened the life out of me. I had a new born baby and a toddler so there was no way I couldn’t not use my arm. My arm has given me no problems except for a bit of tennis elbow when I took up tennis again but that’s gone now. I use my arm normally but must admit I do think twice about carrying anything really heavy with my right arm. It bordered on ridiculous at times at the physio sessions though i.e. try and not get stung by insects on the affected arm!!!
I am not sure whether the risk of lymphodema is higher with ANC than with rads or whether there is no difference in risk - you may want to check this out. There are threads on here about lymphodema so it may be worth having a look at them.
Good luck with whatever you decide. Love xxx
Thanks again, it all helps. Mine is left side and I’m left handed, so I don’t want to risk any lingering disability of my left arm/hand as I need to write quite a bit for my job.
I can’t help feeling that the armpit radiotherapy must be the lesser of the 2 evils vs ANC.
I really appreciate you taking the time to help though.
I apologise for sounding harsh, but frankly, lymphodema won’t kill you - metastatic cancer can, and does kill.
As someone with metastatic cancer I would love to be in your position. If only a doctor could tell me that I’m probably going to be fine, and just to be on the safe side have a course of radiotherapy, I would be jumping for joy - not debating on a cancer forum.
I appreciate that a cancer diagnosis is worrying, no matter what stage you are, but when I read about people considering whether to refuse treatment that could improver their chances of survival, it makes me so upset - because I will never have that option. In some ways I feel like someone who is dying of starvation watching someone throw a loaf of bread in the bin. I know the bread won’t save me, but it still hurts to see it wasted.
My surgeon has said NO to radiotherapy under the arm but yes to supra clavicle and breast. Doesn’t agree in doing surgery to nodes and radio as it increases the risk of lymphodeama. I did have neo chemo though that has resolved my nodes and they have never found my primary tumour so im a little different.
I saw the surgeon this morning and she told me that I don’t need the nodes stripped out or any chemo as these would be ‘overkill’ for a tiny micromet of a Grade 1 DCIS. However, she is recommending rads for the armpit as well as the breast, followed by Tamoxifen. I now await an appointment with the oncologist to discuss this and I will ask him for his view on the ‘node-negative/node-positive’ question which seems to be quite a hot topic across the world.
I also need to see if he feels the risks associated with armpit rads are high when balanced against the small risk of having any more micromets being left in there. I really do not want to be treated unnecessarily if at all possible, but I will go along with a strong argument if he has one.
Can I just say that I do realise that my situation and the decisions and treatment I face are absolutely nothing when compared with some of you girls. I cry for you and the terrible treatments and prognoses you face, but nevertheless I would like to think that even my Grade 1 DCIS and micromet experience and the implications to my own peace of mind can help someone who may be in my position and scared out of their wits just at the mention of the ‘c’ word.
Love and good luck to you all. Judy x
Just to add re the lymphodaeama question - my onc’s advice is that there is more risk of lymphodeama from radiotherapy than surgery under the arm, so I am having my reconstruction removed (as I had a recurrance within 6 months there) and ANC. Radiotherapy will just be on breast/chest area but not under the arm even though I have affected nodes there. However, not sure whether her advice is based on research findings or anecdote.
Sorry to butt into the thread.
I had stage 1, grade 1 bc and count myself as very fortunate. My mother died of bc as a result of recurrance in the lymph and suffered from lymphodoema. Lymphodoema was horrible and painful, I was concerned about it when waiting for results of my SNB and in talking about the rads which I am due to have (to breast area). It wasn’t nearly as horrible as my mother’s recurrence though.
I would still have gone for anc and rads to underarm if recommended, even though we are much better at surgery, treatments and drugs such that my mother’s bc would not - so they told me at the time - have suffered recurrence now given what they now know.
That said, we are all different in our dx, histology and prognosis so what is recommended for one person who sounds as though they are in a similar situation may not necessarily be for another. The surgeon and onc will give you as many stats and probabilities as you want and will weigh up the pluses and minuses of different treatment options. Many prefer to treat harshly up front if it gives a better prognosis and I am right with them on that one x
I say throw it all my way< I have lived for 14 years wondering…and fair to say have been lulled into afalse sense of security I now have in the other side Extensive DCIS, grade 2 invasive, and extensive LVI?? If they tell me I have to chop a leg off but I will live I’ll do it to see my kids grow up!! I have struggled with ltmphodeama in my right hand/arm and would not want it in the other I would like to keep wearing my wedding rings But it will be a small price to pay to see my babies grow up!! Its not easy and we ARE ALL DIFFERENT love J
Oddly enough, I met an older lady at the clinic today who told me she had her first WLE two years ago for DCIS, no lymph node involvement and no further treatment then. Recently she had to have surgery again for a recurrence in the same breast in a differnt location-again no lymph node involvement- but on this occasion rads (whole breast) were offered.
Given one of the reasons for rads is to mop up any stray cells that MAY have been left behind after surgery, I found myself wondering if the second DCIS could perhaps have been prevented, had she received rads on the first occaion… Impossible to know for sure, but a distince possiblity nonetheless!