Treatment options!

Nick60F

Afternoon all, first thing to say is that I'm not the patient but the husband, so hope it's OK to post here. My wife is not keen to get online at the moment, she has other coping strategies, so I'm the information gatherer/analyst at the moment. Second thing to say is apologies in advance for the long post, but a lot has happened in the last few weeks and I really need some help and advice.

I should also add that I'm in the UK. Obviously our healthcare systems are quite different, but one thing I really like about the US system is that it seems to produce very well informed patients. You all seem to take a very active role in treatment planning rather than deferring to 'experts'. I like that, and that's what I'm trying to do on behalf of my wife. Also, I think it's true to say that the US is ahead of the UK in terms of breast cancer treatment, so that's another reason for posting here – quite shamelessly, I want to tap into the 'best' information available!

Here's our story in brief; three weeks ago my wife had a mastectomy and sentinel node removal. We got the lab results a couple of days ago – two tumours in the breast, the invasive part of each was 10mm and both had a little DCIS around them. One was grade 3 the other was grade 2. Nice clear margins. Both were ER+ HER-. Don't know about PR as that is not routinely tested in the UK, at least not at this stage. All of those results were as expected and broadly in line with the previous mammograms, ultrasounds and biopsies.

The part we were not expecting was that they found 2.5mm of cancer in the sentinel node. We were cautiously optimistic that this wouldn't be the case as the nodes all looked normal on ultrasound – 'clinically node negative' is the phrase I think. That was a bit of a blow which we are slowly coming to terms with. It also leaves us with aproblem in terms of the way forward. It seems that 2mm is some sort of threshold size and since the node malignancy was larger than this we need to consider how we tackle the problem. Our breast surgeon gave us three options; full surgical clearance of the nodes, radiotherapy to the nodes area, or option 3 - do nothing. That last option is based on the fact that we will almost certainly be having chemo, and that alone can deal with the positive node. Apparently our case has been discussed at a multi-disciplinary meeting and the view was that all three options were open and that none of them was significantly better than the others. It has been left for us to decide.

Here are the various conflicting thoughts going through my mind

Surgery 'feels' attractive in the sense that potentially malignant tissue is being physically removed from the body

The radiotherapy option is attractive as it would allow us to start chemo sooner (surgery would introduce a further delay)

Radiotherapy would be just an extension of chest wall radiotherapy, which we would probably be getting anyway (our guidelines say grade 3 = chest wall radiotherapy)

Surgeon said lymphedema risk is similar for surgery or radiotherapy, but I'm not sure I have confidence in this statement – everything I've read since suggests radiotherapy carries significantly less risk

The 'do nothing' option that relies on chemo does not really feel like an option – from the start we said we wanted to throw everything at this disease and we still feel that way

I should add that my wife is 41 and we have young kids (12, 9 , 6). Treating the disease is obviously top priority, but she's very fit and active and quite concerned about lymphedema.

So, what to do, it's a dilemma. I think the US is leading the way in terms of favouring less aggressive treatment to the nodes. I think that if we were being treated in a US breast centre we would probably be steered down the radiotherapy route. I'm wondering to what extent the size of the sentinel node malignancy is significant – it seems to me that 2.5mm is quite small so perhaps this suggests surgery is not indicated? On the other hand, how can they properly stage the cancer without removing more nodes? If lots of nodes were involved we could even end up at stage 3 – I really hope not, but you never know!!! Having said that, do we need to determine stage 2/stage 3 if the result will not change the treatment approach?

One thing that would help is for us to sit down in front of an oncologist and discuss all of this. Unfortunately our oncology referral has only just started and it is likely to be quite a few weeks before we get that opportunity. In theory, the onc's input has already been received via the multi-disciplinary meeting, but that's not the same as a face to face meeting in my opinion.

Sorry to go on so long, but we don't know what to do and we're really struggling. Any thoughts / comments would be gratefully received!

Nick

ElaineTherese

Hmmm..... If you're going to do chemo, there's a pretty good chance that that may clear any cancer out of the nodes. Before chemo, I had one positive node (fine needle biopsy). (The node also looked suspicious for cancer on a PET scan and an MRI.) After chemo, an MRI and PET scan showed that the node was clear. That was then confirmed with surgery, when my surgeon took out all 20 of my Levels 1 and 2 nodes, and they all tested as cancer-free. Yep, I had ALND, and luckily, have not developed lymphedema (yet).

I also had radiation, which was a given because I was HER2+ and Grade 3. It was OK, and didn't lead to lymphedema either.

I was an active/fit 46 year old when diagnosed, and I certainly understand your wife's reluctance to have her nodes cleared out via an ALND. I hope you can sort your options out soon, and feel confident in your decision. Best wishes!

Nick60F

Thanks for the reply. Interesting. Why the ALND when the imaging looked good? I guess they just wanted to take the most conservative / aggressive treatment approach - I have no argument with that!

ElaineTherese

I got ALND because no one knew which of the nodes had tested positive! My radiologist should have put a surgical marker in the compromised node. Then, my surgeon would have only removed the compromised node and a few of its neighbors. But, no. So the surgeon took all 20 out! Ugh.

ruthbru

Couldn't she do the chemo first and then decide on radiation? I had a lumpectomy so knew I was going to have radiation. But there was no question that I would do the chemo before radiation (which I believe is standard procedure in the U.S.). The rationale being that if some cancerous cells have escaped into your system, you want to destroy them FIRST before they can set up shop. The radiation is a mop up of any cells that might be left in the local area.

barbe1958

Personally I wouldn't do the node dissection as it carries future issues. I agree with chemo to catch any buggers wandering around looking for trouble and rads if required.

Nick60F

Thanks all. What you're suggesting is in line with our current thoughts - chemo then rads, with the latter including an extension to the armpit area. I guess the main question I came here with was whether any US centres would likely still suggest ALND in our situation ie one node sampled, 2.5mm of cancer in it? My impression so far is no, they wouldn't

Smurfette26

My surgeon is not in favour of axillary node clearance at all.

He said in the past it was standard practice but now he feels it just creates problems. He said most often the vast majority of cleared nodes came back negative and in some cases women were left with terrible problems with lymphodema. He said every day he feels more confident that the best practice is to monitor closely. In all of his patients he has treated this way in the past, only 2 have required further surgery for more cancerous nodes and their outcomes were no different to those women who didn't need further surgery.

Wishing your family the very best. Donna.

Nick60F

Thanks Donna, appreciate your reply.I see you had four nodes sampled with one positive. That seems to me to be quite a satisfying position and better than having one sampled and one positive. We would be quite open to the idea of having a few more nodes tested, but I don't think they would do that. It seems that the only choices are no more surgery or a full clearance. We are reluctant to have 15 or 20 nodes removed when the likely outcome is that most of them will be negative. I find this all or nothing approach quite frustrating

SpecialK

I had a single sentinel sampled and was declared clear in the OR. In the lab later they found 20 IST (isolated tumor cells - so, not even a micromet) in that node. My surgeon was one of the earliest users of SNB - helped develop the technique and was a principal in the first trials - he is not a reactionary doc and did not not routinely do ALND, even in 2010 when I was diagnosed. The single factor in the decision to do ALND was that I was Her2+. I am an outlier in that another , much larger, positive node was found that was equivalent to a stage 1 breast lump, and was never seen on any imaging done prior to surgery. I am advocating for neither approach - doing ALND, or doing rads and leaving the axilla intact - just telling this story so you have more information. There are a percentage of us that have a "clinically node negative" situation at the time of SNB who actually have more aggressive nodal involvement. 2.5mm is small, but is a macromet, not a micromet. Just a thought, it might be worth a conversation about removing only level 1, leaving levels 2 & 3 intact, and doing cursory pathology in the OR on what is removed. I do have lymphedema in the ALND arm, but I will take it over the surgical removal of cancer any day - chemo and rads, while effective for many, are not a guarantee.

muska

Nick, I am not a medical doctor, so whatever I think is just my understanding from being a patient. In terms of treatment, e.g. chemo selection it doesn't matter much whether someone is stage II or stage III for example. So whether your wife has just one or more than one nodes with cancer most likely will not make that much of a difference in terms of treatments that she will get. The reason why they don't try removing all cancerous nodes, is that it doesn't improve survival but increases the risk of lymphedema. Radiation to axillary should kill whatever might still be there after chemo.

From what you describe it looks like your wife is in good hands. I wouldn't worry much about the nodes if she gets chemo and rads.

Best of luck to you and your wife!

Nick60F

Thanks SpecialK. I think I saw you posting on a different thread. If I remember correctly your other node further up the chain was 6mm? That's exactly the sort of thing that worries me, but, as you say, your case is pretty unusual. Totally with you on the lymphedema preferable to cancer, and also like your idea of examining a few nodes at the next level. That's a discussion I hope to have, but my understanding is that it would be unusual for the BS to agree to that. I assume it's down to cost and minimizing the number of surgeries. If it was down to me we'd be sampling the nodes in some logical sequence until the chances of anything being left behind was vanishingly small

SpecialK

nick - yes, the node further up was 6mm, an unusual presentation with a positive node that large with essentially nothing in the sentinel. I think it would be worth examining a limited axillary clearance, with pathology along the way, with your surgeon. It might be a decent compromise. My situation was further complicated by being someone with a limited number of nodes - we all have differing amounts. Removal of levels 1 & 2 only yielded an additional 11 nodes - and am sure that contributed to my development of lymphedema - I don't have enough nodes in level 3 to compensate for the reduction. There were previous clues to this - I am someone whose hands always swelled with exercise, and feet and ankles would swell if I was on my feet for a long period, or when flying. As far as chemo and rads doing the necessary job - odds are in your favor statistically, but there are always some of us for whom that is not enough. Some have limited shrinkage of their breast tumor when receiving neoadjuvent chemo, and others have a local recurrence after lumpectomy with rads, so there are no guarantees. Your personal risk tolerance comes into play when making these decisions, most definitely. Wishing you the best with these difficult decisions.

Nick60F

muska - thanks, I agree in part - we'll certainly be doing chemo and rads whatever, but if there are a number of additional bad nodes i'd like them removed as a first step. There's no way of knowing that without sampling at least a few more. I found a tool at Sloan Kettering that attempts to predict the likelihood of additional positive nodes given the number of positive sentinels + other tumour characteristics. I dialled in some different figures and the percentages were generally quite high - not sure I believe the numbers given how many patients seem to end up with only one positive node.

SpecialK - limited clearance sounds like the ideal comprise but not sure they will do that. I will push that idea at our next meeting. Via this forum I have just become aware of the reverse arm mapping technique. Never seen that discussed in the UK so that's another avenue to explore :-)

muska

Nick, i understand where you are coming from and the desire to know as many details as possible. The point I am trying to make, is that in your wife's case the knowledge that comes with the price of more surgeries and more associated risks, may not matter for the treatment or the outcome. With this disease, at some point one comes to the realization there are too many unknowns to make any guarantees and more knowledge does not necessarily mean better outcome.

If you do all standard treatments, including chemo and rads - the odds are very much in your favor. I am not sure the treatment plan would be different if they knew your wife has more nodes with cancer. I would actually ask this question: how would the treatment differ if you knew more nodes were involved? And weigh the answer against the risk associated with more surgery and more nodes coming out.

In my case, I was clinical stage 1 with two tiny tumors and no signs of nodal involvement on imaging before surgery. During surgery, one of two sentinel nodes tested positive for cancer. Post-surgery pathology is in my profile below. All impacted nodes had 3mm of cancer, i.e. macro metastasis. Is it possible there were more impacted nodes than what they took out? Yes. Would my tx be different if they took out more nodes? No. I don't have lymphedema and have no problems with range of motion or other shoulder/arm issues.

Best luck to you and your wife!

barbe1958

The chemo and rads would kill tell cancer in the nodes. No sense compromising her lymphatic system by taking more out. 2.5mm is VERY VERY small!

Hopeful82014

Nick, below is a link you may find helpful. You should be able to open it but, if not, you can create a free account at Medscape and then try again. You can also google ASCOG Z0011 trial for additional info.

I do think Muska's comment about the utility of ALND in planning your wife's treatment is important and worth giving a lot of thought to.

In my experience the most qualified surgeons in the US (and many other countries) are moving/have moved away from ALND and, when it's absolutely necessary, are using reverse axillary mapping. ALND carries pretty high risks of lymphedema and very little benefit, in most cases. Some surgeons will pooh-pooh such concerns. Physical therapists, who see the results, do not.

Best to you and your family as you work through these tough decisions.

http://www.medscape.com/medline/abstract/27513155

Nick60F

muska, I understand what you're saying. Our situation started like yours, two small tumours, in our case 1cm each, ER+ HER-, normal looking nodes so clinically stage 1 before surgery. One sentinel node tested, 2.5mm macromet. I hope your situation was unusual - if we do no more surgery, I wouldn't like to think we were leaving behind another half dozen of those!! Did anyone have an explanation for how your small primaries had travelled so far? I think it's more usual to see that sort of node involvement with much larger tumours. Hey ho, there's probably no explanation. That realization process you mentioned - i'm not quite there yet, but i'm on my way :-)

Nick60F

Hopeful, thanks for the link. I'm aware of that study and the general move away from ALND in the US. Part of the reason i'm here is to gather information and try to judge the robustness of that position. There are medics over here who are not convinced - they may be in time, but they're not yet. They started a UK trial to test these ideas about 2 or 3 years ago. It's called POSNOC and my wife was invited to join it. Unfortunately it's too recent to have produced any answers yet. Just a few hours ago we got a surprise - we have an oncology appointment on Monday!!! Looking forward to discussing some of this with the onc - hope he has plenty of time to spare :-)

Hopeful82014

Hi, Nick - Just to clarify; it's not just surgeons in the US - Smurfette, above, is in Australia, where it's apparently losing favor as well.

I'm glad you have an appointment Monday and hope it helps you two move forward with confidence. (You may find it helpful to record the appointment (on your phone, for example) for later review, if you've not already gotten in the habit of doing so.)

rozem

there are many recent studies that say Rads poses a smaller risk of lymphadema then ALND and just as effective.

I'm in Canada and our doctors have moved away from full dissection as well. Of course every case is different. From my understanding macro mets to nodes necessitates more nodes being removed. I'm sure being her2 triple neg is also a factor

Hopeful82014

Rozem, even macromets don't necessarily translate into need for ALND. My MO, BS and 2 ROs all advised against ALND. I did have additional fields of radiation, of course.

My guess is that 10 years from now ALND will be quite rarely used. We'll see...

muska

Nick, I don't think my case was that unusual. As for the explanation why very small tumors sometimes travel far nobody knows, maybe it had been there for a long time - my docs estimated six or seven years - or maybe something else. That's a systemic disease and surgery is not the ultimate solution for a systemic disease

Sabina1974

Hi Nick

I hope ye are all doing well and coping with this very awful disease. I live in Ireland and like the UK we are not as informed about our diagnosis as they are in the states.

Our story began on July 7th of this year when I was diagnosed with BC, I also had 2.5 mm and .4mm in my two sentinel nodes, a shock as like yourselves the scans were clear. I in turn went on to have a full node clearance, 21 in total all negative as my surgeon predicted. The treshold for micromets is 2mm anything over and they like to do more aggressive treatment. I forgot to mention I am also only 41 and have a wonderful husband and my only boy who is 8. I had cancer when I was a teenager making getting pregnant very difficult. I am now just finished my second cycle of chemo, taxoterre and cycotoxan, TC they like to call it. I am not doing to bad very tired and just weak for a few days after wards.

Anyway that's our story reaching out as they say, I hope ye have a good Christmas.

Sabina

Nick60F

Hi Sabina, thanks for your reply. Looks like you're a few months ahead of us as our diagnosis was 11th October. We have our oncology appointment tomorrow so I'm hoping that will move things forward in terms of treatment decisions. We know we're in for chemo and radiotherapy, the question mark is just about this positive sentinel node. Sounds like you weren't offered any alternatives to a full node clearance. That might have made our lives simpler but instead we find ourselves with some decisions to make. I keep swerving from one viewpoint to another - this evening I'm thinking let's get the nodes out. We don't whether there's any more cancer but there might be, and the primary therapy for cancer is 'cut it out' where possible. I'll probably have changed my view by morning!

Sounds like you're doing OK on the chemo, well done and long may it continue. Thanks for your Christmas wishes and the same to you - we'll try our best for a great Christmas, it's certainly going to be different to all previous ones :-)

Nick

Sabina1974

Hi Nick

You are right was not really given any other option, but I did it and have no side affects from it thank god. I know you keep searching for answers hoping that you come up with right one. The way I look at it don't look to far ahead one step at a time. If it's hormone fed that's a good thing they can treat it afterwards with Tamoxifen. Anyway best of luck again.

Sabina

SusanaQ

Hi Nick,

My path report is similar to your wife's. I had R mastectomy on 6/30/16, 1.5 cm. IDC, 1/1 sentinel node with 2.3 macromet. I was offered an ALND as an option but decided to have full radiation after 6 rounds of Cytoxan and Taxotere (#6 and last is this Friday, 12/2/16). I start rads in a January. My MO and BS, conferred with "tumor board" and they concurred that it was to my quality of life benefit to forego the ALND, as I am right hand dominant and a competitive tennis player, (which is a great joy in my life) & I wish minimize the burden of lymphedema. I accept there will likely be some lymphedema after the axila is radiated but the data I was presented shows a significant reduction in lymphedema vs. ALND. I also share with you the concern of the unknown regarding "how many more nodes were positive? How do I know my true stage?" MO said it wouldnt change my treatment regimen. Now I just have to trust and keep the faith.

Bravemama34

I have a very similar story. My surgeon refused to do more surgery however. I would have liked to remove all cancer however

Nick60F

Hi Susana, thanks, and yes your situation does look very similar. I kind of guessed they would say that about the staging question - you don't need to know because nothing would change. I see your profile says stage IIb, is there a particular reason for that as I thought you would fit the IIa criteria? (there he goes again, obsessed with numbers!)

Nick60F

Oncology appointment today was slightly scary but quite illuminating. The consultant had a view and steered us down a particular course. I liked him.

The plan is to start with six cycles of TAC (I think it's more often described as AC +T on this forum). After that we do a full axillary clearance and, based on the lab results, we may then do RT to the supraclavicular fossa. I understand there should be no cancer in the nodes following chemo, but there may be evidence of previous cancer – if four or more nodes show evidence this will trigger RT treatment. His view was that he didn't expect much more node involvement, but he'd prefer to check than to guess.

He said my wife's case was a typical young woman's cancer – grade 3 and able to 'travel' (the 1cm tumour had already found its way to the sentinel node). He said the most important thing was not the actual presence of cancer in the node, but what that told him about the tumour biology. Sobering, but we ended on a positive note – he said we'd found this cancer quite early and following the aggressive treatment he was suggesting, he expected to never hear from it again. Here's hoping!

barbe1958

Great to have a plan in place isn't it? Now you are back in control and it will help you all focus on healing. Thanks for letting us know. Give your wife gentle hugs...