Surgery Option or Not?

elisewjk

Hi Everyone, I was diagnosed de novo Stage 4 with breast, lymph node and bone/spine mets in Oct 2018. I've had really good response to treatment with Letrazole/Ribociclib/Denosumab whereby the breast lesion and lymph nodes are barely visible on my last CT/Bones scans in May, they've shrunken significantly. My bone/spine mets is relatively inactive and stable. All good, yay! So today I saw my Breast Surgeon for a courtesy progress check and she is now offering the option of surgery to remove what remains of my breast lesion and possibly "Level 1" lymph node removal. Am having an ultrasound next Thu to actually find out what is remaining, as not much is showing up on the scans and on physical exam today, she couldn't really feel anything either. She was rather taken aback at my response to treatment and said I had "responded remarkably well", double yay!

So my questions are:
1. Would you have the breast surgery? I'm told it would be "minor surgery"/day job, no drain, 1-2 weeks recovery, they remove the lesion with a wire, so no big cuts. I would potentially have shooting pains that last a few seconds from time to time, most likely forever, post surgery.

2. Would you have the lymph node removal? Depending on ultrasound results, but she's thinking to do only a Level 1 lymph node removal, which is the lowest level of that type of surgery. She said post surgery, I may get numbness in armpit/upper arm from nerves being cut, apprx 15% /lower risk of getting lymphodaema, may get some cording in my arm which could be resolved by phsyio.

She spoke with my Onco whilst I was seeing her. He's on the fence and said they decision is up to me. I would just need to go off the Ribos' for 2 weeks prior to surgery. Post surgery, I'm not sure what happens yet... may depend on the lymph node prognosis as well I guess. I may need some radiation therapy... chemo wasn't really mentioned at this stage. I was thinking (but to be discussed), I'd just go back on the drug therapy as per before.

I know there are no guarantees that the cancer would be entirely removed and it could come back in the breast/lymph node. And they of course can't remove it from my spine. The bonuses would be that I would get some definite pathologies post surgery of the lesions and potentially I wouldn't have to deal with large tumours in my breast/lymph down the track, and then just focus more on holding the cancer at bay in my spine. And I know it could eventually show up elsewhere as well. But removal, would be just that little bit less cancer in my body.

I've got to have some more discussions with the Surgeon and my Onco, but I'm leaning towards doing the surgery at this point. However, I'd really value any thoughts from anyone out there on this. Has anyone done this? What have been your experiences? What are the gotcha's I need to look out for? Or should I not do it? What do you think?

Sister

I'm not in your position so I wouldn't want to give advice.  I guess there's some questions to ask the medicos.  How is the tumour in the breast likely to change in the future and is there any value in removing the lymph node?  The node surgery is the one that causes most grief afterwards as the nerves are often compromised which is not pleasant, and there is a small chance of lymphoedema.  I wouldn't necessarily brush of cording, either.  For some of us (pointing to myself), it is not resolved by physio, merely managed, so while not by any means a deal-breaker, it shouldn't be dismissed as irrelevant.  Is a short break from the medication likely to cause any problem?  On the other hand, I'm sure that you would love to get rid of that tumour and it sounds like it's going to be a very minor operation.  There would also be benefit in having definite pathology of the cancer.

If it were me, I would ask more questions about the need for the node removal (and you may already have) and I would also question the impact of going off meds (again, you may already have).

It sounds like you have had a really positive result from the medication which is great!

Zoffiel

Hi @elisewjk
It would be worth having a further discussion with your surgeon about what the surgery could actually achieve and what the potential risks could be (apart from the obvious ones connected to any surgery of any type) Sometimes you just have to go with your gut feeling on these things but it is very important to be thoroughly informed before you make a final decision.
It sounds like you are having an excellent response to your current treatment  which is so good to hear. MXX

youngdogmum

Not in your position but I’m glad to hear you’ve had such amazing response to treatment so far!!!! What a win  

From a surgical perspective I had a level 2 clearance. My only advice is understanding your arm movements might be restricted post op.. I’m 3.5 months post surgery and despite a lot of stretching/physio still have issues.. they are minor and are probably going to be worse than yours would be as I also had a mastectomy plus higher clearance.

I suppose how active do you want to be with that arm? Are you still working? Does this involve your arms a lot? Its a small risk but feeling comfortable with knowing the outcome will help accepting them if you end up getting pain/issues after surgery. 

The biggest impact my arm has is I can’t reach my top cupboards anymore with that hand, just doesn’t stretch that little bit further to get there  

Best of luck with your decision x

Blossom1961

Hi @elisewjk I had a level 2 anxillery clearance and mastectomy on one side only six months ago. I almost have my full range of movement back. I hung up my washing for the first time last week. I could reach the line but couldn’t get the pegs working in the past six months. Every one is different in how they respond. I have slight cording which I live with. It doesn’t restrict me, just a bit tight. Don’t let them push you into a decision. Find out all the facts from them that you can, then think about what is right for you. All the best. xxx

primek

I would probably have the primary removed and nodes. This way you won't need to deal with a regrowing primary should treatment stop working and also reduces more rapid spread of metasteses (although I'd check this with the surgeon of course ) as it's removal of original source. I wouldn't think they would offer surgery if they thought it wouldn't be of any benefit to you. 

TonyaM

I can see the benefit in a lumpectomy ie obtaining accurate pathology and psychologically knowing the sucker’s been removed but I’m questioning the node removal.They are usually removed to see if cancer has spread and you already know that.I had a full node clearance(all 17 clear) and my under arm is completely numb. Although I don’t have lymphoedema,my arm has never been quite the same. I’ve had Breast cancer twice in the same Breast and each time my initial reaction has been ‘get it out of me quick’!!
But that’s just me.I recovered quite quickly from the lumpectomy but the underarm cut and radiation were the killers.7 yrs later it came back in the same spot despite radiation and clear margins so I had a mastectomy. So I would be questioning the reason behind taking lymph nodes and ultimately follow your gut.

elisewjk

Hi Everyone, thanks so much for sharing your advice and experiences, it is very valuable to me.

Having mulled it over for a few days now, I know I just need to wait and see what the ultrasound brings first. IF that is positive, I think I really need to consider the issue of surgery, a lumpectomy, and Level 1 nodes with the experimental blue dye thingy or just "normal" lymph node removal or combo thereof. 

I also need to find out more about the benefits, as when I was first diagnosed they advised it would just be all too major surgery and that my quality of life was at risk, so it wasn't being entertained at that time. But that thought seems to have changed dramatically. I'm thinking, I'm still Stage 4 and that isn't going to change. However, the idea of having some of the cancer out of me, appeals to me.

You've all raised great points about cording/physio/arm effects which I need to consider further, I'll need to find out more about possible lymphodaema effects and I will need to find out more about post surgery treatment. I'm still working full time, I'm an office worker and when I asked the surgeon would my arm be affected so that it would affect my work/typing she said I should be ok.

Does anyone have the shooting pains in the breast all the time post surgery please? Are they very painful? How often? Are they manageable?

How much time did you have off work (if you are still working)? How long did it take to recover til you reached some semblance of "normal" please?

I'm accumulating my second round of questions for the Surgeon, and also my Oncologist. I also need to get clear in my head what post surgery treatment might entail in terms of possible radiotherapy, and the hormone/drug therapy I'm currently on and/or when that might/might not resume, given I've had quite positive response to the drugs currently. I don't feel I'm being badgered into surgery by either the Surgeon or the Onco...I might also ask them to put this up for discussion with the Multi Disciplinary Team and see what comes back from there. 

So much to still think about... the gift that keeps on giving... lol

Thanks again for helping me think this through everyone, it is very much appreciated.

Warmest regards
E

youngdogmum

Hi @elisewjk
After the initial 2-3 week recovery period I had very little pain, surgery to me was an absolute walk in the park.. but I now have nerve pain across my chest and underarm several times a day. It’s manageable, just annoying. 
Im not working right now during active treatment.. I have wondered if I’ll be able to return to work in my former capacity (hands on paediatric nurse) and I don’t know yet sorry.. I hope to! 

Sense of normality after axillary clearance I would say 6 weeks to hang out washing fully, carry things in that arm. I’ve been doing light weights since 8 weeks I think (still on 2kg in that arm)

kezmusc

Hi @elisewjk,

Fantastic that your response to the treatment has been good.   There are always too many choices aren't there?

Have you requested an MRI?  Only suggesting as it might give a clearer idea of size etc.  Neither mammogram or u/sound could find my breast tumour,we knew it was there as my initial findings were in the lymph nodes. The MRI found it and it was exactly the size it said when they operated.
I had level 2 axillary clearance. 24 nodes out and 5 positive.
 I regained full strength very quickly but you have to do your exercises and more if you can.  I had a bit of cording at the beginnning but that was cleared up with a couple of physio sessions.
There was a lot of numbness for a while but it has returned to very close to normal these days.  The sharp shooting pains are the nerves starting to fire up again. They lasted a few months then went. Annoying and take you a bit by surprise at times but they go.
Everyone is different but I was renovating, running the farm, mowing, fencing etc within a couple of months.  Have had no trouble with lymphodema. The only thing that is a bit annoying is the vibration from the mower/blower vac those sort of vibratey things   Not really a problem just feels a bit weird sometimes.

Best of luck with your decisions.   
xoxoxoxo

TonyaM

I think I went back to work about 3 weeks after lumpectomy and I had no pains or problems with my breast- my underarm was another story.It took over 6wks and lots of physio before I could raise my arm above my head.After radiation my breast never felt right- constant discomfort,weird pains and hard as a rock.But we are all different and this is just my experience.

kezmusc

@TonyaM,  I feel you about the rock thing. Same here.Oh well, at least it's going to stay perky right?? LOL

TonyaM

Mm,while the other one drops! Anyway,it’s gone now with a mastectomy.

Sister

Even the nicest surgeons seem to downplay the problems post-surgery with lymph nodes - I suppose they figure that they've got to go (the nodes, that is).  For me, the underarm area was agony for a week or so after surgery - I felt as if it was blistering from contact with anything but the skin was actually fine.  That settled down fairly quickly but 18 months later, it still gets slightly tender and burns a little.  I also have an area where the drain was that remains tender and burns if I've been wearing a bra all day.  I have never regained the feeling under my arm - it's still pretty numb.  I get cording - no-one really knows why it occurs - some cording can be sorted but some like mine, can only be managed.  My scar also likes to adhere to surrounding tissue.  For these I have to do my stretches regularly and I see a specialist physio every 6-8 weeks to loosen things up.  All of this adds up to a nuisance factor most of the time unless the cording flares badly which impacts on movement.  I do what I can to stay on top of things.  I can do most things except reach for the top shelf and I'm hyper-aware of injuries to the skin on that side which I find, bothers me most.

If you do decide to have the lymph nodes taken, please investigate getting a baseline measurement for fluid so that you can be monitored for lymphoedema in the future.  A lymphoedema physio should be able to do this for you or your clinic or breast care nurse may have a recommendation.

elisewjk

Thanks everyone, all your comments and experiences have been helpful and given me things to think about

So I've had further ultra sound tests and seen the Surgeon 3 times now with lots of questions - she said I was one of the best prepared people I'd seen! lol I've also discussed with my Onco and its also been discussed by the Multi Disciplinary Team. 

The general consensus from the MDT was to remove the breast primary with a lumpectomy, leave the lymph nodes. The Surgeon is a little more keen to go after the lymph nodes as well as she wants to minimise potential disease (potentially only Level 1 auxillary clearance or a biopsy/wire type thingy). Even so, she is very conservative and is very concerned about the things that might cause grief particularly the cording and lymphodema. The Onco was saying, you currently have good local control and shrinkage, leave well enough alone for now til things start moving. I'd have to go off the Ribo's 2 weeks before and after surgery (to allow for immunity to bump back up), then just recommence. He suggested no post surgery radiotherapy in the lymphs to mitigate the lympodema possibility. Everyone has said that I've had had remarkable response with the Ribociclib/Letrozole and there seems to be an element of surprise that I've done so well so far - I didn't have anything to gauge that against, so I will take that as a win

In the end, I've said to them, let me enjoy my "happy 3 months" until my next restaging scans. I want to see what further progression (more shrinkage hopefully - fingers and toes crossed) happens. I'll then do a complete round of scans and tests again and we can decide. I'm thinking to get the primary out (yes, get the alien out of me! ) as I do get some feedback that there is some evidence to suggest taking that out is a good thing to do. The question will be do we or don't we go for the lymph nodes as well.... 

Glynnis

Hi @elisewjk I had the lumpectomy and 24 lymph nodes removed when I was first diagnosed back in 2015, followed by chemo and radiation, I still have numbness in my armpit but am so use to it now I forget about it,  yes I got cording which my daughter sorted for me, now I have lymphoderma in that arm which is control by the presssure sleeve I wear 3-4 times a week, I was originally going to have a mastectomy done but changed my mind and I’m happy I did. Now I am stage 4 with Mets in my spine and pelvis on the same meds as yourself and travelling ok I think, descision will be yours to make at the time, all I can say is do what is right for you 😃