Hi. I’m new to the forum having been diagnosed with invasive lobular breast cancer on 30 Jan. WLE and SLNB on 21 Feb.
SLNB show cancer in 1/5. Options now are radiotherapy or further lymph node surgery.
I’m confused. I just want this BC removed. Has anything else faced a similar situation- how do you know which option is best?
Thanks
Hi there. Sorry to hear your diagnosis.
I was told my slnb was positive this week too. However I wasnt given any choice, perhaps because only one node so 1/1 positive. I have to have axillary clearance on 19th March. Possible chemo too.
Personally, if I had a choice I would have chosen radiotherapy as there is a smaller chance of lymphoedema. Have they gone through all the pros and cons with you? Perhaps talk to your nurse? The fact that during your slnb they took 5 and only 1 was positive is very good.
Difficult decisions but you will make the right one. Good luck x
Thanks @bluesatsuma. I have asked for more info on pros and cons. There was a lot of info to take in at the consultation. I think the axillary clearance provides better info but as you say, a higher risk of lymphoedema.
I have been reading on the effects of radiotherapy - and that doesn’t sound very pleasant either. Oh to be a woman!
Yes its a tough decision. Try and look on here for similar posts from last few months. I’m surprised more people havent spotted this and replied but sometimes more active threads seem to be higher up. X
Sorry to hear that firstly. I would throw everything at it. My own view is get the cancer out of your body even psychologically if there is an affected node with axillary clearance surgery.
My own story was an MX two years ago after DCIS and following this they found 5mm of IDC. No chemo as oncotype didn’t even register. Roll on a few years and have had a full axillary clearance after one node being discovered (despite the chances being really slim). And I wasn’t given an option, path is surgery + chemo + radiotherapy.
Lymphedema is more manageable these days and you still only have 20% chance of getting it! For me it’s all about removing the cancer and fighting against another recurrence down the line.
Surgery is tough but manageable but big thing was I couldn’t wait to get that node out of my body.
Good luck with whatever you decide! X
Hi pinkisbetter
I had ILC tumour, 11mm. I chose a thorough double mastectomy for myself (mucinous cancer simultaneously in other breast and strong family history).
The 3 tested sentinel nodes were clear, BUT my surgeon spotted a more distant one during surgery that looked dodgy, so he harvested that for the path lab. Came back positive with extracapsular spread (next up from macrometastasis, as it suggests). I was given the option of zapping the area blind with radiotherapy but (I again) chose axillary clearance because I wanted visible evidence of how bad things were. As it turned out, of the (only) 9 nodes found/examined, none of these were affected (so, 1/13). That was the good news, but then I did go on to develop lymphoedema, just 6 weeks later.
(As this had already happened, I couldn’t guess if the 5 days worth of ‘belt and braces’ radiotherapy that followed for the breast tumour, would have caused it or not.)
Do I regret my decision to opt for the axillary surgery? No. To me, it was a no-brainer. I had to know.
So, as much as I felt so gutted and sorry for myself re unnecessarily (as it turned out) developing lymphoedema (more so, in fact, than the cancer - which I had kind of been expecting) … it was yet another thing to carry through life … at least I knew there wasn’t any further spread through the nodes. (Lobular is so unpredictable.)
The lymphoedema was in hand and lower arm mainly, tight and puffy in whole hand and lower fingers. I went through some sessions of manual lymph drainage massage, had heavy strapping for a week, tried an amazing variety of compression garments, stuck with just a couple of the most effective and finally bought myself a £1,000 LymphAssist “Hydroven 12” machine by Huntleigh Healthcare (pneumatic inflatable sleeve that delivers a 35 minute programme of sequential pressure along the arm to encourage lymph movement/drainage). With the combination of intermittant compression garment (I’m a slacker) and nightly pumping (religiously), the excess fluid has dissipated greatly. The very slight residual puffiness is barely visible. Occasionally it increases a bit, but can be encouraged away again. I know this can get worse over the years but I’m hoping not, if my body is learning how to deal with lymph along a different path. 16 months on from axillary clearance and I’m doing well on little effort.
The 5 sessions of radiotherapy, for me, was a breeze; hardly even tender. (If you go down that route, I strongly recommend looking at the RESPIRE website for demonstration and practice of ‘breath holding technique’ a couple of weeks beforehand to help minimise lung/heart exposure, especially if targeting left chest wall.)
My oncotype DX score let me off the hook regards chemo.
Of course, no 2 people have exactly the same experience of all of this. I just hope my story gives you more data to weigh up. Wishing you the very best of luck. x
Hi Misty K,
Hope you don’t mind me jumping in here to ask you for some advice. Thanks for your post and sorry to hear you are affected by lymphedema but sounds like you have done a lot to help minimise the effects. I too would prefer the nodes out and checked so even though it’s really bad luck to get it your own piece of mind is key and what works for one person might not for another. I am two weeks post clearance op and worried that some of the tingling arm effects are the start of this. Is there any extra advice you have to prevent it happening? I feel like it’s one of those things that will happen regardless but thought it was worth asking anyway. Thanks in advance x
Hi SL255
Happy to help if I can.
I don’t think I had any sensations in advance of lymphoedema that were specific to its onset.
Having had a double mastectomy and then the axillary clearance (left side only), nerves had been cut, damaged and generally disturbed, as is to be expected. As they try to repair (and some do recover), there are all sorts of weird sensations - tingling, prickling, electric shock sensations. What was most peculiar was a combination of surface tenderness and a deeper numbness … in the same spot. One of my nerves now registers a sensation in my chest when I scratch my upper arm! So as each surge of nerve repair kicks off, and it is an intermittant process over many months / years (I’m 19 months post surgery now) new sensations spark into life. Be prepared for anything on that score.
Also, I had cording in both arms for a short while. That’s when every time you stretch your arm out there is a painful pulling that can extend from wrist to armpit - also due to nerve disruption. I managed to kick that into touch by religiously doing the stretch exercises (issued to you post-surgery) at least once or twice a day. Took a couple of weeks or so to ease off and eventually disappear. And keep doing them for months to keep flexibility going. I still do them occasionally now.
With regard to the feeling of impending lymphoedema, I have read quite a few posts where people have described a heaviness, achiness and tightness. I didn’t get any of those in advance of visually noticing the puffiness and the tight bloating of my hand and wrist. As far as I can remember (and things do just all blend into a bit of a blur eventually) I think I assumed up until that point that it was just general swelling from surgery.
So unless there is any obvious fluid retention, I would assume it is just the start of your nerves coming back to life.
Fingers crossed 
and Good Luck with your overall recovery. x
Sorry - PS …
I don’t think there is anything one can do to prevent lymphoedema developing as such because it is due to the physical pathways of the lymphatic vessels being cut through and cut off. But on this point, you should check with a BCN that I have got that right !
Thanks everyone for sharing your experiences. I have decided on further surgery which is in 3 weeks. In the meantime, I am doing the stretches everyday and reading up on lyphoedema.
I have been told there will be drains in the wound after the axillary clearance surgery. I’ll check other forum posts for info on surgical drains.
xx
Thanks MistyK and I agree I think the exercises all well and good but it’s internal nerve system that will dictate in the end! Thanks for all the great info.
Also @pinkisbetter I think surgery is the safest course. I had one drain which protects against infection. It’s not that bad at all and can be tucked into jeans. Once the fluid is below 35mls over 24 hours they will take it out. They will give you gentle exercises to do and do take the pain meds. One new tool they have in the fight against lymphedema is a machine that measures your fluid before the operation. This sets a baseline so that on next physio appointment after the operation they can see more than the naked eye can and look to see if your fluid has increased. So worth asking if you can be measured for this in advance.
Surgery takes a while to recover for sure but it is a great feeling knowing that there is less gateways or lymph nodes to end up with more cancer and I feel is very much worth the effort. The very best with the surgery xx