Hi,
I am looking for some support/advice on the situation I now find myself in! Last Feb I found a lump in my neck (after being five years clear of DCIS and 5mm invasive had double mastectomy and rads and tamoxifen).
I was found to have four nodes in neck, eight around axillary areas and one or two in internal mammary chain plus small area on sternum!! So not great news!!
I am being treated at MD Anderson in Houston USA as we are here on a work contract. My oncologist put me on weekly taxol (which I tolerated for 13 weeks and I’m now waiting to have maybe last FAC (no 8) in a couple of weeks.
I had scans last week which show that everything has shrunk significantly which is fab. The sternum is healing and they are questioning whether some nodes were malignant in the first place. Obviously this is great news and my youngest son (6) announced to the whole class ‘my mummy’s cancer is going’. However I am now faced with a decision about what to do next. They are advocating that I have a full axillary clearance, removal of superclav nodes and perhaps a sternectomy followed by rads.
I am really worried about the risk of lymphodema and they cannot definitively say what my chances are of getting it and as the docs say my situation is very unique and they have no case studies of chemo and surgery v chemo and rads etc for prognosis. I know they are treating this aggressively as apparently I am ‘young and fit’ (46) and have a young family. But it is difficult as I really don’t know what to do – I’ve come this far really focused but now have to trust a number of docs again. Any advice/experience would be great as I am really at a loss and so far from home!! – thank you!!
x
i guess if your main worry is lymphoedema then maybe you have to weigh up whether living with lymphoedema would outweigh progression of the disease but without LO… i know thats quite a harsh decision and no guarantees that either would happen… eg you may never get LO or you may get it and still proceed to disease progression… also will they be able to surgically remove your subclav nodes this is rarely done as they are so close to large vessels and nerves.
my story is slightly different to yours… hormone pos grade 1 BC at 37 in 2006 treated with surgery rads and tamox. new primary bc in other side at 40 in 2009 this time TNBC grade 3 treated with surgery e-cmf chemo and rads… then aug 2011 age 43 recurrence of grade 3 tnbc in inter-pectoral lymph nodes on left side… surgeon was keen for surgery and rads onc keen for surgery and chemo… team decided chemo which i was happy with and also being referred to discuss rads… they think nodes were probably involved at diagnosis in 2009 as there was signs it had reduced and regrown so they think it responded to my last chemo so felt another zapping was probably a good idea… first of 6 tax and carbo was yesterday and doing ok today despite having a reaction when tax went in.
hard decision but might be worthwhile calling the helpline for their input or going back and speaking to your consultant.
Lulu xx
Hello,
I was diagnosed in 2003, aged 31 and had a mastectomy, axillary clearance, chemo, rads and Tamoxifen. I then had a regional recurrence in the sternum in 2006 which was treated successfully with rads, oopherectomy and Arimidex. I got mild lymphoedema as a result of treatment, but this has been managed easily and brought under control. Now, five years later, my routine annual CT scan has picked up progression in the site of the recurrence. I’ve had a bone scan which was clear and am now awaiting the results of a more extensive CT scan which will tell me whether or not my organs are clear. If they are, my onc has said I could have an op to remove the sternum.
I know that no two cases are the same and clearly there are many differences between our cases, but I would say that lymphoedema, though a serious concern, is not life threatening and can be easily managed, particularly when the awareness is there from the outset. My feeling is that we should throw everything we can at this disease and manage the side effects as best we can for as long as we can.
I hope this helps you arrive at an informed decision which is right for you. Take care, Angelfalls xx
Hi Abbey!
I think I wrote to you when you were on here before. Pleased that the tx is working for you. I would def. have the surgery. I had axillary and supra-clav mets dx last Feb '10 aged 42. Had chemo, which worked a bit and then rads which put me at NED last Autumn and holding! Anyway, my point is that the rads have worsened my pre-existing (since Sept.09) lymphoedema and it is quite severe now, but stable, I think. So, avoiding the op. would not guarantee no l.o. I’m sure many people have developed it after primary surgery and rads too. I would go for the op. and manage the l.o. IF it occurs. I had my first dx in Dec 07 and only developed the l.o. after a strenuous and very foolish bout of shovelling! So, if you are not silly like me, you may well be OK. All the best to you and your family,
Sarah x
Abbey I think you should do what Anderson suggest.
Reasons:
(1) Better safe than sorry - you can live with Lymphoedema, but progression could ultimately kill you.
(2) Anderson know what they are doing. Their survival rate for stage 4 is twice what it is here in the UK.
(3) There is evidence that surgical removal of mets in the sternum is beneficial (strangely enough, the sternum seems to be the only area of the skeleton that benefits from surgical intervention).
You are a very lucky lady indeed to be treated at the Anderson,so take advantage of it.
Thanks for all your advice guys! It’s so good to hear all your supportive comments. Had my last chemo (21) in all since last Feb!! Yesterday so feeling a bit crap…
Oncologist pleased with PET scan everything shrunk sternum healing and there is minimal activity and he is questioning whether some nodes were ever malignant!
I’m seeing the surgeon and thoracic surgeon on Thursday to decide on surgery. They do remove the nodes in the neck area supra and lower clavicle area. Oncologist questions whether I should have surgery v radiotherapy but like he says they all have their own opinion. He is suggesting an MRI of my head to check there r no tiny tumours - but I’ve drawed the line at that! I’ve just had a full body PET scan and that was stressful enough. Can anyone tell me how long recovery from surgery was? I’ve got 3 kids and need to be up and running ASAP!
I’ll listen to what they say on Thursday and then I will be back on here with more worry and concerns!!
But in a moment ok madness I have signed up for the Avon. Feast cancer walk next April here in Houston - 60km - so have to get fit for that!
Thanks so much
Abbey xxxxx
hi
Just wanted to update that I had a partial sternectomy and axillary clearance and removal of clavicle nodes on the 5th Dec. Ten hours of surgery with three surgeons - but its done!! So far results are out of ninteen nodes in the neck area only one was dubious and three out of twenty five in the axillary area. They removed the area of the sternum and got clearance. I’m seeiing my oncologist tomorow and they have orangised for me to see the radiotherapy team in Jan.
It is a massive op but I feel lucky that it was offered to me. Now just got to get myself fit!! My arm is very sore and I can’t lift it too well but I’m sure it will improve. I’m hoping they will remove my last drain tomorrow - for Christmas!! Trying not to worry about potential lymphodema and be happy with results so far. Wishing you all a happy christmas from across the ‘pond’!
Abbey glad your through your op… Sounds like a bit of a Marathon but I’m sure you will get lots of benefit from the surgery now all the nasties have been removed.
Good luck with your appt so morrow and hope you do get that drain out for Xmas.
Merry Christmas
Lulu xxx