Having just got over the latest scare with regards to lung/breathing problems - which thankfully seemed to be ok, here we go again. I have had swelling in the superclavical area for some weeks, but now very swollen right up to the jaw line. Urgent GP referal to breast clinic on Thursday, but GP seems to think it is probably further CA in upper lymph nodes. I had total lymph clearance , and 5 nodes to level 3 were affected, but the surgeon said at the time that he was unable to reach the supeclavical nodes. I did not have radiotherapy as I have severe reflux and was most concerned that radiotherapy would affect my oesaphagus if they radiated my neck, but I did have A/C chemo and Arimidex for 3 years.
Wish me luck girls. I think I know really what the outcome is and are completely prepared, but there is always the very sligth hope that the swelling might be due to something else. Can’t bare the thought of more chemo/radio etc. If it is bad news again, this will be my third bout with CA. Have any of you girls have had CA in this area and how was it treated?
Birgit
Hi Birgit
So sorry to hear about your latest symptoms.
I was diagnosed with recurrence in my chest wall and supra and infraclavicular nodes last April. Since then I’ve been on chemotherapy…first vinorilbine with xeloda, then xeloda alone and now on carboplatin and gemzar. Neither surgery nor rads were possible for me (no surgery because too many sites and no rads cause had it in that area before), and as my cancer’s triple negative can’t have any hormone treatments.
Hope you soon get a definite answer and can start making decisions about tretament. I’m really ground down with the treatment right now but at least so far the cancer hasn’t spread to major organs though I am due for another CT scan soon.
Good luck…and fingers crossed for an innocent explanation.
best wishes
Jane
Well I must say that I feel a bit of a fraud after reading many of the postings on this site, Ive had a recurrence after 5 years and mastectomy on left side 6 weeks ago I havnt had to have chemo, im supposed to be having zoladex and tamoxifen but afraid of the side effects as have read that osteoporosis is highly likley, my mother is cripled with it. Everyone seeems to be having all the treatment there is and hear I am worried about this stuff…dont know how I dare!!
Linda x
So sorry you’re having symptoms again, Birgit, and like Jane, I hope that there is an innocent explanation. My recurrence was under the ANC scar, so no helpful experience to share, I’m afraid.
Wishing you all the very best
Kathy xxx
Linda, just wanted to say that if you’re on tamoxifen, you shouldn’t need to worry about osteoporosis. It’s Arimidex and the other aromatase inhibitors which are bad for bones. Tamoxifen is actually good for them from all I’ve read.
Kathy xxx
Hi, thanks for reply, not taking anything at the moment as am having a bone density scan on 22nd April, however your comments sound encouraging
Linda x
Quick update, girls. Saw consultant in breast clinic and had ALL the tests done in one day - mammo (on remaining breast), ultrasound and needle biopsy. All normal - phew… All my lymph nodes are enlarged and I’ve got lymphoedema, but nothing sinister of any type has shown up. I do have Hashimoto disease (an autoimmune disease affecting the thyroid) and they think it is very likely that this is the cause of all the swelling in my lymph nodes - they even tested lymph nodes in my groin! I am on medication for this, but it’s not working very well at the moment, but once they get the dosage right, hopefully everything will fall into place. In the meantime I’ve been referred to the specialist lymphoedeam centre for massage treatrment on my neck and chest area.
Thank you all for your kind replies, and Jane I am sorry you are having such a rough time at the moment with all the chemo - hopefully it will ward of any further spread.
Birgit