Forum Discussion
Recurrence in lymph nodes
Hi everyone,
I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018.
Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!!
I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason.
Worried and sad, but trying to be strong.
Sally
I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018.
Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!!
I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason.
Worried and sad, but trying to be strong.
Sally
68 Replies
- SO sorry to hear this, @sallylovestosing. Deep breaths. Try not to over think the PET - fingers crossed it is contained.
Big hugs to you and hubby and your family xxx - @sallylovestosing I am so sorry to hear your news! I had a recurrence in the same spot in the breast 4yrs post treatment. I did chemo in 2015, am now 4yrs clear and doing great! How are you going? It is devastating, to be hit with a recurrence is so difficult. So big breath and know there are many positive stories. Hang in there. M x
- Sleep when it's dark. Best idea. Ever. It's funny how you find the silver (or not so shit covered) lining, and you are right. If you've got to have fucking cancer, here is the place to have it. No health care system is perfect--and it would be absolutely splendid if someone could figure out a way to cure it--but we have the best chance in the world of surviving. Fingers crossed, in fact massive contortions, for Monday. Mxx
- Oh FFS....and more waiting. We are all gutted for you. But on you go.
I saw this and thought it apt... - Oh bugger. Just remember I’ve been there and am still here. Hang in there. Good luck with all the results and it does sound like yiu are trying to keep busy.
Hugs
Paula. Xx - Hang in there. As my psychologist says, no preemptive grief! I hope you both have some good distraction planned for the weekend. Big hug. K xox
- Hello @sallylovestosing
Devastating news for your and your family. Dont hesitate to call our helpline if you would like to speak with a nurse for information and or support on 1800 500 258. Fingers crossed that the PET scan results are clear. It will be a relief to get a treatment plan in place, wishing you all the best. - Well bloody hell! Biopsy showed the same TNBC in the lymph nodes - got the results from my surgeon on Monday. Had a PET scan yesterday, so once again waiting for news on Monday to see if the little blighter has gone anywhere else. Darling Husband being very brave, but caught him having a little weep at 5am today. As he said, it does kind of suck when the best case scenario is "only" another dose of the same aggressive cancer you've just spent thew whole of 2018 fighting - with more surgery/chemo/radiation on the horizon. On the other hand, it could be worse - at least I'm in an Australian city with a great healthcare system and private health insurance - also a loving family and friends and a supportive employer. Silver linings eh?
Also played tennis before work this morning with some nice people, and get to visit my mum for the weekend - am trying very hard to make each day the best it can be. Slightly all over the place emotionally - brain like a cloud of gnats. I find it's much easier to look on the bright side first thing in the morning, when I'm energised, than it is in the wee small hours. My tip -sleep when it's dark!!! - Thanks Giovanna! The radiologist ( a fabulous, sensible woman of course) was so lovely and made the decision to "upgrade" the procedure from an FNA to a core biopsy, so that the pathologists would have a better specimen to work with and we'd have more infor from the start. Happy with that. She said the likeliest result is that is is more of the same (orginal cancer), but also that she is a sceptic from way back, having seen way too many unexpected results now!
So anyway, roll on Monday, when we will know what we're dealing with - in these nodes at any rate. - Hello @sallylovestosing hoping all went well with your fine needle procedure. Its so nerve wracking waiting for results. Try to keep busy, all the very best.
