Watchful waiting concerns

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hi everyone i was diagnosed with sbc TN jan 24th this year with nodules in both lungs an incidental finding following a cxr for pain in ribs they were very small 5 in all but 2 of them not 100% as too small to size my onc decided not to biopsy as the tn rarely changes status and the best action was watch and wait as being Tn can only have chemo and they were low volume

i had a stable scan in April  but last onc app 23rd may  i had a cxr which has shown possible nodes involved my onc said i need scan had this last tues see onc for results next thurs!!! Im absolutely terrified as also had brain scanned as been experiencing frequent headaches whibh i know could be through stress 

I literally feel like they are gambling with my life here 5 months i have had to endure this i have lost alot of weight again i think stress related i know having no treatment should be a bonus but im struggling massively with watchful waiting my mind is telling me are they not telling me something here because whenever i suggest something i get told not an option 

My onc has a very good reputation and im not suggesting they are not doing right by me i just feel so afraid that this could potentially go so wrong 

If any of you have been through similar i would love to here about it x

2

I haven’t experience this and hope someone comes along who has. I do have secondaries. The one thing I will say is I think it’s very unlikely that there’s anything they’re not telling you everything. The team where I’m treated tell me that they have to disclose all they know. Best wishes for appointment. I hope it goes well and you feel better when you have the facts x

3

Hi Mishy I don’t have TNBC but I would be concerned that watchful waiting has been the treatment plan for 5 months. Having said that your team is keeping a very close eye on you with frequent scans.

At your next appointment next week make sure you get some answers as to their thinking behind waiting, I find it helpful to write a list as the meeting can be a scary experience. You are quite entitled to a second opinion, even at a different hospital. Do you have a breast nurse specialist? They usually have more time to chat.

Wishing you well for your appointment x