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Watchful waiting concerns

7 REPLIES 7
Community Champion

Re: Watchful waiting concerns

Mishy, really sorry to hear of your trials and tribulations. This is just the disease that goes on giving!  Hubby had had a little heart procedure, and is back to his old cheerful self. We’ll pick up this month. X

Member

Re: Watchful waiting concerns

oops Annie something went wrong there 😨 was meant to read I hope everything is ok with your hubby and we have missed you at the group x

Member

Re: Watchful waiting concerns

Hi Annie weve missed you hope everything is ok with yourprofile and was wondering if your hubby 

Karen has been brill and I have had a couple of physcology apps which have helped massively my results showed some progression my medistanial nodes are swollen and I have a couple of new nodules in lungs 

Onco says not catastrophic and will be starting treatment soon he is fully aware of the anxiety watching / waiting causes and has explained why this was decided for me 

I will have a natter with you when I see you but thankyou Annie 🖒

Community Champion

Re: Watchful waiting concerns

Hi Mishy, I’m sorry to hear you’ve been going through the mill. Haven’t made it to our support group recently as I’ve had a lot going on with hubby. I would have thought Karen might be able to get a handle on things and help you a bit. There are two newbies  at Maggies who appear to be really on the ball. Sasha is seconded from ward 36,  and Deborah has a background in gynaecology. You can phone them if you can’t get in. I don’t have a BC nurse, so that’s my default position! I do hope you get some satisfaction, and feel more confident about your treatment plan. Good luck.🍀😘

Member

Re: Watchful waiting concerns

Thanks for the replies looks like il be starting treatments shortly waiting for some tests to confirm i can have a certain drug then its good to go x

Member

Re: Watchful waiting concerns

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

Member

Re: Watchful waiting concerns

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

Member

Watchful waiting concerns

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