So scared of distant spread

Hi Kay1 

I am sorry you are going through treatment and worrying about your cancer metastasising. I think it’s a normal worry. The good news is that your CT scan didn’t show any evidence of spread. The chemo is intended to reduce risk by mopping up any stray cancer cells. I am guessing you will also have radiotherapy and endocrine treatment to reduce the risk of recurrence. No one can promise you it won’t come back but it sounds like a lot is being done to reduce the risk. I hope as time passes you will be able to sit more comfortably with this. 

Hi i understand completley and i could have written this myself i am currently having chemo for the same cancer as urs and it spread to my lymph nodes to , are u having chemo ?. It really is quite worrying to think what could happen but everything is being done that can be done for now and if we hadnt have found the cancer and gone to get it checked who knows where we would be , the good thing is that its treatable now and focusing on getting well is better than focusing on something we cant control .

Yes I’m be having radiotherapy and endocrine therapy as well. It’s just on my mind daily at the moment and I’m struggling mentally with it so much. The fear is just so real. I’m also having riboclib which is another tablet form which should help reduce reoccurrence. I just keep seeing people online that have had distant spread so many years later and you only know through symptoms you get. Hopefully one day there will be another test to check your body that they offer. 
going into a medical menopause at 35 is awful as well! I feel like the only people that can relate are you ladies on here as if I talk to partner of family about it they just don’t understand properly. Don’t get me wrong they are super supportive but it’s not the same as speaking to people who also have been through the same and have this fear

So sorry to hear this  yeah I’m half way through chemo, I have 6 more left to do. Have you had chemo? That’s very true about getting it checked. Mine was only found when I booked a private implant scan! I had no idea before! Went to the nhs the previous year for a bit of pain thinking it was the implants and they felt and examined me and said all was fine but wouldn’t scan me! I didn’t even feel the lump myself until after the private surgeon did! Just thought I may have an implant fold so was not prepared for them to tell me it’s actually cancer at my age! 

I'm glad I found your post as I'm always thinking about this!

Diagnosed in 2023 went through mastectomy, chemo and radiation as well as bone strengthening injections and phesgo, I'm sure there's something I'm missing!

Although Of course, I'm grateful for all of the help I've had and wonderful care, I am obsessed with these thoughts.

 Because I'm on letrozole the aches and pains mimic spread to bones so always on edge.

Ahh it’s so hard isn’t it! I think I’m going on anastrozole soon and I’ve heard there is lots of bone pains with that as well! Feel like I’m going to be that one that’s always going in and get tested! I may even have a private CT scan every few years but then even with that they say it’s too much radiation on the body and can lead to false positives and unnecessary biopsies! 

Hi!

How many nodes did you have removed initally? Did you have further lymph node clearance once the 2 sentinel nodes were found positive?

Ive had similar news today! The sentinel node removed is positive, so now its a decision to continue with/without complete clearance. It also needs to be discussed at MDT from which more advice/decisions maybe given. Help! 

I had one sentinel node removed when I had my mastectomy which came back positive and everyone was surprised. I signed the paperwork for clearance but then the team gave me the option to do chemo and radio instead and avoid another surgery. I had signed up for the research study so they knew more about my cancer and felt this would be a good option. 

Like you, the paranoia is there all the time and I am trusting in them. I had a liver MRI with contrast last week after a lesion was seen on a CT scan - i know it's probably nothing but the wait for confirmation is anxiety fuelling. I am half way through chemo and just want to be done. Good luck and sending hugs. X

Im 44 and i thought i was young to have this it seems to be happening more to younger people now and that isnt good . More research and support is needed into this . I had a mammagram 2 years ago and it was all clear . Now im in this position because i pushed it to the back of my mind it could be cancer , i had some pain but not in my breast just underneath i thought it was my bra causing the issue. I had menaupausal symptoms months before i found a lump,  hot flushes etc which masked what was going on , then a few months later i felt the hard lump and i knew it wasnt right . i didnt have to wait long . I knew they had found something so i had all the scans and biopsy done. I was having my first op 4 weels later , like u my plan changed due to finding it in the lymph nodes. So im now having chemo and half way through , i have 8 cycles and got to have 4 more im on 4EC and 4 pac . Which plan do u have and How have u been with chemo so far ?  

Hey! I had two sentinel nodes removed initially which both were positive. I went private for my lumpectomy and node removal and that surgeon recommend full clearance after but when I transferred over to the NHS for the rest of the treatment a different surgeon gave me the option to do full clearance or radiotherapy and he said radiotherapy has a much lower risk of Lymphoedema.

He also said they normally find when they do lymph node clearance (which by the way you think is full node clearance but it’s not and it’s just a block of certain level lymph nodes as they can’t actually remove every single one) turns out most people either have no more nodes positive or just a few. He also said he thinks in a few years time radiotherapy will only be used to clean up lymph nodes so I’ve gone for radiotherapy to there instead of clearance. 

Lymphoedema is lifelong and very common after full clearance and I didn’t want the risk of that and as radiotherapy can do the same job I’m happy with my decision on that. I’ll start that in a few months time after I’ve finished chemo. 

So sorry you are also going through this. What type do you have and what grade/stage are you?