Forum Discussion
PatsyN
8 years agoMember
Metastatic workup coming up next
I'm Stage IIIC and am 19 treatments into my 30 sessions of radiation. The day after I finish my 30th session I am going for a CT Scan.
Nothing unusual there I'm thinking as he hands over the referral for the radiologists.
After closer scrutiny at home - I don't know why I didn't see it immediately - in bold block letters is METASTATIC WORKUP.
I googled some trials on the value of even doing a metastatic workup and I fall into the category that definitely should, lol.
How common is this bearing in mind that no one expects me to be clear after radiation?
My nodes at every level were metastatic but not all were removed. My friend had a clearance of all her nodes and only 2 had cancer!
I wonder why I didn't get a clearance but an axillary dissection instead.
The invasive cancer even appeared along my scarline from my mastectomy just weeks earlier so they know it's rapidly growing.
The oncologist has already suggested more chemo but I didn't think I'd have to undergo a battery of tests to get the right mixture.
Guilty until proven innocent is how I feel.
(with all due respect to the ladies living with metastatic cancer whose group I'll probs be joining soon)
Cheers, I'm getting used to this, sometimes.
Nothing unusual there I'm thinking as he hands over the referral for the radiologists.
After closer scrutiny at home - I don't know why I didn't see it immediately - in bold block letters is METASTATIC WORKUP.
I googled some trials on the value of even doing a metastatic workup and I fall into the category that definitely should, lol.
How common is this bearing in mind that no one expects me to be clear after radiation?
My nodes at every level were metastatic but not all were removed. My friend had a clearance of all her nodes and only 2 had cancer!
I wonder why I didn't get a clearance but an axillary dissection instead.
The invasive cancer even appeared along my scarline from my mastectomy just weeks earlier so they know it's rapidly growing.
The oncologist has already suggested more chemo but I didn't think I'd have to undergo a battery of tests to get the right mixture.
Guilty until proven innocent is how I feel.
(with all due respect to the ladies living with metastatic cancer whose group I'll probs be joining soon)
Cheers, I'm getting used to this, sometimes.
12 Replies
- primekMemberOh Patsy. Such sadness around you presently. At least with breast cancer we do know treatment has come a long way...I hope to hear of your stories of riding your horse 10 years and beyond.
- PatsyNMember@primek Thank you so much for your lovely words.
We're all born knowing we're gonna die, they say that's what differentiates us from animals, who have no idea of their destiny (we wont go there).
But to be given a reminder, a time frame, a warning, is so much better than to be struck down in an accident where you never got to say your goodbyes or given the opportunity to appreciate how sweet life is when you know it wont go on forever.
I bought my horse some rope halters and leads from a facebook page last week. The woman who made them was a horse trainer who lived in Grafton. She was 52 and was diagnosed 12 years ago and has lived with metastatic breast cancer for the last 10 years. She is still riding, has a fantastic cover shot of her body tattoo to disguise her breasts (or lack of them) and was a great inspiration to me.
I'm seriously thinking a tattoo on the removed side, lol, the possibilities seem endless.
In the last 3 weeks 2 friends have revealed to me they have lung cancer, a 3rd has died from esophageal cancer and my former housemate of 5 years had a brain aneurysm and survived (without brain damage, that is). It's certainly taken my mind off 'me and my cancer'. - PatsyNMember@lrb_03 Thanks for the clearance/dissection terminology meaning. I shall add that one to my list. They went to level 3 and 3 out of 3 were metastatic. I'm Her- but it's a very aggressive invasive early breast cancer. My scan 2 years earlier measure my lifelong fibro/cysts as 3mm 9mm and 17 mm. In 2 years they'd grown to a total of nearly 10 cms!
- primekMemberIt used to be common practise after breast cancer to have minimum yearly body scans etc. I know my sister did this for 5 years and NED progression in this time. She developed pain shortly after and found to have bone mets. This helped me understand a little whilst those with earlier disease don't have this done as routine anymore.
I had metstatic workup at time of my diagnosis. Full body CT scan. Bone scan and breast mri looking for positive nodes. I didn't know this wasn't routine but they thought as I was her2 it could well be more advanced. I do know many ladies do have this and others don't, it varies. I didn't read my forms but expect that is what would have been written on them.
I guess they are being thorough to have you mapped as you appear now post treatment so they can see even minor changes over time. The pre treatment ones would be very different looking from surgery and radiotherapy.
I can't even imagine the fear as even at early stage we fear return. But do know ladies have survived your breast cancer. My sister lived a a good 10 years with metstatic cancer and saw all children marry and met many of her grandies. She packed a lot of life into what was left...as none of us know what is left.
Just wanting to send you a hug...I can't take your pain or fear...but will walk beside you whatever happens. X - kmakmMemberI am so sorry you're going through this. I can't add to the discussion but I'm thinking of you, and hoping for the best possible outcome. Hang in there. K xox
- Brenda5MemberHoping they can come up with the right treatment recipe to dong the cancer on the head and make it go into remission for a long time. <3
- Jen001MemberPatsy just letting you know I'm thinking of you and know how scary the word "metastatic: is in any form. Your answers can only come from your medical team, so hopefully you get clarification soon. Keep hugging your beautiful ponies.
Jen XX - jennyssMember
and Best Wishes from jennyss - SoldierCrabMember
Patsy I agree with the ladies above ask for a full explanation when you see your Oncologist next
- lrb_03MemberI think medico's sometimes forget we can read!
An axillary clearance and dissection are the same thing. As standard, they generallybtake all level 1 & 2 nodes. The reason they'll do this will be either a positive sentinal node, high suspician pf multiple node involvement or, as in my case proven positive nodes before any treatment.
As @Molly001 had said, ask your oncologist for a full explanatation. You deserve it.
Why do these things always happen before a weekend, let alone a four day weekend
Take care