Last Wednesday I had the MRI of my brain after a head CT had shown some enhancements. Well today I had a call and it has confirmed these enhancements are brain metastases, some are calcified with scar tissue so they must have been there for some time and responded to treatments I've had for my liver, lung and bone mets. Others aren't calcified so these are active. Apparently there are lots of specs as he phrases it, dotted throughout the brain, so these have been found by accident really as the purpose of the head CT was to see what was causing my left ear issue I.e tinnitus and feeling full.
Had a brief discussion with onc over phone because I'm now going to see him tomorrow. My recent abdomen/thorax CT also shows a bit of progression in the liver so the herceptin/perjeta infusions need to be switched. Kadcyla was mentioned but he sounds more keen on looking at a clinical trial for me which I was not expecting to be mentioned at this point since the herceptin and perjeta is my first line. He is phoning round colleagues he said in London and Manchester to ask if any trials available and suitable so that he can tell me tomorrow what he finds out.
I mentioned WBRT and he said it's a possibility but I sensed he didn't seem keen and I can't figure out why? Maybe I'm overthinking. This progression has blindsided us both I think as I'm not having symptoms apart from tinnitus.
Just to recap I'm triple positive and also on letrozole since September last year.
I've spent the last few hours researching options but its confusing, However I have written down some questions for tomorrow. Just hoping I come away with a solid plan. Feeling very unsteady at the moment.
Thanks for the update, but I am so sorry to hear that you did not get the results you were hoping for. It must be reassuring to know that you will be seeing your oncologist in person tomorrow. Hopefully by then he will have a clear plan of action for you. Please keep us updated on how you get on. The fact that some of the areas are calcified and have responded to treatment you have already had sounds promising. I hope the rest of the areas will also respond in the same way for you and that they will soon be obliterated.
I am sorry for your news, please know we are all here praying for you. My sister had brain mets and had WBRT followed by Kadcyla. I just assumed that was standard protocol even though this was back in 2015. This worked well for her with minimal side effects and clear scans for 2 years. After that she had Cyber Knife for new mets which were much smaller and more easily "zapped".
Caroline, I am so sorry you didn’t get the results you were hoping for. Your oncologist sounds pro active and you’ll no doubt have more answers after your appointment today. Thinking of you. Vicki
Lots to take in for sure! Your onc is brainstorming options and following today’s meeting a plan of action will hopefully put you at ease... Take care, sending you virtual hugs x
So sorry to hear about your results. When I was told about my brain mets two weeks ago my radiation oncologist said for many women this diagnosis stirred up the same emotions as their initial MBC diagnosis. The shock was certainly similar for me as, like you, I had no real symptoms. I’m also ER+HER2- so it’s much rarer. Mets picked up because I had a mass in the eye and the radiologist wanted a brain MRI “just in case”.
At that time the radiation oncologist said treatment was WBRT or the active surveillance approach: wait and see with a scan in two months. However, when I spoke to her four days later there were many more treatment options on the table. I think this was because she discussed the issue with my medical oncologist who knows me much better and didn’t even want to switch systemic treatment. I see him next week and will ask him about the WBRT versus other approaches. My gut feeling is that he wants to put off this line of treatment because of the possible side effects and the recovery time. I know there has been progress in treatment for ER+HER2+ brain mets in the US so maybe something similar is going on in the UK and your oncologist wants to tap into that.
I highly recommend Bestbird’s book (available as a PDF). There is a link to this in her reply to one of my brain mets posts, or reach out to her. I found it so helpful in understanding what might be out there.
Sorry you are dealing with so much, however I am sure once you talk to your oncologist you will feel better. You will have some choices as to how to proceed. Sounds like there are some treatments that will help. Thinking about you and wishing you well.
Dear oneI am adding more prayers to those already declared. On Sunday, I will be entering our whole group as recipients of the prayer group, there. I know that prayers, good vibes and positive energies work. They all helped me.
I'm sorry about the results Caroline and hope that tomorrow at your appointment you are given choices going forward. I don't know alot about this but am sending you love and keeping my fingers crossed for you xx
Dear Caroline,Prayers that God’s healing light surrounds you as you are about to begin new treatment. 🙏🏻🙏🏻 May He also provide calm and peace as you move forward. You are in the thoughts and prayers of many, dear one.
Thinking about you today! And your onc does sound good and proactive. I haven’t had brain Mets (yet) but I’m encouraged to know there are some many treatments out there, and with good results!
Dear Caz this has to be a hard time for you but there are many pathways for you and your doctor to explore to help turn things around. I have you in my prayers. Hugs Marlene
I'm so sorry to hear about your MRI results. Ugh, I had to go to a new Primary doc recently and I mentioned these very occasional migraines I've had over the last several months. She prescribed a brain MRI. Today I saw my oncologist and we discussed this possibility. Her - "I really doubt it, although you could get the MRI as a base line"... "but you would have headaches all the time if it was brain mets".
And now I read here of a couple of you with this diagnosis and not any pronounced symptoms?! Eeek, my headache gives me nausea but also the sinuses will feel sometimes stuffed up. Guess I better get that MRI "just in case"
I recommend getting the MRI. I have lots of little dots scattered through brain and my only symptom is tinnitus and onc still not convinced the brain Mets are responsible so he's said we've found them by accident which is a good thing. He's surprised that I'm so well considering what the scan shows. Even just for peace of mind, get the scan. Best wishes x
I think my fear of getting an MRI and if it were showing mets in the brain that it would greatly affect my outlook. These past 3 years I've remained overall very optimistic and that's done me good. I'm afraid of tipping that emotional stability on it's head (no pun intended lol). But you're probably right. I know I had reservations when I first hurt my back before my mets diagnosis. I convinced myself I'd stressed the vertebral disc, and it pretty much recovered. Then I hurt my chest badly, PCP suggested an X-ray to check, but again the pain went away fairly quickly and my oncologist said "the pain wouldn't go away that quickly if it was mets to the ribs" so we skipped that. Big mistake. 5 months later I had to admit to myself that something was still a bit off with my back and only then did I get a scan that found the mets. Long story short - probably best to make sure
I understand your thought process. Just having the MRI scan in itself and then waiting for results caused me high anxiety, almost worse than actually receiving the results. The way I'm now looking at it is, because some of the lesions are calcified so they are a bit older and scarred, then this might even be the first place my cancer has recurred to so the only difference is that I now know they are there and we can deal with them. My oncologist said it's far better to have found them now before feeling really unwell from them.
Your symptoms might actually be just due to treatment and stress etc...which will only get worse if you're constantly wondering whether it is brain mets.
Coincidentally, my primary care physician wanted to take me off Xanax so she replaced it with Trazadone. About a week later I developed severe tinnitus (listed as an adverse reaction in the literature). We stopped the Trazadone and now after a couple weeks the tinnitus is almost gone. My bladder neo has returned, so back to surgery in a few weeks. Hang in there, cazlav. Lots of support here.
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MRI Scans - changes in Mets
MRI Anxiety and Meniere’s Disease
Progression in brain 6 months after WBRT 😔
