Brain Mets Sisters
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emac, I’m sorry that the found brain mets but you know Mara and I have been there. SRS is stereotactic radio surgery and the Gamma Knife I’ve had 6 times is a type, Cyber knife is another. I did a pretty detailed description for the mods on the procedure, I think a search should bring it up. It might help to get familiar with it, so you’re better prepared for questions.
Bottom line is that those mets are few, small and treatable, which is a good scenario for a crappy new diagnosis.
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Thank you illimae. That makes me feel better. I was given the impression that these were treatable but yesterday just felt like the walls were falling in. I will look for that info. I think the brain mets diagnosis right after the diagnosis of the lymphangitic spread in my lungs was just a lot. It sounds like the treatments are going to go simultaneously.
I believe we haven't done new testing because the pleural effusions were too small to sample and I would imagine these brain mets are too. I will ask my MO about doing the bloodwork genetic testing for HER2 status. I think that's a good idea. Things could have changed since 2019.
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I'm not sure this is the right place for me to post, so please forgive me if I'm off base. My MRI with contrast shows T-1 hypointense lesion in the left occipital bone with enhacement, measuring 1.9 by 0.9 c.m., likely osseous metastic lesion, inner table is involved, however no extracalvarial extension or epidural extension identifed.
My questions are will this be a surgical situation or radiation? How close to the dura is the inner table? I have Pet scan Tuesday to identify areas to radiate as I was doing remarkably well until the inner cranial pressure and severe numbness took over. We all thought it was MS related. MO said this is bone and not to get upset, but that is easier said then done. Any input? Also, I had a ct scan and nothing showed up on that but did on MRI. Is that because an MRI is more sensitive to these lesions?
@illimae I want to thank you for responding to me and giving me strength and info to deal with this. You are an amazing woman and I just can't thank you enough for all the support you offer to all that need it. Thanks again.
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Emac, found a video online that might explain this better than I could.
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Irish, I’m not familiar with this location but my guess is that your team would want to try radiation, if possible being less invasive and still quite effective. If radiation is the plan, try to find out what kind, SRS (gamma or cyber knife, usually dingle session), fractionated (often a few sessions to a specific area or location).
MRI’s are common when trying to get a better look at something, I believe they provide more detail. Also, if your CT is like mine, it’s only Chest, Abdomen and Pelvis, which wouldn’t include your head.
You’re very welcome, I love helping out.
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Thank you Mara, that totally makes sense to me! I had just not heard of those processes referred to as the brain kidney before. I like that analogy.
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Emac, I had not heard of it until you mentioned it but youtube usually is pretty good about finding exactly what you are looking for.
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My mom had wbr back in October for Lmd. She tolerated well and has had stable scans. Her last mri did show 8mm x 8mm enhancement concerning for brain metastasis on her brain stem. We met with her RO and she was not convinced this was tumor but residual from radiation. She wanted to speak with the tumor board for recommendations. After meeting with the tumor board they feel she needs a pet scan to determine if it's a tumor or residual. I was hopeful and excited at first that this may just be the residual until I read that the necrosis after radiation can grow and be as serious as an actual tumor. Has anyone dealt with this? Trying to find input on things
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Hi @emac877,
i’m sorry to hear about your brain mets. I wonder how were you diagnosed. Was it from your regular screening? Did you have any symptoms prior? I have been having headaches latey and tingling on my left foot. I’m undergoing treatment for stage 2 BC currently and more than halfway to completion.
Thanks in advance and good luck on your treatment plan. Sending positive vibes..0 -
@kayeba I actually was really fortunate to have my MO's PA be really on his game that day. I was doing my pre-check for weekly Taxol and he asked about symptoms so I mentioned my eyesight had gone blurry but was thinking it was related to Taxol. He did a quick neuro assessment and I couldn't do that heel to toe balance thing without falling over or stepping on my own foot. I wouldn't have passed a roadside sobriety test completely sober. Aside from the eyesight though, I did not notice any symptoms. He cancelled chemo that day and sent me for a STAT MRI.
Interestingly enough though when I got the report it appears I've had one of them since at least September of 2022 and it was missed on the MRI I had done then. I was not having notable symptoms at that point except for mild dizziness when I stood up and it was so small it would have been easily missed.
In stage 2 treatment I would definitely mention the headaches and tingling. Those could be a side effect of the treatment potentially also and they may want to look at your drug regimen or watch for neuropathy. It also never hurts to ask about imaging if you have a concern. I tend to talk down my symptoms and try to rationalize them but the longer I'm in this the more I realize it's far better to ask early when you have a concern. Especially during treatment. Sending virtual hugs and positive vibes your way also as you are going through treatment ❤️
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Emac877, thank you 🙏🏽. I hope things are going well for you. Being new to the community, I missed the notifications hence replying just now. It doesn’t help using my phone so I will try to use a laptop instead…
I had brain ct scan (went to the ER for that), it was clear but I am questioning how reliable ct scans are. I am thankful though that it was clear so it silenced my turbulent mind for a bit at least in that area…
Currently, I am struggling getting the tests that I need for my right upper abdomen pain. Back early this year, right before I had an official BC stage 2 diagnosis in May, I had been complaining of the discomfort. I had an ultrasound for it which showed calcified granuloma on liver. Come May, when I got my full body scans for BC, the calcification showed on my lower right lung lobe accdg to the report, which is close to the site of my discomfort (liver). I am pretty sure it’s on the liver not the lung. I have been mentioning this to my oncologist but it’s always dismissed as not mets, especially when I had a CT scan and ultrasound on abdomen recently which did not show any issue with my liver. I can’t be making up the discomfort, especially that it has gotten worse after I completed my AC+TH regimen. I am four weeks off of it.
i am not following this up but my MO and family doctor are tossing me back and forth. My doctor ran my bloodwork which showed evrything is normal accdg to him except for an elevated B12 (1475) and a slightly elevated Ferritin as what I could see on the report. I am not taking vit B12 supplement at all. I am really hoping for more test such as an MRI. I am in Canada and MRI isn’t requested too often (I heard it’s expensive). I am going to have my surgery next week but until now I am not too sure if I am really stage 2 or misdiagnosed. discomfort is now extending to my back close to my right scapula and started to feel the same on my left side where my pancreas is. I am struggling to get this figured out soon and I really hope I can get answers from my medical team.
Sorry for the very long post. I’d appreciate if anyone can pitch in. Looking for anyone as well in Canada who’s struggled getting diagnosed, BC related or not.
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Kayeba , this post have been placed in "metastatic only" group.
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Well, I got some mixed results from my MRI. The good news is that the mets in the left frontal and left occipital lobes shrunk from 8mm to 6mm and 6mm to 5mm respectively. The one in the left cerebellum shrunk from 9mm to 4mm and right cerebellum 6mm to 3mm. So about half on all of them. Unfortunately I have two new lesions, both about 5 mm in the left cerebellum. So I don't know. I have been sick with vomiting and weakness for about a week and these results knocked me back a little. I re-read some of your posts to encourage me. I see the RO on Monday so I am not sure if I have more SRS coming or what he might suggest. We shall see.
I have noticed my balance is terrible. I have never fallen but I get dizzy and when I walk I'm definitely a little wobbly but seem to be able to self correct okay. My thinking is not okay at all. I have very short memory right now and don't seem to be able to plan things out the way I used to. I'm only 3 weeks off weekly Taxol and so that may be playing a factor in that also. I don't know. I'm going to sit down today and write my list of questions and then write down what the doctor says so I can remember later.
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Well, crap, emac. I'm sorry for the new lesions and issues. I like the idea of writing down your questions. I forget to do that, especially to note WHEN something started. It's embarrassing to be asked when something started and to have to answer, "I don't know. A while ago? A few months?"
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Emac, when I’ve had new brain mets pop up, we usually do another gamma knife rads, unless they’re too small, then watch and wait. At MDA, they don’t treat mine under 4mm. Good news on the shrinking Mets though. Unfortunately, brain mets are often a game of whack-a-mole.
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emac, forgive me if I've asked this already, but do you get routine MRIs? Are MRIs the best way to detect brain mets?
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Dear sunshine99 - yes, to my knowledge MRIs are best way to follow brain-met situation. Hugs,
Saulius
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Thank you, bsandra. I will follow up either with my MO or the neurologist. Today is my endo procedure. "endo" is short for - are you ready?
ESOPHAGOGASTRODUODENOSCOPY, FLEXIBLE, TRANSORAL; WITH TRANSENDOSCOPICULTRASOUND-GUIDED INTRAMURAL OR TRANSMURAL FINE NEEDLEASPIRATION/BIOPSY(S) (INCLUDES ENDOSCOPIC ULTRASOUND EXAMINATION OFTHE ESO
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Mae you were right, I am going to have another session of SRS done to the two new ones. I now have three in the cerebellum and am noticing my balance is off. Not so bad I can't walk but enough off kilter to be annoying. I have the scout scan on Monday and we will go from there. I had kept my mask so we won't have to do a new one of those. LOL. I'm not sure what I would do with two of them.
Sunshine99 I didn't routinely have MRI's until I had symptoms of brain mets, in my case balance issues. Now I follow my RO's advice and it has been at a 3 mo. interval since discovery and my first SRS. Once they are stable he may start doing the MRIs farther apart I would imagine.
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Posting for my wife who is slowly but surely reading every page in this thread. It’ll be a while before she makes it to present day.
She was diagnosed with TNBC in Jan 2023. After chemo, surgery and radiation, she was declared pCR. A chance set of scans led to an MRI request and now we’re facing the new reality of her being stage 4 with mets to brain. The largest tumor was almost 2 cm. There were another 8-10 small mets found. She had a craniotomy yesterday to remove the largest for testing.
Once she’s healed from the surgery, she’ll begin WBR after Thanksgiving. We’re hopeful that the tumor may have traces of HER so treatment options expand. However she’s preparing for the worst if that’s not the case. We’re considering a trip to MD Anderson or Sloan Kettering for a second opinion. Our cancer center is above average, but we do want to explore clinical trials and make sure every option is exhausted.
She is currently symptom free, but we are terrified of the future. Our daughter is only 16 months old so there is very much for my wife to live for. I don’t have any questions, just wanted to say that the club has another member and she’s fighting hard.
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Welcome igloo, will you wife’s HER2 status be checked before WBR? If she’s HER2 low, she might be able to do Enhertu and save the radiation for later. I go to MD Anderson and can tell you that they’d probably try that first, especially since there weren’t a lot of tumors. I also had a craniotomy a few years ago, such a scary surgery to face, I hope she’s recovering well.
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Thank you Illimae, thats a really good point. Of course, it depends on the anatomy of the lesion, but it would be great to have an alternative to WBR from the get go.
My wife’s oncologist is gone for the Thanksgiving holiday next week, but i’ll see if Mrs. Igloo would like to message her before the week ends to consider options.
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My sister had brain mets. The location was too deep so all they could try was gamma rays which didn't work. She taught kindergarten, but eventually had to quit because she couldn't remember where she put stuff and the kids had to tell her. First, her oncologist told her she should only drive locally and remember red means stop, green means go. She had to stop when she started getting confused. Now I have BC. So far only one of 3 positive nodes, coming on 2 years.
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Igloo, I never hesitate to message my doctors if I have a question.
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I have brain mets, lots of tiny ones. So far Verzenio is keeping them stable. WBR is probably in my future. Good thoughts for you and your wife.
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Igloo - A year and a half ago, I had a 3.5 cm tumor removed surgically and 21 small spots treated by SRS. Since then I have been on three chemos, including Enhertu, which had just been approved. My onc had predicted that I would need whole brain radiation at the time because of number of mets, but the radiation onc said they could do SRS. Glad you are considering a second opinion. I have been essentially brain stable since that time and no brain deficits whatsoever.
There’s a helpful website at mbcbrainmets.org.
Recovery from craniotomy was much easier than I expected. Sending best wishes.
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Thank you all so much for your feedback. We’re meeting with the radiologist on Monday and will finalize a treatment plan then. Still waiting on the pathology report from the surgery as well.
The waiting is truly torture. I wish we could just forget and live like we used to between appointments, but I know those days are gone. Good luck to each and every one of you.
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igloo, waiting for the tests, then waiting for the results is, indeed, so very hard. I wish you peace during the waiting and hope for "good" results.
Carol
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Emac, I know I am behind but am sorry to hear of extra mets and their effect on your balance. I would suggest walking with a cane to help secure balance, I had to post WBR in 2016 and am now using one. They feel much better for me and my balance. Pretty cheap or there may be places that donate them to people.
Igloo, I had a 10 cm brain met removed in 2016 and whole brain radiation after. It was a hard road during treatment, not going to lie but this far down the road for me, my life is pretty normal for me. I walk with a cane but that was because of a couple of falls that scared me off walking, working on exercises to prevent falling, I have only fallen 3 times within the past year, two due to ice last winter. What I am saying is no reason to expect or worry life will never be a more normal time, move your body if possible, keeps mood up, healthy food you can tolerate and no google about brain mets, survival rates etc. You may find adjustments are made in your life to do things at start of day, know that once brain is treated, it may take a bit but your brain will function more normally, do crosswords, word searches and read when able. Those help. Write things down as well, short term memory can be affected but easily managed. I am sorry you are dealing with this, one foot in front of the other, meditation like on youtube can also relax nerves and deep breathing too. Biggest thing, stay active, even if it needs to be from a chair.
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Mara: thanks for your reply. I’ve been reading the old pages of this thread (up to 189!) and your story is so inspiring. I’m posting for my wife, who is also reading the boards.
She’s largely recovered from the craniotomy that was a week ago. The sample they took remained triple negative like the mass in her breast/lymphs early in the year. There was nothing in the report to indicate if she happened to be “low” in HER2 receptors which I had been hoping for to potentially let her try Enhertu. Still holding out some hope for more diverse chemo options. TNBC stats are scary, but each case is different and this was caught early, so we shall see.
10 days of WBRT will begin on Tuesday and it can’t get here soon enough. Hoping that my wife can stay symptom free until the radiation takes effect. The internet seems split on the effectiveness of WBRT, but its clear from people like Mara and Susaninsf that it can work. We just want my wife to have as much time as possible. The more, the better.
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