Talk me out of thinking I have brain Mets

TurboKitten88

Sigh. I hate to be this person.

I have been doing well this last year Mentally. It took a year but I haven't even thought about cancer all the time. Diagnosed 8/2017 with stage 2 idc TN. Chemo, lumpectomy radiation finished 4/2018. So just over two years out from treatment.

I have never asked to go in early for a check up due to any symptoms. I have always followed the three week rule and normally everything resolves in less than three weeks.

The last 7 weeks I started getting dizziness on and off. The first couple weeks I thought maybe I'm getting a cold or need to drink more water even though I do really well with that. It's started getting worse. It's anytime I look down and back up. Or even side to side most times. And then today I almost blacked out standing up. I was also able to lose 20 lb really easy which is just not normal for me. Night sweats on and off are also bothering me. I have a few other issues but I'm of course not sure if anything is related.

If you have any type of mets what was your symptoms?

I called to move my normal check up up and the nurse was like “well I will have to see what the doctor wants to do. If you don't hear from me in a week call me back and check in." I just feel like they think I'm exaggerating maybe? Or they just see so many people with basically ptsd after cancer that they don't want to jump in and do a bunch of tests? Idk. I feel sad. It kind of hurt. I trust them for my care and I feel like they don't care now.

I tried to see my general practitioner but they stood me up on a video appointment and I'm not going to use someone who can't be kind enough to call me.

So if you stuck with my crazy this long. That's where I'm at. Send help

edit to add: my oncologist was concerned enough to find time this coming Tuesday to fit me in and I am so grateful. Will update after. 🌈

Edit 2: brain mri set for Monday 8/31, mammogram set for 9/1

moth

it could be so many other things - hormones, blood pressure, thyroid, kidneys, all come to mind. But bottom line is with these symptoms I'd want to see a Dr. and do at least basic investigations like thorough blood work.

I went to see my GP first because I'd technically been discharged from the oncology practice when my symptoms started but your situation might be different. Maybe call the MO back and just firmly ask to make an appt. Or give your GP another chance? I'd go to whoever can get you in sooner and start investigating these symptoms. I do think they often want the GP to start because usually it turns out it's another medical issue and not to do with oncology.

AliceBastable

Definitely follow up with your MO, but some of your symptoms with the dizziness sound like benign paroxysmal positional vertigo, which I had several years ago. There are several easy ways to treat it, by an ENT doc, if tests rule out brain mets. Your other symptoms sound more problematic which is why you need to see your MO. Remember, you can have more than one thing going on in your body at the same time.

TurboKitten88

@moth and i know you are right. it totally could be. I thought about blood pressure and have been monitoring that and have not had any low or high reading. So that was good. I dont know that i have technically been discharged from the oncologist as due to my age they wanted to "watch me closer" for the first five years out from TN but now that i have a issue they didnt even seem to care I messaged back to my gp so i guess i will see if they will still do a phone visit. I get that i cant go into oncology for just every little thing. This just doesnt seem little to me or like something i want to mess with. Im ok with getting some testing or scan and them being like you know what its nothing. That would of course make me feel better. But if this gp wont see me then i will just find someone else. I hate that i feel so unimportant to everyone right now.

@AliceBastable i have never heard of that and i looked into that and it does sound like this could be the cause of the dizziness. I hope someone gets back to me today so i can start on the way to getting to feeling better. I just hate feeling like this. I just feel unwell. Thats so vauge but its the truth.

Thank you both so much for the imput. I feel more calm in my mind today. Symptoms are not better but mentally im feeling better

kathabus

Hi--I wanted to say that when I heard your symptoms I thought of paroxysmal positional vertigo, as well. My mom had it and it got increasingly worse until she fell down one day. And it was that inner ear vertigo. With history of breast cancer, though, it's not unreasonable IMO for your MO to investigate these symptoms. Nothing wrong with starting with the gp, either, to get the ball rolling.

I understand your feelings. I was cool, calm and collected during my whole diagnosis and treatment. Never asked for more than I received. Trusted my team. But when we found a bone lesion, I very badly wanted a 5 minute conversation with my MO to discuss the results and all I got was the nurse call saying....what do you want to do....wait and see or do a biopsy. I felt what you felt. Like, for crying out loud....may I speak with my doctor so that I can get some educated guidance please? I wasn't calling with a headache. I decided to do a biopsy....it turned out to be benign...but I will always remember the time that I really needed to talk to her, and she wasn't there. I've moved on. You do have to move past it....put feelings aside and just advocate for what you need during the times that you need help. Good luck to you.

GlobalGal

Dear Turbokitten88,

Some years back, I suffered from benign paroxysmal positional vertigo--and, there was nothing benign about it!

Mine was so terrible I crawled around on the floor for 6 weeks because I was so dizzy. Turning over in bed made me nauseated. Driving involved one hand on the wheel and one holding a barf bag. I drove my kids to school and then climbed into the back seat where I slept until they were dismissed in the afternoon.

The medical world is not particularly impressed by this life altering condition.

I wish I had know about these head maneuvers, which could have saved me much unnecessary suffering:

Some signs and symptoms of BPPV:

https://www.youtube.com/watch?v=PcINJ7p09-Y

Epley Maneuver (skip ahead to 5 minutes):

https://www.youtube.com/watch?v=KzLWOX770i4

Good luck!

GlobalGal

illimae

I agree that there are many more likely and benign causes but as someone diagnosed with brain mets without symptoms, I always recommend knowing for sure if your honesty suspicious. Now, I don’t advocate outright lying but “claiming” to have a headache for multiple days might just get you a brain MRI.

Note to anyone worried about brain mets, it seems like to end but it’s not and radiation works really well, especially if you treat them while they’re small.

SpecialK

Another possibility related to the dizziness is Sudden Sensorineural Hearing Loss. My initial symptom was dizziness, particularly when walking and turning corners. I gave it the three week interim to dissipate, and it actually did. It returned intensely a few weeks later and I inadvertently realized I couldn't hear well out of the left side when I answered the phone and the person on the other end appeared to be speaking gibberish until I changed to the other ear. I too immediately assumed I had brain mets, and fortunately I was able to have a scan ordered by my primary care. He pressed the radiologist to give him same day results, and then called me at 6pm to tell me it was clear. I was very worried and he was so nice to take that into consideration. I was referred to the ENT who also saw me same day, as this is best treated asap with large doses of steroids and anti-virals. This type of sudden one-sided hearing loss is caused by the same virus that causes chicken pox, shingles, and cold sores. I had not realized that I couldn't hear well because my hearing side was compensating. I was not lucky enough to have improvement, and I am now deaf on the left side to human voice - I can hear loud things but not conversation.

NorCalS

Turbokitten88,

I’m TNBC as well and I can relate to your frustration with your doctors. When I first started having symptoms in May 2019, my GP didn’t believe it was breast cancer because breast cancer usually doesn’t cause pain in breast. The NP who gave me a breast exam also did not believe I had breast cancer. Well, it turned out to be a fast growing cancer which originally showed up on ultrasound as 1.8 cm, but grew to over 5 cm by the time I started chemo. After that, I started all communications with my doctors via email so that I have a record of telling them of my symptoms. This has proven to be more effective for me. When I had headaches and lightheadedness a few months ago, I let my MO know about these symptoms via email. I was sent to get a brain MRI right away. Luckily, no brain Mets. I don’t think I would have gotten the response if I did not have my concerns communicated on writing

TurboKitten88

kathabus

Thank you so much for commetning. I looked into that it does sound similar! I have a call in to my Gp but i think they still dont care have not heard back but my oncology called back and the nurse said after talking with the oncologist they wanted me to come in asap and she was going to squeeze me in on tuesday. So im feeling better about having a appointment for sure! I know this this sysmpotm can be may things and for weeks i didnt think even about it possibly being mets till it got worse and then of course my other sysmtpoms. Sigh. Im sad that you had that similar experience Do you still use that doctor now? Thank you again

GlobalGal

I did look into that and it has all the markers of what i have going on! I have a ENT that i can use if i need to this coming week cause i have concidered this since everyone had mentioned to look into it. I just really really want to get to the oncologist also. Which i now have a appointment on Tuesday! Im happy to say i have not puked yet! But there have been a few times that i felt like i could! maybe i have a mild case? or its just not gotten bad yet!? I can see where yes that would effect every min of your day!!! Is that whey they ended up doing for you to get that fixed for you?

TurboKitten88

illimae

So no symptoms at all? i know its bad to dwell and think about things such as the possibility but thats my personality and so i have been on here a lot. it seems i have com across just as many who had no symptoms to those that did! so seems 50/50 on that end. I think if i had ever had something like this before or been having health issues or anything like that i would not have even let my mind go there. But this issue worsening along with my other symptoms i really really want to get it checked out. Im willing to pay for a scan to have peace of mind for sure. it would not be really "lying" i have had headaches as well just not constant ...maybe stretching the truth lol. Has that been the treatment for you is rads only? If you dont mind me asking. You are amazing.

SpecialK

I wonder if that will come later maybe if thats it? Im going on 7 weeks. 8 Weeks after this weekend. I didnt even know that was such a thing! and wow you have some wonderful people on your medical team! i wish others were as considerate! Im so sorry some of the damage was permanent. i guess i need to get this figured out one way or another either way just in case

NorCalS

Im so sorry thats how it went for you getting diagnosed! honestly i have seen that a lot before. And of course i want nothing to be found. But also if its going to i want all the more time to be early! I like the idea of the email! mine has never done that i wonder if i can ask that we do! But im glad your MO send you right away! and so happy it was not brain mets! Like got you a MRI in a day or two? Im worried they are going to take forever to get me anything ordered. We will see i guess.

Anonymous

Glad you got through to your oncologist about this because better safe than sorry.

Ive had two brain mris since diagnosis, both times negative

The first time was when I started treatment , being Stage 4 and HER2+, I wanted the MRI,but my doctor was wishy washy...I had started having eye floaters shortly before and random headaches but I exaggerated a little to convince her to refer me.

Then, one year in, I had an episode of dizziness that lasted more than 24 hours, so bad that I couldnt get out of bed. Called my onc, she had me go to the emergency room and called them to tell them to give me the mri there along with any other tests.

First thing ER doc thought was dehydration but like you, I do drink my water. They gave me iv fluids anyway. Also had an EKG and a chest xray, both negative for problems, as was the MRI.

So no explanation for that dizzy spell, no brain mets, and it has not happened again, 2 years out.

Good luck and hope it turns out well for you

illimae

Turbokitten, Yup, no symptoms, each time I get them it’s a surprise but HER2 likes going to the brain, so I kind of expect it too. And radiation has been the best and only treatment for my brain mets do far, we zap them and they shrink and disappear. But, while I think it’s always best to know, if you’re worried, it’s also usually a simple non-cancery reason we feel the way we do. When I was first diagnosed, I told the nurse that my thumb had been hurting, it thought it might be cancer but it was actually how I was holding the steering wheel while driving, lol.

TurboKitten88

Olma61 Thank you for replying. I feel like if we want the scan and want to pay for it I don’t understand why so many people have to stretch the truth really to get a test. That’s so upsetting to me. I’m hoping I don’t have to do that! I’m really glad both were not anything bad found for you! I’m gonna push for whatever I feel like I need to stay sane and feel comfortable and not worry 💗

illimae if it’s ok to ask how did you find the brain Mets if no symptoms? Also I know there is like a 99% chance I’m fine. But also I thought that during my biopsy that ended in cancer diagnosis 😅 so I cant shake that worried feeling in my stomach for sure. I can totally relate to that lol. I kept asking could it be here?! Or here?! Honestly I have done so good! Till now 🙁

NorCalS

Turbokitten88,

I had an MRI scheduled within days of emailing MO about the headaches. I think you are absolutely right to be vigilant about this. The first five years for TNBC is really critical, so catching possible spread as early as possible is important. I’m crossing my fingers and toes for you

December11

I've had vertigo for about seven weeks now when lying down. The PA said it was caused by water trapped in my ears and congestion. She prescribed fluticasone and said I could also take OTC Claritin. I don't think it has gotten much better, but I also have trouble remembering to take the meds half the time. I do worry about brain mets, but I also trust the PA. Weight loss is also really easy for me, but if I eat too much, I get bad diarrhea. I hope yours is something easily fixed.

TurboKitten88

NorCalS that’s awesome. I’m hoping I can get scheduled for something fast after Tuesday. I just need to know everything is ok 💗 but worse case if I end up being on the side I don’t want to be on.... like you said I want to know ASAP. I k ow the chances are slim. Maybe 98% chance I’m ok I’m sure. But my fear, my mind, won’t let go of that 2%. All I can keep doing is thinking about my baby. I got to know.

TurboKitten88

December11 that’s crazy! I did consider that in the early weeks even though I have no other symptoms I do already have a fluitcasine and Claritin funny enough. I tried that and nothing got better or worse 🙁 but I didn’t really expect a change since I didn’t have itchy eyes, clogged ear, runny nose or anything like that. Do you feel like you may push for a scan of some sort in the future? Has it gotten any better? Tomorrow will start week 8 for me and I’m going crazyyyyy

TurboKitten88

🦄

TurboKitten88

Updating to say that my appointment went good and I'm so happy me and the oncologist were on the same page. She agrees with my age and type of cancer we need to be sure that's it's nothing And that some of my symptoms are worrisome and would rather be safe than sorry. And want to do either a pet or ct scan Full body whichever my insurance will allow. And a mammogram on my untreated side due to feeling some changes possible lumps. And we were also able to do full labs today as well. I’m feeling better about seeing someone and get moving to get me peace of mind 💗 will update again after.

illimae

Turbokitten, sorry, I’m just seeing the question you asked me. Generally, you don’t find them until there are symptoms, which is part of the poor prognosis with brain mets, some don’t know until they’ve had a seizure or discover widespread brain mets. In my case, I had an unrelated headache but because I’m HER2+, my MO ordered the MRI immediately. Once you have confirmed brain mets, you are monitored very closely, I get brain MRI’s every 3 months, so when there is something new, it’s usually tiny, which is great for treatment.

Cancer is scary and fear of progression is very real but in my experience nearly all of my suspicions turned out to be unrelated and that helps me keep the worry in check. Good luck with your scans 🙂

TurboKitten88

small update with a question. All my blood labs came back today and everything is fine. No high or low anything. I’m glad but also can cancer not be caught on blood tests? I’m gonna guess yes since when I had my labs pre cancer everything looked normal but wondering if anyone has anything to add or any insight.

NorCalS

Turbokitten, glad to hear that the blood tests came out normal. I don’t think that blood tests are conclusive. Hopefully, MRI and/or PET/CT scan come out clean as well

TurboKitten88

NorCalS I thought that was the case. I feel like more peoplE would catch all kinds of things and other cancers even if bloods where the best option. But this is one thing I can check off. I have my diagnostic mammogram on Tuesday so looking forward to getting that done and then waiting to schedule the full body scan.

exbrnxgrl

turbokitten (love the name!) there are some cancers which can be detected in the blood but bc is not one of them 😞. Glad to hear that your bloodwork looked good

orangeflower

I had the kind of vertigo you're describing, and my general practitioner thought it was an inner ear issue. She prescribed physical therapy, but the issue mostly went away on its own before I started the therapy. This was right before my breast cancer diagnosis.

illimae

I would assume it’s not cancer related as well, however, my bloodwork was fine when I was diagnosed and my tumor markers CA 15-3 have always been normal, even with active brain mets. My point is that this is one of the reasons why scans and biopsies are used to confirm.

TurboKitten88

exbrnxgrl thank you 🥰 hehe. I thought that was the case but honestly I had not even thought about it in so long! I was still hoping it was something simple like low vit d or something. I still want to get answers!

Danee78 I did have a video appointment with gp and they really didn’t even mention vertigo. I did! And told her I have a ENT picked out for after all the scans in case I need to go that route but I was pretty disappointed in my visit. I keep hoping it will resolve but we are going into 9 weeks of it so I’m thinking it won’t 😕

illimae of course I’m still hoping it’s not cancer related but sad the blood test didn’t show some kind of a deficiency. In a way. That sounds weird but I guess I’m saying I want it to the lesser of the issues. Looking forward as weird as that sounds to the scans and tests. I need this to be fixed one way or the other.

TurboKitten88

updating to say I have a brain mri with contrast scheduled for Monday at 11. And then a mammogram for Tuesday due to some lumps on my unaffected side. So we are getting everything set up fast and I am glad for that. They will still set me up for full body ct or pet when that is approved through insurance.

NorCalS

Turbokitten,

Glad to hear that the tests are set up. If possible, see if you can get a PET-CT. Otherwise, getting both before treatment to obtain baseline is good. I had a body CT, brain MRI, bone scan, and echocardiogram before my treatment. I wanted a PET as well, but the medical center couldn’t fit me in before chemo. The CT scan and MRIs have been helpful because the radiologist has been able to compare them to recent brain MRI and CT scan.

NorCalS

To clarify my prior post, my understanding is that a PET-CT is more accurate in locating cancer cells. MO believes PET alone can result in a false positive. MO and Breast surgeon both believe PET-CT is more accurate and if the center that is providing your care does not have a PET-CT, I was told that getting separate CT scan and PET scan provide the same accuracy