Head & Neck MRI Results

Spoonie77

Sooooo, I had a head and neck MRI on Wednesday. My neurologists office called this afternoon and said I needed to come in and talk over the results with my doctor. And I quote, " it's too complicated to discuss over the phone and when you come in you'll work together to come up with a game plan." They had said when I left my appt that we would see what the results were before scheduling any appt.

I will see him next Thursday.

Seems like a long time between now and then to wait...

Previously when I've had MRIs with this neurologist if things have been stable they call me and say so , telling me to follow up with them later if needed or if new symptoms occur.

Well, this summer has been full of many new symptoms, some of which are attributed to my rare zoladex allergy, but others not so much unfortunately.

So I went in to see him, told him there latest in the Spoonie saga, and he was concerned. He promptly ordered the scans with and without contrast.

With the new thyroid nodule (6 x 8 x 7 mm solid & hypoechoic) now under surveillance (which i can now feel whereas last month when discovered via US i couldn't), with my low grade daily temps, with swollen glands in my neck that are itchy but not painful, night sweats, weight loss, severe fatigue that doesn't get better with rest, and lymph nodes that I can feel slowly growing and see growing in photos...I am concerned.

These are all new symptoms for me, plus add in new onset of right sided vision issues, right sided ringing & pressure in my ear, plus memory issues concerning recall (ive recently forgotten important pin numbers, my address, how to spell easy words) and add that all up and its alot to be carrying around in my body and brain.

Im going to try to stay distracted but Im worried that the thyroid nodule or these lymph glands (5b level & supraclavicular) are a trail leading up into my brain with METs.

Le Sigh. 6 days to wait. I can do this. I can do this. I can do this.

Reading back this post to myself, I sound like a hypochondriac. I logically know the odds are unlikely to be METs but the fear is real. Hope there will be different explanation next week. Fingers crossed.

romashka

Spoonie77,

Far from a sounding like a hypochondriac, you sound like most of us would if we were having your experience. Me for sure.💜

My fingers are crossed too and a big hug to you.

Spoonie77

Thanks for the reassurance there, Romashka. Definitely helps to know others would be concerned as well.

Just to add to the "fun", looks like I'll need to see a Dermatologist asap. I've been following a few of my moles the past 6 months and there's one on my right thigh that just started hurting like crazy tonight. When I got up to look at it closer & take a few new picts of it, I noticed it was leaking clear fluid. I compared it to my previous picts of that mole 1 and 3 months ago. Its grown bigger than an eraser head now, colors are more varied, is now raised, and while it wasn't painful before it was itchy prior to this.

I sure hope it's also nothing, but have a family history of skin cancers and Ive burned easily in the past so knew it was something to monitor.

Anyone know if Breast Cancer can show up in the skin at all?

Veeder14

Hi Spoonie,

Please go in soon to see the Dermatologist. Not to scare you but 3 years ago I had this thing growing on my lower leg that looked like a wart and was sort of solid. I got into the dermatologist and surgeon just in time because it turned out to be atypical melanoma (the worse type of skin cancer) which had already spread to one of my lymph nodes. Anything that doesn't look right on my skin I have checked out right away.

You are having such a rough time with all these symptoms. I hope you can get some relief soon.

KBeee

Sorry you're dealing with this and have to wait so long. The wait is excrutiating. Hoping the results are something treatable, and something non cancer related.

Spoonie77

Thanks Veeder & KBeee. Appreciate the support and company while I wait.

Really trying to keep reminding myself that most likely its some small changes seen in my MRI and they are just going to follow or monitor it.

It's way too easy to get lost down a hole of worry and "the world is ending" type thoughts if I don't actively jump into my train of thoughts and derail them with logic whenever they reappear.

Gonna do some cleaning today so that should keep my mind occupied. The bright side of trying not to worry, my house starts to sparkle!

Veeder - super glad that they found that atypical melanoma early! Wow. So scary! I would've never thought something that looks like what you describe could be so dangerous so thanks for sharing some details. In that case, I think I'll add another skin tag type thing to my list to show my dermatologist when I go in to have this other mole checked out. Yikes!

What kind of treatment did you have for that? Just removal or more? Do you know if Breast Cancer can ever show up in skin cancer? Been wondering about that.

Spoonie77

Ugggh can't sleep. Been a rough day too in trying to keep the nurses comments from the phone call (as in "it's too complicated to discuss over the phone" and "will come up with a game plan then") from running around and around in my brain ad nauseam. Failing at that.

Thursday, I really wish you'd get here sooner than later.

Le Sigh.

Veeder14

Hi Spoonie,

I don't know if breast cancer can show up in skin cancer or not. I do know some people get melanoma with no lesions on the skin, just an internal tumor. Now, that's scary. \

I had a wide excision (skin taken out down to the bone in my lower leg). Although I had one positive lymph node, since the 2nd one removed was clear the tumor board decided I didn't need further treatment as in some sort of medication. Then I've been doing ultrasounds over my lymph nodes in the upper leg, and full body PET/ct scan.

On Tuesday after the holiday, I would call the doctor's office and tell them you need some answers NOW. or better yet, a copy of the report from the test so you can research it yourself. That's what I do when they insist I have to get results in person and I'm 2 hours away.

Spoonie77

Wow Veeder, skin taken down to the bone?! Owwwww. I'm sure it wasn't a fun process but I'm so glad for your sake that it was found early enough to be treatable. I agree, it's scary to know that a person can develop Melanoma without a lesion on the skin. Found that out about 3 weeks back when someone I know shared with me that they'd been dxd with it. I was in shock. You never ever hear of that and I think it's a shame, maybe if that was more common knowledge people would go in sooner if they felt unwell. IDK. Just a shame though.

As for me, yeah I'll definitely be calling SOMEONE on Tuesday morning. (ETA - just remembered I see my MO on Tuesday, so I will definitely be showing her my new "prizes")

Found 2 enlarged lymph nodes in my Left and 1 in my Right Groin/Thigh area.

What are they called Inguinal nodes? I'm trying but failing at not freaking out. NO ONE, EVER has checked these, even when I was first dxd with BC. Seemed very strange to me at the time but then I forgot about it and didn't think to check them myself when all this started out back in July. I do know that at least back in March there was nothing abnormal there because up until then I was still doing PT in that area for LE. I still do other PT for it daily in other areas but I was given the ok to stop the thigh LMD in spring. Anyway, all was normal till recently at least. Guess that's better than wondering how long they've been like this.

So, the Right side node feels huge, like a stretched out ping pong ball, but soft/rubbery like. The left area has 2 that I can feel, sort of like almond sized also soft/rubbery. None of them hurt per se but the tissue around them does ache and feels a bit tender.

Uggggggggggggh. My brother died from Non Hodgkins Lymphoma when I was 13 and these are all adding up to be symptoms he had. I know it doesn't mean that that's what I have, but it does mean I have a higher risk of developing it than the average population.

So yeah, someone's getting a call and someone is going to listen to me and give me answers or send me to someone that can, STAT.

What else can happen for me to talk about with my team of doctors? Seems like my list is a mile long and growing.

Gonna be hard to sleep tonight.

Xxxxxxxxxxxxxxx

Spoonie: I'm sorry you're going through all that uncertainty! I hope your date goes well. I send you prayers and positive thoughts ... BIG HUGH

KBeee

I would definitely call them back and/or get a copy of the results today. Having you wait longer is just plain cruel.

Spoonie77

My MO had a copy of my MRI results. Brief convo about them, more to follow with my Neuro on Thursday.

Now I know why I need "a game plan".

Multiple new white matter lesions seen, including brand new areas of concern/lesions in my cerebellum and in my brainstem. My MRI's had been stable for the past 6 years prior to this. Just 7 months ago, my last scan was stable. Now, it is much much much changed. There is talk, again, of dx of MS.

Worried.

Any thoughts? Other experiences with white matter lesions in the perspective of BC?

Ugggh, well at least I do know that there is not a tumor on my Optic Nerve causing the vision issues. Some good news with the bad. The little things.

------ >Posted on the Stage IV Questions thread, but will double post here to see if anyone may respond sooner...

Could I ask how does BC METs show up on Brain/Cervical MRI's? Do they show up as white matter lesions? How are Brain METs dxd or differentiated from lesions due to MS and other demyelinating diseases?

Xxxxxxxxxxxxxxx

My heart is with you! I hope your visit to the neurologist is the best possible. SOFT HUGS ❤

Pd: I've been following the Spoonie saga. You are admirable and very inspiring! Thanks for posting

rbreny

Hi Spoonie, I too have moderate to severe white matter lesions and when first found out I was tested for MS. This was 8 years prior to my BC diagnosis. I don't have MS nor Alzeimers thank god. My neurologist told me that Einstein had it too ! I hope you fare as well as I did. Please don't be frightened. I was too and here I am 8 years later. Hugs !!

Spoonie77

Awwwww, you are the sweetest, Yndorian! Thank you for those kind words. I feel all warm and fuzzy now.

Rbreny - I'm super happy to hear that you do not have MS or Alzheimers! And wow 8 years is a long time to go without any further changes in your lesions. I hope you do not ever have to revisit that topic and have many years of health and happiness ahead.

I made it 7 years and now changes, but will take it one day at a time. Thankfully, I have a different perspective on MS now then I did 7 years ago. Even though MS is a serious, life-altering debilitating disease (my BIL dxd & living with it for past 25 years), I can see the silver-lining in it, that it is not Brain METs at this point and not a giant tumor in my brain. Sure, if I do have MS, things will change, but IMO it could be much much worse. I guess I'm thankful for the little things.

---------------
(posting this here for anyone else that comes looking for info on MS, Lyme, Brain METs, etc)

This perspective and relative calmness, I think, goes back my MS re-revelation. Oddly, since my team (10 years ago @32 and also 8 years ago @34) tried to dx me with MS, due to non-specific white matter lesions occurring, I was relieved to read those words vs see tumor or cancer etc on my report yesterday. My sister though of course was a bit freaked out.

However, those years ago, since I was battling Chronic Lyme Disease hard core and Lyme can also cause "non-specific" white matter lesions, I persisted that MS was not accurate for me and continued to pursue treatment for Lyme. I had a great deal of improvement with my treatments and symptoms, but seemed to have reached a symptom plateau these past 2 or 3 years.

In those first years, after a "probable MS" dx, no one really pressured me, as again, my MRI's continued to state they were "non-specific" white matter lesions, meaning these type could be seen in other illnesses/'injuries too. The drs told me that even with these lesions, confirmation would only truly come with time. At that point, I didn't have any other specific signs of MS.

At 32, I was comfortable with the fact that it very well it may turn out I did have MS eventually but that at that time my Lyme symptoms and treatment were my priority. It's well known that MS patients can have Lyme at the same time but that MS symptoms will not be changed by any type of antibiotic or anti-infective medications. Perhaps that's why I've plateaued in the recent past years because the rest of my symptoms were/are due to a form of MS, most likely RRMS (Relapsing Remitting MS)

With these new scans from last week, they are much differentiated in just 7 months since my last stable one, I think my old viewpoint has changed. I think I am ready to look at the possibility that yes I do have MS.....

These new scans are no longer "non-specific", they now show multiple lesions in 3 different specific locations seen most often in MS (like the juxacortical and brainstem regions). This was not the case at any time before in any of my MRI's. I can find no evidence of multi-focal lesions in Lyme cases, that doesn't mean they don't exist, just means I couldn't abra-cadab-rah them with Google.

Lyme lesions are "isointense" (pg 473) on T1 weighted MRI images. My new lesions are on T2 weighted images and they are "hyperintense" (<--this is a really helpful link to reading/learning about MRI imaging and terminology), which from all my Googling last night (lol) it seems that Lyme lesions do not hyperintensify. (Not a dr, so could be wrong fyi) The lesions on my brainstem and my cerebellum are hyperintesive. Also it seems from Google that Lyme lesions do not become much larger than 2-3mm, while MS legions vary in size and are "diffuse" rather than sporadic. I'm not sure of the sizes of my lesions as of yet, but I will be asking tomorrow for clarification.

I found out an interesting fact last night.....the lack of Estrogen can bring on and cause MS attacks in women.

" Low estrogen states such as menopause and the postpartum period favor exacerbations of multiple sclerosis in women with the disease."

Hmmmm, let's think of what's happened since my last scan in Jan???? I was on Tamoxifen and then on Zoladex, much reducing the estrogen in my body. And now, I have multiple new lesions in my brain that are very specific for MS.

Coincidence? I doubt it. Another question to ask my doc.

There will be lots of questions and I am hoping for more testing, probably a Spinal Tap, EEG, Visual Evoked Potentials, and a few labs since none of these have been run on me in over 8 years. Perhaps this will continue to solidify the case for MS as well. Maybe not.

One big question is about Brain METs. I'm sure if these appeared worrisome for this, it would have been noted on the report. I'm relieved there is nothing mentioned and will hold on to that through tomorrow. I'd like the doc to go over differences of how METs appear vs MS lesions appear on imagining so I can put that worry to bed.

Over the past year, I've thoroughly enjoyed reading through the website "The Radiology Assistant" at multiple phases of my Breast Cancer journey and last night I found they had an EXHAUSTIVE page on Multiple Sclerosis too. Complete with many, many, many MRI images of MS, Lyme, Encephalitis, Brain Metastases, and more.

If anyone is curious, (below) is how various lesions appear in MS, METs, PML, ADEM, Sarcoid, and in Brain Injury:

It was SOOOO helpful to see them side by side for comparison. Perhaps this may be helpful to others too. You can find it here: http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html There is also a good section concerning CT Scans too.

If ya'll are interested they have a very INFORMATIVE and equally as helpful page on Breast Cancer, Bi-Rads, Calcifications, MRI imaging, and Pathology of the Male Breast too. Good stuff.

Anyway, that's probably WAYYYYY more info than anyone of ya'll wanted to learn this Wed morning about MS!!!! Hahahahaha you've all gotten A's for the day and can go home early as a reward!

In general, I'm doing pretty good all things considered. Sure, it's likely MS. My brother in law has had MS for the past 25 years. I know the damage and horror it can bring, but for now, I know this is not a death sentence and I know that I am not on a time clock with only months or under 5 years to live. For me, that is wonderful.

Thanks ya'll for listening, for caring, and for continuing to support me along this interesting crazy journey of Purple Squirrel Unicorn-itis!

KBeee

I am glad you are headed towards answers. You have some good informed questions for the neurologist. Hoping he/she has definitive answers and a plan moving forward. Sorry you're dealing with this.

Spoonie77

Thanks Kbeee. I appreciate the support.

It's been a very very very overwhelming summer, health wise; a pending issue with a growing mass on my thyroid, 2 enlarged level 5b supraclavicular lymph nodes, and due to a Zoladex allergy, no longer being able to be on any endocrine therapy for my BC. Yeah, stressful enough.

Now since I saw my Neurologist last wee, I have to add MS to my full plate.

Though since I am young I have many options for treatment and currently my stage of disease is mild so I'm trying to stay optimistic. There were 15 new lesions on my MRI since Jan of this year. Some were in my Brainstem and also in my Cerebellum. VEry tpical of MS I guess. Sounds scary. The good news is though that after that appt my Neuro ordered a Thoracic Spinal MRI and it came back clear, no lesions appear in my spinal cord.

The new dx and its implications are slwoly settling in and I'm finding it hard to process the difference this will have in my life. I thought it was omplicated enough before, having been dealing with many chronic illnesses and auto-immune issues since I was 13 years old, pratcially seeming to add a few every other year or so. I really can't grasp how much my life will be different with this new dx. I thought I was prepared for the dx but it seems not.

I counted up the major ones I have had for years and with MS truly dxd now, I'm up to the lucky *ha* number of 13.

IT IS ALOT.

My counselor believes I am dealing with PTSD due to so many health related conditions and experiences within the medical field and am dealing with something called "foreshortened future". It's rough but I am truly trying to take things one day at a time and not think years and years into the future. All we have is today so I need to focus on what's in front of me right now and the status of my life and health NOW vs what it may end up being 5, 10, 15, or 20 years from now, whether the cancer comes back or not or my MS progresses or not. Just day by day.

The next step now is to get a second opinion on the MS given my complicated medical landscape and then decide what, if any, treatment or further baseline testing (cognitive/motor skills/etc) is needed now and make a plan. I had so many doctors in my life prior to this and now I'm adding a whole new team to the prior ones. It feels like so much to juggle. I really wish there was some sort of "gate keeper" that would corral all of my doctors and have them get together and plan something that was in the best interest of ALL of my conditions, rather than my have to be the monkey-in-the-middle so to speak.

I am just exhausted and know that this is all just beginning.....sort of like how it felt in the early BC dx days. Hopefully like with the BC, it becomes easier as the plans get soldified.