Author Topic: Covid/AN/Surgery  (Read 4266 times)

sycamore

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Covid/AN/Surgery
« on: April 11, 2020, 05:19:42 pm »
I was told in Jan that I needed to intervene (surgery or SRS) for a medium size (2 cm) fast growing AN. I was in the process of speaking with doctors, doing research and waiting until my semester was over when COVID happened. Now with COVID, so many high volume centers are postponing surgery and I am worried!

You can only imagine my anxiety about AN, surgical outcomes and complications, and COVID. I was thinking of working with Slattery, USC Keck (Schwartz and Friedman), or on the East Coast Loeffler and/or the surgeon Dr. Barker. All of this is postponed. Mayo clinic is doing some of surgery, and I understand I would go in alone without my husband. I am a long-time Hodgkins patient and received radiation to the neck when I was 21. I'm now 59, live in NC and would love to have this tumor out if I could have a positive outcome (facial nerve, balance and possibly hearing preservation). Hearing is 50%.

Questions: Any fellow Hodgkins survivors here? Any insights about COVID and surgery? Would anyone think that SRS is a better option? Does anyone understand complications/prospects for Gamma Knife vs Proton therapy? Finally, how do you think financial considerations for surgeons and hospitals are shaping treatment in general, and now?

Confused and worried. Wishing everyone else the best. Apologies for these multiple questions but would love to hear back if possible. This situation spells trouble.

Greece Lover

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Re: Covid/AN/Surgery
« Reply #1 on: April 14, 2020, 08:50:54 am »
I"m so sorry you're stuck in this situation. I know a few others have posted on here as well. I don't know what it means that your tumor is "Fast growing" but even a fast growing AN is probably not an emergency, and I would guess (obviously I'm not a DR.) that waiting 6 months would not change your expected outcomes much if at all.

Your question about financial considerations is a good one. My sense is that finances are not a factor in how doctors counsel their patients.  It certainly shouldn't be.  However, different treatment centers do tend to "believe" in one form of treatment over another: surgery vs. radiation especially, and different places are not as familiar with some of the surgical approaches (like Middle Fossa). So, its generally good advice to get more than one opinion if you're deliberating among different treatment modalities.
I wish you peace!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

sycamore

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Re: Covid/AN/Surgery
« Reply #2 on: April 14, 2020, 01:33:23 pm »
Thanks so much for your reply! I really appreciate it. I think I was in a panic when I wrote last. I'm trying to keep my cool and learn more. I was told to intervene in January, and I'm still very confused about surgery vs. radiation and choosing between what seems to be two unappealing options. This seems like a terrible maze to navigate and to know beforehand what might be the best outcome. It feels like there are so many unknowns...I don't know how to make this decision.

jami

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Re: Covid/AN/Surgery
« Reply #3 on: April 16, 2020, 09:39:42 am »
Hi Sycamore,

I am also sorry to hear about the situation. I recall how stressful it was after the AN was confirmed, surgery decided, and then the surgery was scheduled 3+ months out. For some reason, i thought it would be right away.

I cant really answer any of your questions, wanted to share that I saw some folks at UNC Chapel Hill, and the care was super. My brother who is an eye surgeon (in a different state) spend a lot of time with them before/after surgery and was very impressed with the care. I would be happy to share their names, if it might ease your mind to have a consult. One of my co-workers who also had an AN happened to have the same surgeon a few years earlier (I found this out after the fact) and was also very happy with the results.

In terms of selecting treatment, they did not pressure me either way. I think that in many cases, until they see the situation, there are many unknowns. I had surgery and then a while later had Cyber Knife. The deciding factor for CK was when one of the surgeons mentioned that he recalled how tightly the remaining tumor bits were sticking to my facial nerve, and I should try CK before another surgery. I was thankful for that insight. 

Finally, my insurance covered it all really well, so we never talked about the financial considerations. But I think it is rare for the actual surgeons to be involved at that level, usually the coverage is handled by the office personnel.
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

sycamore

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Re: Covid/AN/Surgery
« Reply #4 on: April 17, 2020, 03:54:03 pm »
Dear Jami,
Thanks so much for responding. If you don't mind sharing, I'd love to have suggestions for a good ENT/Neurosurgeon at UNC Chapel Hill since Chapel Hill is only about 2 hours from me. I'm fairly new to the area.

Seems like there are risks and negative outcomes possible with surgery and SRS, or very good outcomes if one happens to be lucky and in good hands. I can say this...my ear feels full and I feel imbalance most of the time (walking in the woods seems to help a bit for some reason). I really don't feel all that well.

I'm sheltering in place, working from home, and trying to talk to doctors about these choices and make sense of them. Everyone is (and rightly so) completely engrossed in this COVID tragedy, as I am, but I am also just so worried about this brain tumor and whether I can make it through COVID and the right choice about tumor treatment, and even have treatment.

If I didn't feel like hell, I probably would be more calm about waiting another 6 months --I may have to anyway....

bigjack711

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Re: Covid/AN/Surgery
« Reply #5 on: May 01, 2020, 06:52:45 pm »
I understand your anxiety and sense of urgency.  No one wants to hear their doctor say the words "brain tumor".  I felt the same way upon diagnosis for a 1.4cm AN in 2015.  I immediately read everything I could find, ran out to see 3 doctors here in Houston and reached out to House and Keck.  Even though I didn't have noticeable issues, I had an ENG to measure balance deficit, which turned out to be 60% in one of the categories.  The ability of the brain to compensate is amazing.  I did have profound hearing loss in the affected ear, but I'd been living with hearing loss since I was 36 (I'm 56) and amplification (aids) helped and still help quite a bit. When I recovered from the initial OMG! response and took the time to educate myself about the condition and the treatment options, I decided to watch and wait. 

5 years later I'm still watching and waiting.  The hearing in my left ear has slowly continued to decline as expected, but treatment would not have improved that outcome. The surgical option would have just taken what I had left.  I still notice occasional minor balance issues, but they're minor and from what the docs say, the best I can expect from any course of treatment is that my balance will stabilize, meaning just not get worse.

My last MRI in January 2019 the thing had grown to 1.9cm.  So I'll go back for another MRI in a few months after the COVID situation stabilizes.  If it has grown more than 2-3cm since the last one, I'll probably get serious about scheduling SRS.  If no growth or only 1cm, I might wait another year.

I will do SRS when it's time.  I'm definitely NOT doing a craniotomy by choice.  My thought is even in the best hands the morbidity risks of surgery just don't balance out with even the best-case outcomes, especially given my current symptoms. If surgery meant there was a chance I'd get my hearing back and reduce the tinnitus, maybe.  But surgery will just take the rest of the hearing I have left now and could easily make the tinnitus worse.  Zero upside in terms of improved symptoms and quality of life going the surgical route as far as I can tell. 

The only upside to surgery in my case seems to be having the thing gone for good.  But SRS is over 90-95% effective in stopping further growth in every study I've seen with much lower and less serious morbidity risk.  I suppose walking around with a tumor in your head freaks out some people so much that they just want to get rid of it as quickly as possible.  I had that initial response too until I took the time to learn more about the condition.  These days, I rarely ever think about it.

In your narrative you say your tumor is fast growing.  Have you had multiple MRI's ?  How do you know it's fast growing and what does fast growing mean exactly ?

As other have said here, these tumors, while serious, are almost never emergencies especially if you are asymptomatic.  I'm just a guy on the internet and certainly not a doc, but I would very skeptical of anyone pressuring me into immediate treatment, especially a craniotomy, especially absent symptoms, especially in the current COVID environment when you'd have to do it alone in the hospital, and especially given your other health conditions.

Again, this absolutely isn't medical advice, it's just one man's experience and opinion and you know what they say opinions are like, everybody's got one.  But watch and wait is a very legitimate medical option in many cases and worthy of consideration, as one of the docs with whom you spoke seems to have advised you. 

Check out the watch and wait threads and radiation threads here on the site for additional perspective.   This forum and the ANA is a wonderful resource for all of us.  This diagnosis sucks and there isn't any real happy news.  But there are definitely worse things out there.  This is manageable with help and education.  You're not alone.

I sincerely wish you the very best and hope you find peace with all of your decisions on this journey.

Dx March 2016: VS left side, 1.2 cm x 0.9 cm x 1.1 cm, W&W
June 2018:  1.9 cm x 1.4 cm x 1.3 cm, now what?More W&W
Jan 2019:  1.8 cm x 1.5 cm x 1.6 cm, ready for gamma but chickened out.

gino

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Re: Covid/AN/Surgery
« Reply #6 on: May 29, 2020, 12:15:12 pm »
Hi... I sure do want to support you as I am a Hodgkins survivor and received full body radiation in 1990.  I have had an AN since August 2017. You stated that the radiation was up to your neck? The penumbra of the radiation could of extended to the IAC.  I have always wonder how many radiated cancer survivors have had nerve schwannoma overgrowth.  Hope things go well.  I also am ready for treatment and am considering a 4π (4pie) treatment plan which would limit the dosing of the radiation. You can read the study at the us gov site. Do a search for study number PMC6000182. 
I forgot my old password for daoisthere after loosing my email... such a senior moment.   LOL

My AN in the right IAC has grown from 1017
12mm 5mm 5mm