Newly diagnosed--stressed and cognitively dissonant about care going forward

[Sharky]

Hi Everyone~

I have been lurking for about a week, since my diagnosis of an AN last week. I had an MRI for a possible optic nerve issue,which turned out to be fine, but they found a small AN instead. I had recently experienced a bout of severe vertigo and I have fullness in my ear, so it all fits. I also saw the little bugger on the MRI, which was surreal. Just had my hearing tested and am just shy or normal in the affected ear, so that's good for now.

I'm in watch and wait for the next 6 months. My tumor is only 7mmx4mm. The specialist I saw was very kind and caring and did not patronize me in the slightest when he said we would W&W for a time. He mentioned radiation oncology, stress management, possibly a therapy appointment, and he also mentioned a concern about NF2, since I have bilateral cataracts and an AN.

My struggle right now is that I left the appointment feeling so much lighter--relieved!--to be on W&W. I thought I was "done" for the time being. Then the very next morning I got a call from the radiation oncologist, then another call from the genetic testing doctor, and another call to set up an appointment to join the survivorship clinic for cancer survivors! It's just too much! And WAY too fast. For one thing, I was diagnosed with cataracts at 54, not as a child or adolescent. So why do I need to rush and do genetic testing for NF2? My parents are both deceased. I have no clue who might or might not have the genetic mutation. And what good will it do me to know I have NF2, before the fact? There is no prevention.

I will never regain my emotional or psychological stability after this DX, with all of the doctors all over me! I would like to choose my own radiation oncologist, for pete's sake...it has just been nuts and I would like to hear from other people what happened in your first week or two after diagnosis and being put on watch and wait. I am grateful for the expertise and reputation of the original ENT, but I am not ready at all to make any decisions--about anything! I really want the doctors to just leave me alone.

I'm sorry if this is ranty. I'm single, no kids, my parents are both gone, and my beloved siblings are raising their own families later in life. I don't have a lot of people to rant to at this point.

[MarlaB]

If you were referred to a cancer survivor group as a response to this diagnosis, you should find another physician, because in RARE occasions, ANs are not benign. If you have contacted ANA, you should receive a lot of information regarding this tumor, as well as resources for experienced AN physicians in your area.

Marla B.

[Sharky]

Hi Maria and thank you for replying.

Do you mean essentially that the cancer survivorship referral is wack o and I should find a *new* doctor, or do you mean an *additional* doctor?

I a pretty sure you mean different doctor...and thanks for that, if that is what you mean. I do know that only very rarely is an AN not benign. I would feel awful sitting with cancer survivors and prefacing my own sharing with, "Well, I don't have cancer, but..." I would never want to be that person in a cancer survivor group. The whole suggestion seemed so wrong.

[bfoley]

Wow Sharky - we could not have had more different experiences!  I noticed hearing loss after a slip on the ice.  Insurance asked me to go to GP, who referred me to audiologist, who referred me to MRI.  The audiologist called 3 business days after MRI to say he could not help me, I have an AN and that I HAVE to go to the university.  He said he referred me to them and they would be in touch.  A week later someone called from the U to make an appointment, the next one available was in 2 months.

I started furiously researching, found helpful information (and this discussion board).  I decided I wanted a second opinion.  That seems to be what the majority of folks do.

I got to sit without any real information on my tumor for 2 months.  That was not fun. My symptoms became much worse within that 2 months, and then about 3 months I got very dizzy/vertigo.

I would encourage you to get another opinion on your options and take the "what questions to ask" with you.  It was really eye opening about the options and what each facility does for treatment.  Also, you need to feel comfortable with the providers and what they offer you in the way of support as well as treatment. (the cancer support group makes no sense to me)

Hang in there and take care of yourself, do what you need to do that will make you feel better.  Remember, it is your health and you are in charge!  Keep us informed on your AN journey...

[chrisabbott]

I had a very hard time waiting for appointments (in particular, waiting to find out when they would be) - maybe there isn't really an ideal for how long it takes to get these things rolling?  I was led to believe they would be hurrying things along, only to find someone dropped the ball setting up my first appointment.  It seems like you came away with the impression that you have plenty of time to W&W, but the next day was overwhelmed with the follow-up.  I wonder if communication and expectation setting will ever be improved??

Most AN are treated in Cancer Centers - maybe you wound up with the survivors referral simply because of the type of clinic?  I haven't had or heard of such referrals being made but I find it off putting when the hospital websites, and inevitable patient experience surveys etc. all mention stuff to do with cancer "we know its difficult to have a cancer diagnosis".  Okay but what about the patients that don't have cancer, but do have a difficult diagnosis to deal with?  Kind of makes you feel like a red-haired stepchild.

If you have NF2, you will want to know as that would mean a different approach to your treatment - I'm pretty sure there's a test for that.  If you don't it would be good to know, so you can go back to the comfort zone of waiting to see if your AN will even grow (lots don't apparently).  Take the appointments/tests that make sense for your next steps, and tell the other guys you're putting them on the back-burner.  I hope things settle down soon and you gain a better understanding of where you stand, or find physicians that are a better fit for you.

[Sharky]

Wow Sharky - we could not have had more different experiences!  I noticed hearing loss after a slip on the ice.  Insurance asked me to go to GP, who referred me to audiologist, who referred me to MRI.  The audiologist called 3 business days after MRI to say he could not help me, I have an AN and that I HAVE to go to the university.  He said he referred me to them and they would be in touch.  A week later someone called from the U to make an appointment, the next one available was in 2 months.

I started furiously researching, found helpful information (and this discussion board).  I decided I wanted a second opinion.  That seems to be what the majority of folks do.

I got to sit without any real information on my tumor for 2 months.  That was not fun. My symptoms became much worse within that 2 months, and then about 3 months I got very dizzy/vertigo.

I would encourage you to get another opinion on your options and take the "what questions to ask" with you.  It was really eye opening about the options and what each facility does for treatment.  Also, you need to feel comfortable with the providers and what they offer you in the way of support as well as treatment. (the cancer support group makes no sense to me)

Hang in there and take care of yourself, do what you need to do that will make you feel better.  Remember, it is your health and you are in charge!  Keep us informed on your AN journey...

Hi there, and thank you for sharing all of that. I'm so sorry you felt left alone without info for so long! That must have been so hard. I actually can't imagine that. Especially with worsening symptoms...how scary.

I absolutely do know that I need additional opinions, and lots more info. I have decisions to make. My reaction was to how quickly things happened. I didn't have a single day just to sit with the news before my phone was ringing. That was a bit much for me to cope with. I'm doing much better now because I have disconnected momentarily and am just processing--and reading this amazing forum. I'm not scheduling second opinions or genetics testing, etc. I'm just trying to normalize to the extent I can for a bit before the next round of info-gathering. :-)  It was very upsetting to be given a diagnosis of a noncancerous tumor and then to be shuttled off to join the cancer survivors group. That did absolutely nothing for my mental or emotional health just then! Haha (laughs darkly)

today I started a new job and had a great day. It has been my first calm day in a couple of weeks. :-) Thank you again and all the best to you.

[Sharky]

I had a very hard time waiting for appointments (in particular, waiting to find out when they would be) - maybe there isn't really an ideal for how long it takes to get these things rolling?  I was led to believe they would be hurrying things along, only to find someone dropped the ball setting up my first appointment.  It seems like you came away with the impression that you have plenty of time to W&W, but the next day was overwhelmed with the follow-up.  I wonder if communication and expectation setting will ever be improved??

Most AN are treated in Cancer Centers - maybe you wound up with the survivors referral simply because of the type of clinic?  I haven't had or heard of such referrals being made but I find it off putting when the hospital websites, and inevitable patient experience surveys etc. all mention stuff to do with cancer "we know its difficult to have a cancer diagnosis".  Okay but what about the patients that don't have cancer, but do have a difficult diagnosis to deal with?  Kind of makes you feel like a red-haired stepchild.

If you have NF2, you will want to know as that would mean a different approach to your treatment - I'm pretty sure there's a test for that.  If you don't it would be good to know, so you can go back to the comfort zone of waiting to see if your AN will even grow (lots don't apparently).  Take the appointments/tests that make sense for your next steps, and tell the other guys you're putting them on the back-burner.  I hope things settle down soon and you gain a better understanding of where you stand, or find physicians that are a better fit for you.

Hi chrisabbott, and thank you! Yes, that is how I felt--very confused by the speed and seeming urgency of what I thought was a much more relaxed scenario for now. As far as finding the right physicians for me...I have not even begun. I have a strong feeling that I didn't want a teaching hospital to handle my care, but it seems that most of the best centers for AN ARE teaching hospitals. I don't really want the surgeon to hand over the scalpel to a newbie fellow "so that he/she can learn." That terrifies me, and I don't know the answer today. I saw the only ENT in my city who handles AN. Everyone else in town refers patients to him.

I am trying to glean from the NF2 forum what the testing is. It looks like they'd want to biopsy the tumor tissue...? My parents are deceased and no one is my family has NF2. I have one AN and adult-onset cataracts-not juvenile ones--so I'm not getting why they are worried about NF2 with me. How would my treatment of this AN be different if I have NF2? Would I still not be choosing between surgery, radiation, or w&w?

[jami]

Hi All

Will throw in my .02. Background/timing/context for my experience is in my signature. Funny, i feel old school now! And a year ago i was going through a much different experience.

Cancer Survivors - I have seen some a few odd messages referring to that, it has been  due to the fact that radiation treatment/specialty is tied with cancer treatment. Sometimes my appts are in the cancer portion of the hospital, and when heading to radiation treatment, for sure. It puts everything in perspective when going for an appt/treatment, and sitting in a waiting room with people getting treated for some type of cancer.  Just ignore that.

Timing - o.m.g., it took so very long to sort things out. I learned we have to manage this ourselves, there no holistic end to end care, and connecting dots is all us. I made calls the day after each referral, not waiting for them to call me, and told them "I am very anxious, can we schedule our appointment asap?" I also used the online portal for the doctors i see to post questions when they came through. Things like "my head feelis like a balloon over blown'up" (i was such a mess before surgery) and getting the attention i needed.

Then all agreeing on approach and......it (surgery) is months out. It took a conscious choice to embrace the time given and breathe, relax, and be as ready and possible for surgery vs putting all on hold for the surgery.

Finally, I went to University North Carolina Hospital, and even though a university...it was an amazing approach. There were students during the intake and in pre-op, but my neuro-surgeon leads the overall Neurosurgery Dept, he is awesome.