A reluctant "Hello" - retinoma progression to retinoblastoma

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A reluctant "Hello" - retinoma progression to retinoblastoma

Postby rkeutzer » Mon Sep 20, 2010 12:23 am

Hi all.

Good grief, where to start...two weeks ago I was diagnosed with a "very, very fast growing retinoma" that "we will assume is benign" but "we will closely observe it for any growth and review our options in 6 months". :shock:

It started two weeks earlier, when I woke up with vision loss/double vision followed by a doosy of a headache from squinting. I casually brought it up on my fbook page and stated that I assumed it had to do with getting over mono. Fortunately, a paramedic friend said that vision loss is always concerning and to go to the ER immediately. I really didn't think much of it but I called up the optomotrist office just to be safe. Sure enough, they said ER stat and off I went.

At the ER, they treated me as if I had a migraine in hopes that the vision disturbances would clear. Nodda. The ER physician wanted me to see the Optomotrist immediately, but as I had an appt with him the next day, I was allowed to go home. Tuesday.

I saw the Optomotrist and he noticed a white mass on my retina, but because we live in a remote community, he didn't have the Retinomax to photograph it, so he asked me to go to his main office, in a city an hour away, the next day. Wednesday.

The next day, they fit me in and he photographed both my eyes. I remember him showing me what my normal eye looked like, then he brought up the picture of the one with the tumor. I remember my lower lip started quivering while he said that he was referring me back to my GP to get an immediate MRI as my right eyeball was protruding and he was concerned about how far back the tumor went and intercranial pressure. His office faxed the referral by the end of the day. Thursday.

In the morning, I called my GPs' office to make sure they received the referral. The assistant asked me to come down immediately as my GP wanted to talk to me. I went down to the clinic and they ushered me in to his office. My GP asked if I had the ability to go to a large centre right after the MRI to have a neurologist review the results and see me. I assured him that we already were making arrangements for the 8 hour drive. He ordered an urgent MRI, told me to demand the disk and recommended that I call the imaging department to make sure they received the request. Fortunately, I was able to get in on the following Tuesday. Friday.

My husband had to return to work to tie off loose ends until Monday. That weekend I was a wreck. My inlaws took our 3 children so that I could just have time and space to process everything. Friends were with me from the moment that I fell asleep on Friday night until the moment that I left on Tuesday morning. Thank you lord for my blessed friends. Saturday, Sunday and Monday.

We head out and make it to the hospital in time after a 3 1/2 hour drive and into another province. The MRI is done, I get the result on a disk and we continue our way to the major center, still another 4 1/2 hours away. My sister and BIL meet us at the hospital and take the children so that I could present to the ER and get in immediately. Tuesday.

Our 6 hour wait in the ER is frustrating but worthwhile because they find me a bed and admit me. The ER doc examines me but he admits that he doesn't know what he is looking for and refers me to the Eye Clinic internal at the hospital I presented to. I stay overnight, on morphine, that doesn't cut the pain. At noon, they roll me to the Eye Clinic for an appt with an opthamologist. Unfortunately, he had interns with him and they all got a look/see me and presentation. Then Dr. M comes in and says that he has reviewed the MRI and although the radiologist sent a report saying "Normal" he sees something that the radiologist doesn't. He highly suspects thyroid eye disease, writes up bloodwork and wants me to followup in his clinic on Friday. He prescribes some abx, steroid drops, T-3s' and says nothing about the tumor, dismissing it as a lesion. Wednesday.

Thursday was sleep.

My sister took Friday off so that my husband could come with me to the opthamologist appt. He reviews the tests with me, all normal, and is perplexed as my eye is no longer bulging. There is an increase in corneal scraping because my eye can shut all the way, but he just doesn't feel right in ruling out thyroid eye disease and says that he would like to refer me to a collegue of his that is a specialist in thyroid eye disease. His office writes up the referral and faxes it over but assures me that there is NO WAY I will be able to get in to see him within 4-5 weeks. Friday.

We were relieved that nothing was mentioned about the tumor/lesion and decided to take the chance of the children and I staying to try to get an appt with the specialist so that we didn't have to repeat this trip in 4-5 weeks. Saturday and Sunday.

I wake up and call the specialist office right in the am on Monday. His receptionist was a darling and worked me into his Friday rotation down at the Eye Clinic bright and early. Woo Hoo, the gamble paid off. Monday.

I homeschool our children, so this major centre is ripe with opportunities that do not exist where we reside. Tuesday, Wednesday and Thursday are spent doing day trips with the children to Conservatories and Galleries.

Friday morning comes early at 5:30. I make my 8:00 am appt easily. An optomotrist does the screening tests again, distance, color blindness, right eye/left eye testing. She consults with the specialist and Dr. W. comes in to examine me saying "Dr. M is concerned about thyroid eye disease, so lets have a look" Within 5 minutes he announces "no thyroid eye disease here" and leaves the examination room. I blink back tears of frustration as I've gone through all of this for nothing. So I go to gather my jacket and purse and am ready to get out of the chair when he breezes back in and says "now lets' take a look at that thing in your eye"

2 1/2 hours later of excruiating testing, (btw, an ultrasound of the eye IS as painful as it sounds) they escort me back to an examine room that they have held for me. "Hmm, that is odd" I think to myself. Then I reflect on that I didn't have to wait in line for any testing and was prioritized. I start getting a bit scared by now. The specialist Dr. W., comes back in and says that he would like a collegue of his to look at me.

His collegue comes in, introduces himself as Dr. M, a retinal surgeon who works with Dr. W., and would I mind if his fellow examined me before he examined me. Gotta love those teaching hospitals :rolleyes: He was rather rough as I remember pain and then Dr. M, the retinal surgeon comes in and examines me. The he and Dr. W and the retinal fellow all leave the examine room to examine the findings. I hear Dr. W say to Dr. M. "yeah, there is no calcification, I really didn't expect that as well as the amount of fundal growth". The rest I don't hear.

Dr. M says that he can find no reason for my transient vision loss or the headaches right behind my right eye and is literally dictating his report right in front of me. He then says that the thing at the back of my eye is NOT a lesion but in fact a tumor, that is very, very fast growing and exceedingly rare. He said that I am only the 3rd person he has ever seen with this type of tumor. Due to the growth rate of the tumor, he would like to see me back in 6 months and suggests that I have monthly retinal pictures to document the progression of the tumor. He said "right now we will assume it is benign" and how a fine needly biopsy would only either a) spread the tumor or b) ruin my vision, hence the wait and see approach.

His office assistants book me an appt and hand me his card. He is an ocular and orbital oncologist who just had me consult with a retinal surgeon. Nothing about that sounds good and I blink back tears as I find my way into the hospitals' chapel. The tears are free flowing by now and I am shaking, dumbstruck and a bit upset as I wasn't given all the information about WHO this specialist was. Friday.

It was the Labour Day long weekend so my husband drove down after work to spend the long weekend. When Monday came, we packed up and made the long trip home. He dropped us off at home and then proceeded to head to the city that he lives and works at during the week. Something went horribly wrong as I received an email, from my dh of 9 years, that he no longer wanted to be my spouse. :shock: :sad: :cry: Monday.

Today is two weeks from that Monday. I am so tired fighting the good fight as I haven't allowed myself to cry about it because I need to be there for my children. But I just got the diagnosis that is horrifying and I somehow need to talk about it. Hence my journey here. If you go this far, thank you for reading and God Bless.
Posts: 2
Joined: Thu Sep 16, 2010 11:46 pm
Cancer Diagnosis: Retinoblastoma
Relationship To Patient: Self

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