- This topic is empty.
May 30, 2013 at 1:50 am #21320
Well had a 6 month check at surgeon/oncologist today. I have had headaches and generally not felt well for 6 weeks, maybe longer. Not sleeping well. Fatigued. Unilateral tinnitus for which my Audiologist and ENT ruled out any inner ear problems (I work in audiology).
So surg/oncol. wants an MRI of my brain. I am pro-active, so a believe any scans (periodically) are a good idea.
I also see my GP on Friday. My GP and a different surgeon (for the tumor in my pelvis) have been pushing for me to get a PET scan. I have to pay for this. I’d never make the list for the OHIP version.
The characteristics of my melanoma have a very high rate of recurrence (fully ulcerated, breslow 4mm, mitosis 15!!). I don’t mind paying the $2200-$2400 per year to get a once per year scan (although I live alone so it is a huge financial burden and I can only afford one or the other, once per year). However, my doc’s don’t agree on what type. Some say PET, some say MRI/CT.
Which should I do? My pelvis is well scanned because of the tumour there they keep scanning (that does not appear to be melanoma so far), and my brain is about to be well scanned by MRI. So I don’t have to pay for those.
But, for my chest/lower extremities, is PET scan reportedly better or MRI??? I need to figure out which way I am headed.
Anecdotals and opinions are greatly appreciated.
I would also borrow a ‘crystal ball’ if anyone has one…
AbbyMay 30, 2013 at 8:14 am #60972SusiesunsetParticipant
Hi, i’m living in France and from personal experience to make the diagnosis you need them all.
I started last october with a ct scan for a swelling in the groin area, followed with mri, Pet scan to confirm it was cancer and finally a biopsy to confirm it was melanoma. after my groin dissection I had a new Pet scan which showed recurrence in the groin area plus a couple of highlighted spots on spine and my other leg. A mri of my back ruled out cancer on the spine, and biopsie on both legs confirmed recurrence only on the initial area. Hence for surveillance And if you need to pay for it by yourself I would go for the least expensive. Here in europe pet scan is about 5 times more expensive. I have a friend who is folllowed by ct scans every 3 months as she is NED.May 30, 2013 at 4:18 pm #60973
Thanks so much for the quick reply. Valuable info.
Here in Canada you don’t get a scan unless you present with strong symptoms or a lump. It is re-active, not pro-active.
It is pretty expensive. There are very few private clinics and you still need an Rx etc.
Does anyone else have some experience to add? Still looking to pool several opinions/experiences.
ThanksMay 30, 2013 at 6:05 pm #60974Catherine PooleKeymaster
Tinnitus often has no explanation whatsoever! Seems like a brain MRI is a bit extreme diagnostic. I went through this last year and the specialist just said this ringing in the ears happens and to always have background noise going so it doesn’t bother you.
Docs tell me CAT scans are the best.May 30, 2013 at 10:48 pm #60975AnonymousGuest
My experience also is that the CAT scan is best for the “south 40”, especially with contrast.
Unilateral tinnitus could well be a trigger for a brain MRI, especially if your having balance issues and/or a unilateral hearing loss. That happenned to me 7-8 years ago and they indeed found a tumor (benign and removed) via an MRI but they swore on a stack of Bibles it had nothing to do with my hearing issue due to its size and location behind the maxillary sinus. My hearing got better in that ear a few weeks after the surgery…go figure.
JeffMay 31, 2013 at 3:34 am #60976
Interestingly, I work in Audiology. What we know about tinnitus in the last few years, is that it is caused by neurons mis-firing in the brain. That in itself can have many different causes. I’m not worried about the tinnitus. 20% of my patients have it to. It is the “unilateral” nature and the headaches and sleeplessness and general feeling of unwell. Those are all unsual for me.
I am quite sure there is nothing to any of this. However, my Onc wanted to do a scan, so why not? In Canada you don’t get any pro-active scans. They wait til you have a severe symptom or a lump and then scan to confirm. Re-active. So, if they want a scan, that can’t hurt to have on file for down the road, given the likelyhood of recurrence for me.
Thanks to all for your insight. Jeff, I’m so glad your hearing improved. Be sure to have it checked annually from here on out. If you come to Ontario, my clinics would do it for you, as a free service
AbbyMay 31, 2013 at 7:02 pm #60977Catherine PooleKeymaster
So sorry, I didn’t realize you had the other symptoms and also didn’t know tinnitus has different forms to it. I went through an ordeal with it last year, they tested my hearing (like a 20 yr old! yeah) and then they stuck this horrible probe up my nose. Then they said keep background sound on. I think it is from allergies..
But do find out what is troubling you Abby, I hope you can get the system to work for you.June 4, 2013 at 2:50 am #60978
Thanks Catherine. The system is slow in Canada. It works if you have symptoms. I think this brain MRI will come back fine.
For now, I am fortunate to live near the USA and have discussed with my doctor a plan. In addition to the brain MRI, in a few months I will have my leg and pelvis scanned by MRI. That was done almost 8 months ago. Once a year is conservative I think.
I will also pay for a PET scan. It will be a first ever PET for me. They can match that up with the MRI’s on-file to see if there has been any areas of concern pop up.
As long as I have a plan to be pro-active, I feel okay. As in other posts on this site, I am frustrated and feel alone when friends or family feel that this is all over with, as they ‘cut it out’.
My melanoma carries a large opportunity for recurrence. I do meditation, go to the gym 4 times per week, eat the hi veg/low red meat diet. My problem is I never sleep well and I have a stressful job, running 3 audiology clinics (a job I love, just hi demand).
Thanks again for the replies.
- The forum ‘Melanoma: Stage III’ is closed to new topics and replies.