Hi BevinSomerset,
I am so sorry for your ongoing neuro-difficulties and the ambiguity of what's occurring and which tx would be best must be terrifyingly frustrating. From skimming your posts on this thread, I wanted to first comment that it seems you're getting a very high level of care and are doing a great job of advocating for yourself - gotta give yourself tons of credit for that!
I had gamma knife to two brain mets in Sept 2015 at Mayo Clinic in Rochester, MN and have received a lot of care there over the years so thought I'd make myself available to you.
(women's health note: Mayo Rochester has the MOST phenomenal women's health department. ASK to be referred - unfortunately, it's still a best-kept secret. They are incredibly helpful with treatment-related side-effects and changes particular to women. I didn't realize how much better things could be. HUGE positive impact on QOL! Please pass along to folks being seen there.)
I'm very new to the brain mets world and so am not sure how much help I can offer, but happy to try - I'm always grateful to the folks who post - I learn so much and find it really helps alleviate stress.
Since dx (stage IV from the start 1/2014) I have sought out opinions at various institutions and have also wrangled with impossible question of the best time to break open the piggy bank/incur enormous debt. I hope you can use what I know about Mayo to help inform you decisions.
While I am thrilled with the care I receive at Mayo, my comment would be that as an institution, it tends to be fairly conservative and married to 'standard-of-care.' If you have access to a reputable institution in which you have confidence and still have solid standard-of-care options available to you, it may be worthwhile to exhaust those with less expense. That said, it's never too early to start the process of getting seen at Mayo. You can always postpone appointments once you've gotten on the schedule, and I've heard it can sometimes take ages to get 'in-the-door.'
If you're looking for something more like 'out-of-the-box'-type thinking, I'd focus more on finding a study and/or using the online trial listings to find a particular doctor/accredited institution doing something interesting. I have no idea about the differences in available treatments between the UK & US. Perhaps there's something offered as standard-of-care in the US that's not available in the UK? I would tend to think not, but I learn new things every day.
Like all places, your experience can depend on who you see. If possible, try to research who specializes in the direction you think you'd like to go - or try to get a recommendation for a medical oncologist who may be a good fit.
Regarding costs: fwiw, I've found Mayo to be fairly priced (for the US), their cost estimates for services accurate, and at times, the final costs were lower than estimated. This is not the case everywhere in the US. I've been there both covered by insurance and when paying out-of-pocket. Also, 'fairly priced' for the US may be dramatically different from the UK.
This is waaaay more than you asked for, but I figured maybe others could benefit. Please let me know if I can further help. Sounds like you're working hard to encourage things to move in a good direction & with all that's going on, that's incredibly impressive. Hoping for the best!
Mayo pros/cons - my experience is limited to the Rochester, MN campus:
Pros
- Mayo is the most patient-friendly major institution I've found in the US (and I've been to many). While everything isn't always perfect, there are things they do really well: I am consistently treated with courtesy and respect; appointments usually run on-time; they are responsive to my questions and needs; they seem to really try to be accommodating. Nicest employees, as a whole, from the top on down to the janitorial staff. Comfortable facilities
- Technically they are at the top of the game in the US. I have confidence that scans/tests/procedures are done and interpreted as well as possible. Top-of-the-line equipment, specialties, specialists, staff, training, facilities, safety protocols, etc.
- The doctors spend time with you. I have never felt rushed or left with a question unasked. I usually feel 'heard'
- Tumor board - multi-disciplinary round-table discussion of unique cases. When there's been a difference of opinion among departments, my case has been presented and I've always been pretty happy with the outcomes
- Collaborative - I've never had a doc who wasn't willing to graciously defer to and/or work with another specialty. I haven't found that to be the case everywhere
- Accurate estimates (actual costs are almost always less) and transparent costs
- Rochester, MN is actually pretty nice and very easy to navigate as a visiting patient
Cons:
- They tend to be extremely conservative and usually only entertain "evidence-based" treatment options
- Lacking in 'cutting-edge' and integrative care (although they do now offer acupuncture and have an integrative department, but I think you have to request to be referred)
- The integrative department seems to still be in its infancy
- The food and dining options are pretty disappointing. We bring sack lunch, etc. (there's a nice co-op grocery nearby & on-campus, I like the tiny cafe in Dan Abraham bldg - soups, salad bar, etc.)
- I've heard it can be difficult to become a patient
- Rochester, MN is not the easiest place to get to