About the Romanian doctor: it’s not where he originally got his MD degree. It’s what he’s done since, the level of additional specialization studies and practice, where that occured, certification, and how he practices (not the “nice” part, though that’s a comfort for many patients.) Even if she goes to a hot specialty center, she may find docs with initial med degrees from 3rd world countries. She still needs docs who make time for her, will respond to issues quickly, explain understandably, and more. This isn’t just the disease, it’s also the patient needs. A delicate balance to achieve.
I won’t go into the details, but I have recent and personal experience with a loved one getting a diagnosis like this.
I agree with @intparent - “Bottom line - you can suggest and offer to help. But you can’t decide for her, and you need to be respectful of her autonomy.”
It is not necessarily the case that getting the best oncologist will change the outcome of the cancer. Every individual responds differently to the available treatments; some are very lucky, others are not.
To insist on a second opinion and give her the impression that she is doing the “wrong thing” by working with a doctor who may be Romanian but who is board certified the same as any doctor in the USA will just add to the stress of dealing with a situation which is unbearable but must be borne anyway.
I am so sorry, rockvillemom. I agree with you that your friend ought to get a second opinion at a big, national cancer center.( I have been down this path and that’s what we did and H is still here 20 plus years later.) However, this is ultimately your friend’s decision and more factors than her physical health will come into play here. She may not have digested this news fully. She may be clinging to this doctor as a source of comfort because she likes him and makes her feel less afraid. You can suggest and offer to help, but you can’t make her get that second opinion.
I agree about putting her in touch with other patients. They might mention better treatments and newer protocols and seeing their examples might get her to try something else. Heck, they will at least know how to handle some of the treatment side effects. We got some good advice about lymphedema and the effects of the chemo drugs way back. She might say no to this idea, too, but at least you tried.
My final thought is to be ready if she changes her mind. H had some big swings in mood and opinion during his treatment. We had a trip to MD Anderson all of a sudden after he read about a new treatment there, this after already seeing Sloan Kettering. I am most concerned that the doc said her disease was 100% curable. That isn’t right. I’d be worried she is hanging on to that statement as a lifeline. My H did something similar when his surgeon made some sort of offhand comment about not seeing any more cancer before we got the path report. I took the comment to be encouraging but not dispositive. H took it as the final word.
I really appreciate all of the opinions and advice.
My friend is also my very close co-worker/assistant, so I know the health insurance is decent, but I do not use it and do not know what would or would not be covered if she were to travel out of state for treatment.
I am 100% on board if she were to take a leave of absence for treatment. I’m actually working this afternoon to catch up as she was out yesterday and I am willing to continue to do so. Right now, she seems focused on minimizing her illness and working as much as possible - her presentation goes along the lines of, “I have stage 4 melanoma, but it is 100% curable, and all I have to do is get an IV every other Friday for 30 minutes, and I’ll make up that time”.
She is waiting for BRAF results.
She has a good relationship with her mother and staying with her in Boston would be fine. Ironically, her mother is finishing up her own cancer treatment and friend stayed with her mother for 2 weeks in June and again in August to help her out. This was before she had her symptoms or her diagnosis.
After reading the responses here and discussing with others, I am pretty settled on visiting with her in person after xmas (she has been working from home the past 2 months as she cannot drive due to pain meds) and suggesting a 2nd opinion from either JHU or Dana Farber, and then I will respect whatever she decides to do.
@Lizardly - you are so right about her clinging to her dr - because he is so nice and because he is telling her what every patient would want to hear - your cancer is 100% curable. Maybe he said 100% treatable and she misinterpreted it as 100% curable - I don’t know. I wish I could ask to take her to an appt - but I am very limited in my driving due to my eye problems and cannot drive to Frederick.
She’s been a great support to me with some of my issues and my stuff is not life threatening, just a PITA. I just want to be there for her and since it is hard for me to be there physically, maybe I can be the online researcher, if she will let me.
@surfcity - thanks for the link to the melanoma support group - I may suggest it - but doubt she would do it. She has specifically stated she does not want to research this online. She was in terrible pain in October and November before having an accurate diagnosis. Now that she has much better pain mgmt and a dr who says it is 100% curable - she’s essentially all set in her mind. She told me she feels guilty because her course of treatment is so easy compared to others who need chemo and/or surgery. Again, whether it is denial or her way of coping or a complete misunderstanding of her situation I don’t know.
Are you her manager? (Couldn’t tell
from the description). Because that adds another level of complexity to her reaction.
Even if not, many people draw the line at bringing a coworker into the minute details of an illness that affects their ability to do their job. It is their livelihood (and their link to health insurance, without which they literally might die). She may be presenting a bit breezily to you because of your connection to her employment. I probably would… even to my closest work friends.
I am not her technically her manager, but the senior member of a small department. She has been very open about what is happening - with myself and 2-3 other employees. We are a small company and many of the employees were referred in as friends of current employees. I know her schedule for every test, scan, treatment and procedure because she has to include me in her requests for time off. She certainly is under no obligation to tell me her test results, but she has been doing so. HR and the company owners are aware of the situation. She is a valued employee and is at no risk of losing her job or health insurance as far as I can tell.
When this all started back in late September and continued into October and November - first viewed as back strain - and she was being given muscle relaxers and sent for pt - I was the one who kept insisting that back muscle strain should not cause two months of excruciating pain with no improvement- and I repeatedly pushed her to get a MRI - which finally happened in late November and was the start of the stage 4 melanoma diagnosis after it showed a mass on her spine.
She is probably one of the closest confidants I have in my life, maybe the closest, and I believe it is mutual. Even though she works remotely, we talk and text throughout the day. I tell her every day that if she is tired or needs a break, since sitting at a computer is hard on her back, to just let me know and I will jump in and finish whatever is needed. So, I guess we are co-workers and work friends, but it feels like more than that to me.
I get all my medical and dental treatment in Romania. In terms of quality of basic medical education it is far from a third world country. With free exchange of training around EU you can find top specialists too.
@rockvillemom you are in a tough spot. I have dealt with family members who don’t want to be their own best advocates. There is a wealth of info out there and your friend has access (at least logistically) to two good hospitals, but if she doesn’t want to go then she doesn’t want to go.
I think it’s harsh to say that someone who doesn’t want to seek a second opinion is not being one’s own best advocate.
Applying logic, thinking rationally, seeking more information (with the view this will give you more control over the outcome) – may or may not be helpful when you are facing your mortality, when you must start coming to grips with the inevitability of your own death.
“Getting better” is only one part of living with a stage 4 cancer diagnosis.
Some people do cope with the fear by living in denial. I wouldn’t judge them for this.
I finished cancer treatment this March - 2 surgeries, 5 months chemo and 33 radiation sessions. Until you’re in it, you can’t even imagine. It’s just so all consuming, terrifying etc.
I got a second opinion immediately. I live in the Philadelphia area, which has premier cancer centers, thankfully. There was no way I was not going to get the best treatment I could. There were people there from all over the country. So many people I spoke with feared the cost because of their medical benefits or lack of, but these centers have wonderful advocates.
If she has no one to go to appointments with her, maybe ask if she would like you to go - so much just isn’t heard by the patient for obvious reasons.
I truly hope she beats this - cancer is such a beast and I hate it!
@fendrock sorry if my comment came off as harsh. What I meant was, I have had family members who ignore medical advice or don’t follow up on things and then get upset when their health declines. It is frustrating for the friend/family member to watch this, but of course everyone is entitled to treat their health as they wish. Maybe this person knows more than she is letting on and just wants to keep that to herself.
@surfcity - thanks for the link. I have to go back and watch the webinars.
I’m not addressing anything with her until after xmas. By then, she should have the BRAF results and may have some additional results after her 2nd Opdivo IV.
If anyone I know (including a coworker) was diagnosed with the type of cancer my husband had i would absolutely 100% suggest they go to a major cancer center that has a lot of experience dealing with it. My husband is a 7 year survivor for a cancer with a very low survival rate - he’d have been dead within months if we’d stayed with the first oncologist he went to. I had done a massive amount of research by the time we met that first doctor so was spelled by him - but I know not everyone does that (my husband certainly had not). I couldn’t live with myself if I didn’t at least make the suggestion. Once I did then i wouldn’t push it but would support whatever the person decided.
"The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery " by Lipska PHd.
Of course your friend doesn’t have metastatic brain cancer but this book (fairly short read) was particularly interesting because it was written by a neuroscientist who had brain cancer. She knew a lot of medical specialists and was focused on getting the best care. Her standing probably opened doors to doctors that would be closed to many of us.
But. relevant to this discussion…
What I found most interesting when it came to getting second (and 3rd, 4th) opinions was that none of the doctors involved discouraged opinions but still clung to the view (even after her miraculous recovery) that their original view/diagnosis/treatment was the one that was correct and downplayed some of the treatments that she ultimately underwent and she personally felt were most beneficial.
Her own evaluation (she of course did a lot of her own research) thought one particular approach saved her–while her original doctor (who was her rock for the most part) did not think so at the conclusion. She was glad she was able to explore the other options.
I would discretely and gently ask if a friend was aware of other options. (Eg, “Have you considered JHU?”) Sometimes, it does open a conversation, you become an ally in the fact finding and thought process. If turned down, I’d also close with, “If you ever DO need someone to hash it out with…”
That’s different than demanding and seeming to judge. Don’t forget that, though fast action is a good course, the MRI was in November.