I think I got the original reference for that from a thread here years ago.
My oncologist insisted on a 2nd opinion. The treatment choice was reaffirmed and 10 years out, a success. The hospital also has a cancer committee that discussed each patient’s diagnosis and treatment. The doctors shared everything with me.
I hope it all works out for her. You are really between a rock and a hard place.
If your company insurance or EAP has a program for 2nd opinions, you might ask how it went or if she’s considered it. For melanoma, I’d do everything humanly possible, but I totally understand accepting what a doctor has proposed.
My concern with your friend’s doctor is not that the doctor trained in another country (be it Romania or anywhere else). Having closely witnessed stage 4 melanoma first hand, my significant concern is that her doctor is not a melanoma specialist. I don’t know much about other types of cancers, but my exposure with this one strongly indicates that your friend would be best served by a doctor who specializes in this specific cancer, works with melanoma patients on a daily basis and is up-to-date with all the most recent and newly available drugs and treatments. Even in just the three years my friend has fought her melanoma battle, there have been a lot of new drugs and therapies and she is often switch on and off them depending on her needs and side effects. I think it is really important to have a doctor with recent, specific, first hand experience with a large pool of patients fighting melanoma.
That’s the approach I would take in suggesting another opinion, and I definitely think you should talk to her ASAP. I wouldn’t wait for Christmas based on my friends experience - she was given 3 WEEKS to live at her diagnosis (she had stomach pain, not back pain, that prompted an ER visit and led to diagnosis) and the melanoma specialists at NYU got her on a targeted therapy immediately and she is still here fighting 3 years later. She says all the time how grateful she is they got her on that drug so fast.
This specific question really hits close to home for me, and I wish your friend all the best.
@rockvillemom , First of all, thank you for being there for your friend as she goes through this journey. You’re right that she should seek a second opinion. It would be ideal if she could be treated at a melonomia center. That said, I’ve been in her shoes. Went through breast cancer determined to handle everything locally because I didn’t want it to disrupt my life so much that I would have to stop working to undergo treatments. Family and friends called encouraging me to go into Boston for treatment or at least a second opinion and I wouldn’t. I felt like calling the shots on my treatment was the only power I had. When I finished my treatments and was having a final visit with one of the surgeons, he made me promise that if I ever should develop cancer again, I would go into Boston.
Fast forward 6 years and I’m diagnosed with stage 3 melanoma. The dermatologist immediately booked an appointment for me with Massachusetts General Hospital Melanoma Center. She apologized for not asking me first but said it is the place to go for melanoma. Can’t believe the difference in experience. Everyone is so professional. I’ve been on opdivo since April. Full blood work every 2 weeks to monitor reactions to the meds. Much of the research on opdivo was done at MGH so they are so cautious about making sure there is no “autoimmune” response. And yes, this medication has had a 30 to 45% success rate in shrinking tumors or getting stage 4 patients to neds (no evidence of cancer detected). If the opdivo doesn’t work, they have other combinations of drugs to target the melonomia. As it is a major research center, trials of new drugs are also available.
Does your friend go to the doctor alone? My husband is able to come with me to my appointments. It’s been critical to helping clarify what the doctor is communicating. The cancer diagnoses is such a shock, your brain shuts down as you try to take it all in. Would your friend be willing to let you tag along?
Keep encouraging her to get that second opinion. Know that you are doing it for all the right reasons. She may be annoyed with you but so what. She needs the best care available. You need to know you’ve done everything in your power to help her out. I’ve lost a cousin to this awful cancer when she was only 50 years old. Now there is hope.
All the best to you and your friend.
Thank you all for the input. She cannot drive due to the pain meds - fentanyl patch and oxy - so her only local relatives - a cousin and an aunt take her to her appts. I know the cousin has been very helpful as far as helping schedule and keep track of appts.
@mysmom - I am glad to hear you are also on Opdivo and wish you the very best results. I wish my friend was at a melanoma specialist, but at least the immunotherapy drug she is on seems to be a good treatment option.
I’m going to see what happens this week - what other test results she gets - and then go from there.
Please don’t proceed with the assumption that not US trained equals inferior doctor. It’s simply not true.
That said, I agree that your friend should seek treatment from a facility that specializes in melanoma. And once she gets there, she may indeed encounter excellent melanoma specialists who trained in Romania or other parts of the world. The US doesn’t have a monopoly on excellent medical schools and training.
My kind of leukemia is pretty rare. My first one only had four patients with it. I switched to someone who sees many CML patients and who has stayed involved with trials, etc. Definitely would want to see a specialist in the specific type of cancer and who access to other resources as needed.
One of my docs is from Croatia, where she earned her MD/PhD. She’s the first cardiologist in 6.5 years who has understood both the implications of my leukemia meds and my cardiac stuff. Oncocardiologists are hard to come by, and she has been fabulous. She also teaches at Georgetown Med School.
I got three opinions for my breast cancer. I was psychologically stressed at the time by the cancer and also a medical issue with my daughter. I think that your friend may be overwhelmed and sticking with a kind doctor she likes gives a feeling of security.
I am normally efficient but I dragged my feet and finally got myself to the other docs/clinics, which also involved dealing with medical records and getting pathology samples sent all over the place. It is really tough when you are in the middle of it.
One thing that helped me was researching doctor reviews online. I wonder if she would allow you to find a doctor for her, so that making an appointment is easy and streamlined. Also, the second opinion can be presented as enhancing but not replacing treatment currently received, and the doctor she likes so much can maybe set it up so he/she consults with the melanoma expert.
The American Cancer Society has volunteer drivers.
You are a good friend in a tough spot. I would offer that very specific help since she doesn’t want to spend time online.
I didn’t mean to offend anyone with my comment about her doctor being educated in Romania. But when I look at his online bio, I see a general oncologist in a practice that features medical oncology and blood disorders. Nothing in his profile suggests any special expertise in melanoma. I see nothing about research, papers published or teaching.
I guess I am also wondering if any type of language issue led to her believing he told her the cancer is 100% curable. Did she misunderstand? Did he mispeak? It’s going to be hard to suggest a 2nd opinion when the oncologist she likes and trusts has supposedly told her her cancer is 100% curable. All of you who have any experience with cancer know there is no way that is true.
A few more details to give more context:
My friend is 54, divorced and has no money. She was living paycheck to paycheck before this happened.
She is giving up her apartment at the end of the month and moving into her cousin’s house - in their dining room. Yes, you read that right. The only spare bedroom they have is on the 2nd floor, which is too difficult with her back. So, after xmas, they are going to turn their dining room into a bedroom/office for her.
Her entire life has collapsed since September.
She is a very outdoorsy person who loves to hike and take her dog on long walks. Now she has friends walking her dog as she is unable to do so herself.
It’s easy for me to sit in my comfortable house with my husband in the next room and say she should do x and y, but I do understand that I cannot really comprehend what she is going through and if being a positive spirited trooper who assures everyone else that this is not a big deal is what gets her through the day, who am I to rattle her world?
Our office just took up a collection and sent her about $1000.
Before she decided to give up her apartment, I was going to offer to pay a month of rent for her. Instead, I sent a gift bag of comfort items, not knowing what else to do.
So, we’ll see what happens this week.
If you have any other ideas of what I can do, should do, besides gently encouraging her to get a second opinion, let me know.
It could be a language issue. But it’s also highly likely that it was a comprehension issue based on your friend’s mental and emotional condition. She is probably hearing what she wants to hear. That is understandable but not necessarily totally useful.
@rockvillemom I’m on the board of an organization that provides support services to people going through cancer treatment–support groups, oncology massage, acupuncture, nutrition, expressive arts therapy, gentle yoga, meditation/mindfullness sessions, etc. It’s free if you can’t afford to pay. All of our therapists are trained in supporting cancer patients. There’s scientifice evidence that suggests these support services can help improve the quality of life for cancer patients as they go through therapy. If you can find such support center for your friend offer take her there; you will be providing her with resources. that could be incredibly useful to her as she starts on her journey. You’re a good, caring friend. That’s important. I just lost a friend of 30 years to ovarian cancer. I think the best thing I could do was to be there for her when she needed something.
That would be my first call. And second would be Sloan Kettering.
@Bromfield2 - excellent suggestion - I had no idea such a thing existed. I’ll see what I can find in the Frederick MD area.
It’s a hard position to be in. A very close friend of my H has a very rare cancer and he gets it treated locally. My H and another close friend have pushed him to go to a specialist who treats his form of cancer but the friend is stubborn. He did at least agree to have the initial surgery done out of town by one of the few surgeons in the US who have operated on this type of tumor but elected to not have his follow up care done out of town. He doesn’t take anyone to the Dr with him. It’s been hard on those of us who care about him but we have had to let it go. We offer to take him out of town, to research newer treatments to reach out to contacts we might know but that’s really all we can do. I do what I can do which is to give him some healthy meals each week.
My sister is a Melanoma cancer survivor of over 20 years. When she was diagnosed with a metastasized tumor she went to City of Hope to hear about a trial. She wasn’t happy to hear at that time that one of the risks in that trial was that you might be the participant who did not get the drug. At that time survival rates were extremely low. Her local oncologist agreed to prescribe the trial drug at the trial dose for her. She was lucky that her insurance at the time agreed to cover the cost. In her case the local oncologist saved her life. The trial drug at that time was a high dose injection of Interferon.
Could it be that your friend is overwhelmed and not able to even think about the effort it would involve to get another opinion. Would offering to help research options and offering to do the work involved in getting records sent be an option. Maybe she would be open to that option if she felt it didn’t involve a lot of energy on her part.
OMG look what I just stumbled across - there is a hospital right in Frederick MD that is affiliated with MD Anderson! I am going to read more about this and add this to my Dana Farber idea. Why on earth did she not go here to begin with? You know why? Because a friend on fb referred her to her present oncologist!
"MD Anderson is a national leader in cancer care.
The University of Texas MD Anderson Cancer Center in Houston ranks as one of the world’s most respected centers focused on cancer, patient care, research, education, and prevention.
Learn more about MD Anderson by visiting MDAnderson.org
Our MD Anderson Cancer Network® affiliation brings a higher level of cancer care to you.
Frederick Regional Health System is the only health system in the state of Maryland to become a certified member of MD Anderson Cancer Network®.
As a certified member of MD Anderson Cancer Network®, a program of MD Anderson Cancer Center, our cancer treatment team has access to:
The latest technologically-advanced treatment options
Leading-edge research from across the nation
A multidisciplinary team of cancer care providers
Disease-specific, evidence-based guidelines, treatment plans, and best practices
Second opinions from nationally recognized physicians certified by the network
A peer-to-peer consultation with MD Anderson faculty is just a phone call away.
Our team of MD Anderson Certified Physicians review your diagnosis with a fresh set of eyes, and utilize their specialized access to MD Anderson’s innovative treatment pathways and guidelines to conduct their evaluation. Ultimately, your diagnosis is reviewed with an MD Anderson cancer expert before a final diagnosis and recommendation is made.".
You said your friend was on fentanyl and oxy, and who knows what other medications. My bet is the oncologist never said it was 100% curable.
She’s hearing what she wants to hear. My friend gets scans every 3 months and when they are clear she tells people she is cancer free and then, inevitably, at the next scan she has some additional tumor or complication. Rinse repeat.
The 5 year survival rate for stage 4 melanoma is around 15%, but my friend can’t think about which I understand completely. She has to focus on her survival and hope and plan for the her future. I have been impressed by her bravery every day.
My husband had stage 4 cancer. We went to MD Anderson for a second opinion and stayed. Best decision we made.
This.
Long distance consult with Dana Farber also an excellent idea, particularly if she could stay with her mother if she deeded to visit.
My oncologist SENT me to Dana Farber for a consult before embarking on a course of treatment. They reviewed my pathology, performed more extensive genetic testing, etc. (The Dana Farber doctor concurred with his plan.) A good doctor will always be on board with a second opinion from a major cancer center.
As Lila1212 says, there are many new drugs and therapies for melanoma, and the immunotherapy field is developing rapidly.
I would absolutely advocate that she go to one of the major centers immediately. It is quite possible that her doctor routinely works with Hopkins or one of the others. She should ask him right away.