May 5, 2018 at 8:25 pm #96931middlesister1Moderator
I’m sorry for the late welcome- I haven’t been on the board much lately. It sounds like you have a good treatment plan moving forward- and ideally surgery will be in you future. As we learn with this disease since it is so rare, we have to at times be our own advocates and learn as much as we can. Going to a general oncologist vs one who is familiar with CC can affect survival. And, like you, my Mom’s CC was caught by her GP being very thorough and following up on liver number which were slightly elevated.
Since my mother was diagnosed in 2013 there are many more treatment options. She was given 12 months to live in Nov 2013 and we just returned from a resort in FL where we all went for what we thought was her “last hurrah” in spring of 2014. She had chemo, Y-90- went into remission for a coupe of years, and recently finished up proton radiation. Although surgery is the hope, targeted treatment can give great results too if the cancer is localized.
CatherineMay 2, 2018 at 7:33 pm #96919jpmskiParticipant
You got a pretty important education with the oncologist at MSK, and don’t forget it. We all make assumptions about doctors and hospitals that don’t serve us.
If I was you I would stay singularly focused on finding a surgery that says we can get it. Again, we assume that if one surgeon says X every other surgeon is going to more or less agree that it’s X, plus or minus a small margin. And it’s just not true. I would make a big bet that if you showed the same doctor two sets of identical medical records with different names separate by one day, you won’t get the exact same take.
I had a surgeon in Denver (someone every other doctor said “he’s amazing”) tell me that my mother’s tumor was inoperable, definitely. To the point of being a dick and telling me I could get 2nd opinions but they’d all agree with him. I sent the same exact information to a surgeon at USC a couple of months later and they said, “We can totally get that. I don’t know why your doctor is telling you he can’t.”
The head surgical nurse at USC told me something I won’t forget, she said you want your doctor to tell you they can’t do it because it means he or she can’t do it, and you can move on to someone else. Beyond the education part of the equation, surgery is all confidence and experience.
Do what your doctors are telling you to do now, but I would be constantly ‘shopping’ your medical records to surgeons around the country. You just need 1 to say yes. But you need to be exceptional organized.
JoeMay 2, 2018 at 1:47 pm #96916KatemarykateParticipant
Ditto! Adding a big cheer along with everyone else.
My husband is 9 months in from a pretty horrendous diagnosis. PSC with CCA. Keep pushing and don’t accept non-answers. I asked the following questions:
1) How many CCA patients do you have, active and in the last five years?
2) Do you attend conferences with subject matter experts on this cancer?
3) What trials are coming up and what is your exposure to them?
4) Does your support team (GI doctor etc) have exposure and active patients with CCA.
And I keep asking questions. I ask on this site, I ask on other sites. AMMF.ORG.UK and the Macmillan Cancer site.
I wish you all the best and have learnt that everyone has a different journey with this cancer-so don’t let statistics or doom and gloom get you down.
KateMay 1, 2018 at 8:01 am #96910lilitmParticipant
I am so deeply sorry for what you are going through. I want to add my encouragement and support for the way you advocated for yourself!
I am constantly frustrated to tears at the way oncologists have treated my beloved, still-young, athletic dad who got a shocking stage 4 diagnosis out of nowhere. Especially at MSK, I have lost so much trust in everyone. If you don’t mind sharing who the caring oncologist at Columbia was, I’d love to know for potential future 2nd opinion.
You can absolutely beat the odds! I read the book “Radical Remissions” and it gave me hope to know that others have beaten the odds. The first oncologist who saw my dad said he gives it 10 months. Well, here we are 14 months after diagnosis, and I hope for much, much more. If you saw my dad on the street, you’d never guess what he’s going through. There are some days where he’s recovering from chemo, but on others he goes for 20 mile bike rides, long walks, plays tennis… He did Gem/Cis for 11 months and is now on Folfiri for the past 2 months and counting. I will share everything we learned so far in case it’s of any help:
We are trying to leave no stone unturned and after much research, I think a multi-pronged approach is our best bet – so we’re doing chemo, acupuncture, recommended/safe supplements (vitamin d, curcumin, etc), CBD oil and medical marijuana, plant-based healthy diet, he goes to therapy to deal with emotions, writes in a journal, exercises whenever he can… pretty much everything that might help and can’t hurt. As much as you can de-stress and enjoy life – connecting to nature, laughing at a comedy tv show, and of course being with loved ones… those seem to help on a deep level.)
If you can get a biopsy, ask your doctors to send the tumor tissue for genomic testing (for example at Foundation One). If you have high microsatellite instability, DNA mismatch repair, high tumor mutation burden – you may be a candidate for immunotherapy. Or if you have targetable mutations, then maybe you can do a targeted therapy.
I recently learned about the drug sensitivity testing that Dr. Nagourney or Wiesenthal’s labs do, but I’m not sure yet how helpful it would be. Also in our case I don’t know that the laparoscopic biopsy would be a good idea at the moment…
More things that help my dad do well with the chemo: drinking tons of water (also protects your kidneys). Ginger and CBD oil/medical marijuana. Going for a walk even if he’s tired (it helps fight fatigue). I recently read from an NCI study that Wisconsin Ginseng helps with chemo-related fatigue.
All my warmest wishes, with love to all
LiliApril 26, 2018 at 6:56 am #96893molly_mayParticipant
You are off to an excellent start, as you learned very quickly that you must be your own advocate, and do not accept anything less than working with providers that are willing and able to give you answers. I am just astounded by the incompetence I have seen in the medical profession. I had to laugh at the “pancreas or cc” confusion, as my own ONC, still after all this time, refers to mine as pancreatic cancer, and when I correct him, he says “same difference”. No, its NOT. Anyway, you do need to “drive your own bus”. If you find good people, stick with them, and accept nothing less than their best. If they can’t answer your questions, keep asking for someone who can.
Lastly, the statistics are outdated. I had two ONC’s in the room when I was given those statistics. The second one said, “wait, there are more options and more therapies now , plus clinical trials”. I don’t know why they feel compelled to give you those numbers, but we have ALL heard them, and MANY of us are alive, and proving them wrong DAILY (for me, this was almost two years ago and I’m still going strong.)
Hang tough, and keep up the fight.
MollyApril 26, 2018 at 5:23 am #96892herculesModerator
In my opinion, you have done all the right things and I salute you for just going around people that were not helping you and finding help. You are your own advocate, and yours is the only voice that can be heard so kudos to you for speaking up. Sometimes even the best hospitals can be overburdened and your choices are good, your pcp is your best ally, he has helped you big time. There are stories here of others that found treatment and sometimes, not often enough, surgery can follow. It is possible that a small fraction do have positive results from chemo and become operable, it is something to hope for and it hurts me when patients feel there is none, You went to a top rated hospital and were treated like you were spun in and not looked at carefully. You seem quite knowledgeable regarding cc and this helps as you seek an effective treatment, MD Anderson in Houston is a top cc hospital, and time is a factor, we generally recommend second opinions and insurance is another whole problem. There is much to learn here and the best cases are found by accident. Good luck and welcome, I am sure others with similar conditions will chime in, my best, PatApril 26, 2018 at 1:50 am #96890RedbearnyParticipant
My cc was literally caught by accident. I have an old school doctor in his 70’s who does a beyond thorough annual physical exam that happens to include abdominal ultrasounds. I went on March 3 and got called immediately on March 5 to be told I needed a Stat CT Scan, because he saw a mass that was not in the ultrasound from last year. I had the scan 2 days later and a mass was confirmed in my liver. I had to wait a week for a biopsy, as I was taking low dose aspirin daily. I also went for an upper endoscopy for what I though were unrelated stomach issues. The endoscopy was clear. My GI doc is also old school in his 70’s.
The biopsy came back and the first words of the first sentence contained “pancreatic or billiary”. My GI doc immediately called the pathologist for better clarification. The pathologist felt billiary, but because the cells are almost identical, he listed both. My CT showed a clear pancreas. I was then sent by my GI doctor for an MRI MRCP to get a better look at all the areas involved. It too showed a clear pancreas, but more smaller masses in the primary billiary ducts of the liver and one swollen lymph node nearby.
My regular doctor had already sent everything to a surgeon at MSK. He said it was not surgical and referred me to an oncologist. The oncologist saw me a week alter, so about 3 weeks passed so far with people throwing pancreatic and liver cancer around. I met with the oncologist at MSK. What was disconcerting is that although they had my files and slides for a week, she had no reviewed them until walking in the room. She read that first sentence of the pathology and said “I see you have pancreatic cancer that has spread to your liver”. I freaked out and my wife nearly fainted. I then calmed down and said to the doctor, READ the report again, carefully, then look at the CT and MRI reports and scans. Her response was “Oh, I see. The pancreas is clear. You have a point”. I felt like I knew more than she dis. This is world famous MSK….SCARY. She then said I needed to get a port and schedule chemo for the following week. When I asked what chemo, she was unsure (probably one of two types), but would present me to their cancer board for review and let me know. They would call me in 2 days and give me the results and a diagnosis, as they had not yet read the slides either! I walked out with my mind blown.
I immediately called my GI Doctor and stated that if I stay with MSK, I WILL die for sure. He was stunned but asked me to allow him to contact a well respected surgeon to get me the best option and recommendation. Two days later, he gave me a name and contact for a well respected oncologist with experience in cc and my best chance in his opinion. I tried to get an appointment but she was solidly booked and could not see me for 2 weeks. I called the GI doctor back and he called her himself twice. She called me at home in the evening 2 days later on a Friday. I had already sent all my files. She went over everything in my file as well as all that happened. Her immediate response was to get me in next week on Tuesday with one of her team (her husband) and get me moving forward. She would squeeze me in no matter what. This is at Columbia-New York Presbyterian in NYC.
I went on Tuesday and first saw a Fellow working there who was very well versed in my case and confirmed they felt the diagnosis was cc. Then the 2nd doctor came in with whom I had the actual appointment. He went over details and confirmed he was in contact with his wife about my case. She called 3 times while I was there asking questions and telling them what she wanted, as well as telling them to make sure I start chemo and meet with her no later than Wednesday the next week. I was also asked if I would give permission to screen me in advance for a clinical study in case the chemo was not effective. They were trying to stay ahead. I think a lot had to due to the fact that to all who meet and see me, I am healthy, have clear blood tests and liver functions. Other than some slight stomach issues and some fatigue (not sleeping well). I even passed a full volunteer FD Physical last week with flying colors.
I have started chemo of Gem-cys and my 2nd treatment was today. The immediate goal is to shrink everything for a possible surgical option, or see effective change from the chemo — either way praying it works. I asked and was told reality. On average, with chemo only, if it is just holding things at bay, most only last 1 year. Those with surgery stand better odds. Being strong, determined as well as hopeful, I plan to beat all odds and go for full remission or surgery and remission. There is no other acceptable outcome in my book, especially at age 56. I just got married 6 months ago as well after living together 7 years. I plan to be around at least another 25+ years.
Sorry for the book here. It felt good to vent a bit. I am VERY open to suggestions, ideas and more. I am still working full time on the road as a salesman. I have placed my volunteer FD, Ambulance and Deputy Sheriff work on hold during chemo. I go for a follow up CT on 6/13 after 3 rounds of chemo. I go 2 weeks on (1 day) and one week off, so I completed round 1 today.
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