One patient with glioblastoma still alive nine years later
by Holly1127 on Thu Feb 09, 2012 11:20 AM
had his scan it showed left lobe of liver3.1x4.1 cm, right lobe3.5x3.5 cm 1.4x2.03 cm adrenal. plus in left lung, lymph nodes, ileium and still have in colon. The cancer is metastaticized everywhere. He has laid for three days just sleeping all the time. I.m going to take this as bad but not sure how bad. Can you please enlighten me on what this scan has shown? the doctor didnt tell us really anything. i started asking questioned and he seemed he got pissed off and was annoyed by my questions. hope everything is going good for u and your family
by courage819 on Thu Feb 09, 2012 01:21 PM
Hi Holly, I'm sorry I don't have any Idea but maybe someone from this group can let you know. I have the same issues with my husbands oncologist. He seems to get his feathers ruffled when I ask questions,look to him for some kind of answers. They do get pissed off, like "how dare you question me". That is why I'm taking my husband for another opinion. A new group of doctors, maybe a fresh look. If I have to keep quite and not ask questions or get shot down when I ask about different treatments I looked up or someone had mentioned to me, then its time to take my husband and move on. Let me know how your doing Holly. Take care, Vicki
by thebyrdsfriend on Thu Feb 09, 2012 03:19 PM
I'm a firm believer that you and your oncologis, or even your doctor should have a good relationship. And that includes being able to ask ANY and ALL questions you may have without feeling you are stupid, or made to feel you are taking up the doctors time. We must all remember they are working FOR YOU! You are not seeing them as a favor to you, you are PAYING them for their advice, knowledge and wise counsel.
I don't know why type of treatment center either of you are going to, but I think it must be the wrong one. A teaching/learning hospital has specialists in just your type of cancer, and they are the most caring sincere doctors I've ever met. They are working there because they have a passion for research, treatments, and cures. If you go to your small hometown cancer center, odds are there is an oncologist that treats ALL cancers, and he just follows the "normal operating procedure". Teaching hospitals cost no more than any other cancer treatment centers, yet they are in on the most up to date procedures, treatments, and clinical trials.
Having said all that, they also take time to answer any concerns you may have. They also take the time to explain all details of your scans, your treatments, and your medicines. You are NEVER left in the dark, or made to feel like you are imposing on them.
So, I would suggest to both of you to get another opinion. I myself ran into the same thing in my small town. I am so glad I sought out another opinion. I hope you both find a good cancer treatment center to go to, and I hope you find the answers you need. No one should EVER settle for a non answer. You should INSIST the doctor spend time explaining EVERYTHING to you. If he doesn't, don't move out of the room. YOU ARE PAYING HIM - AND HE WORKS FOR YOU!
by SpringFlowers on Thu Feb 09, 2012 04:38 PM
Yes, heed the advice, Ditch that Doc! No one should ever speak to you so rudely; especially as mention, you are paying to be insulted???? Heck, i'm on my 7th oncologist! At last found one that is fantastic. Not only can I ask him anything, he looks and listens to me, then very politely discusses...doesn't dictate! If I suggest something, he is very attentive, says well, these are s/e's, these are drawbacks, but then these are the positives, so if you want to try, ok....That is sign of very considerate and caring physician. They should all know, WE are already stressed either with this disease (mine, br/cancer) or we are caring for a loved one with the beast...as I call it. When first onco doc's had me all set on THEIR schedule and treatment, without consulting my opinion, I asked about Laser Surgery, (which I opted for and great results...i'm now body NED, only tiny spot in my spine which we are continuting to work on, I may opt for Exablate). But, the oncologist didn't even bother to look up from writing and very dismissively replied " Who do you want to cure you, some Voodoo Witchdoctor you found on the internet or ME?" --- Well, I choose the info I found on the internet! #1, Geez, aren't we told there is NO cure for cancer??? Dr. Smartypants should be heading symposiums if he has this secret cure. Don't be yanked around, your husband needs your support and you don't deserve to be belittled; you've got buds here on the site, stay strong and know you have others wishing you and your husband all the best.
by Jeanette57 on Tue Feb 14, 2012 04:28 AM
On Feb 09, 2012 11:20 AM Holly1127 wrote: had his scan it showed left lobe of liver3.1x4.1 cm, right lobe3.5x3.5 cm 1.4x2.03 cm adrenal. plus in left lung, lymph nodes, ileium and still have in colon. The cancer is metastaticized everywhere. He has laid for three days just sleeping all the time. I.m going to take this as bad but not sure how bad. Can you please enlighten me on what this scan has shown? the doctor didnt tell us really anything. i started asking questioned and he seemed he got pissed off and was annoyed by my questions. hope everything is going good for u and your family
On Feb 09, 2012 11:20 AM Holly1127 wrote:
Holly is there any medical universities near you? Take it there and find out what it means. Then make sure the measurements from the machine (mri is tnm or dukes). Find out all you can about liver issues. Sleep is good, Caring4cancer.org is good for foods.
by jcare on Tue Feb 14, 2012 04:59 AM
Hi Holly, the 3.1x 4.1cm and other measurements are the size of the lesions on the liver and or other organs. My husband had a similiar scan in January. My onc gave me a copy after he explained everything to me. Your's should have done the same. This journey we are all on is hard enough. You need to find a new doc who will answer your questions right then and there...with compassion.
by SpringFlowers on Tue Feb 14, 2012 03:55 PM
Yes Holly, as many good caring people here on CC have posted, you deserve courtesy and a full explanation to any and all questions. Just remind the doctor, YOU are the one I (WE) have entrusted for a simple explanation to what is foriegn territory to us. We have no idea what the medical "speak" and jargon indicate. I only had one instance of this happening to me, I kow how humiliating some doctors and staff can make us feel, it is personality, there are many doc's & staff that go out of their way to be helpful and compassionate, but unfortantely, some, no matter how much "education", are still idiotic meglomaniacs trying to impress us with their haughty attitude because they are so impressed with themselves being called "Doctor".....Remember, even the graducate in medical school that passes by the skin of his teeth and comes in last scholastically, still gets to be called Doctor. Just remember, you are just as important and "bright" as anyone who tries to blow you off, the most intelligent are those who ask questions when they don't know the answers. I hate you have been given run-around Usually, this is due to their total lack of character and the ability to connect to another human being. If your doctor is associated w/a group, I would ask for the "head" of the group, take your concerns there. I know it isn't always easy to switch horses in midstream, but if you continue to be treated so cavalierly, you should have talk w/this doc, tell him you are sending letter to medical board and seeking a more professtional oncologist....also, as kindly as you can, express your wishes to him that no one he deeply loves and cares for even find themselves in your circumstances, faced with an uncaring and arrogant physician. Just be kind, you are above those that try to diminish your worth. God Bless and know you are are my prayers and others on site are wishing you & your husband all the best.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.