Decembeard

Life with bowel cancer

KenC

Not good news

Hello everyone. It has been some time since I posted on here. After about six months off chemo, my latest CT scan was not good. My oncologist, in his ineffably blunt and unempathic manner, said, almost, it seemed, with relish,"Well, Mr C., your CT scan is worse than last time". He then made it clear that he believed there were no realistic treatment options available for me, so, as far as he was concerned, I was now the responsibility of the palliative team. I really wanted to have a sensible discussion with him about the situation, but knew this would just, as usual, end up with him making me feel worse than I already felt. However, I have not given up all hope. I will soon embark on a course of alternative medication, which I hope will be effective. Obviously, at present, I'm feeling a bit dispirited.

xSazx

@KenC Well I'm not surprised your feeling dispirited. Your oncologist doesn't sound very personable at all and you say that 'he' believes there are no more realistic treatment options. His beliefs may differ from someone else's. Well if I was in your position and having read the amazingly positive stories on this forum, I would speak to a different oncologist and make it clear that you are not ready to give up yet. There seem to be many treatment options nowadays and it is important that you have a great oncologist fighting your corner too. I wish you all the best, Sarah :x:

KenC

Thank you, @Sazx, for your prompt and helpful response. I'm certainly not ready to give up yet, so I will keep researching options. One difficulty is that the oncologist concerned is the lead oncologist in my hospital. At no time have I ever felt, over the last two year of treatment, that he was "fighting my corner"! But, I will persevere. Many thanks again , Ken, :x::x:

Lirio345

Hello @KenC, it is so sad when you hear about an unempathetic Oncologist and to be honest I would be seeking a second opinion to put my mind at rest. A lot of people do this and amazingly some find an oncologist with a much more positive approach. Food for thought maybe, take very good care, Kim :x::x:

xSazx

You are most welcome. Don't let the fact that he is the lead oncologist put you off speaking with a different one. He will have no more knowledge than the others and you may find someone with more time to go through everything with you. Funnily enough we never got to meet our lead oncologist because he was always too busy. :x:

bettebette

@KenC I am sorry to hear about your CT and the way you were spoken to, I can only reiterate what everyone has said so far. The inspirational stories on this forum are evidence that there are other alternatives and I agree that a second opinion would be worth seeking, also I would sit and write all the questions that you want an answer to and request a meeting for them to be answered (literally work through the list)
Do you have a named specialist colorectal nurse you could speak to?
Please take the advice of @xSazx
We are all on your side too :x::x:

KenC
Quote from @Liriodendron345:
Hello @KenC, it is so sad when you hear about an unempathetic Oncologist and to be honest I would be seeking a second opinion to put my mind at rest. A lot of people do this and amazingly some find an oncologist with a much more positive approach. Food for thought maybe, take very good care, Kim
Quote from @Liriodendron345:
Hello @KenC, it is so sad when you hear about an unempathetic Oncologist and to be honest I would be seeking a second opinion to put my mind at rest. A lot of people do this and amazingly some find an oncologist with a much more positive approach. Food for thought maybe, take very good care, Kim

Hi, @Liriodendron345. Thank you for your response. I have by no means given up hope, and will continue to research my options. I do intend to start a course of alternative treatment soon. All the best to you, Ken :x::x:

PollyM

I haven't posted for a while. You were so helpful, when we as a family were in despair re our 28 year old son-KRAS mutant bowel cancer. We dismissed the gloomy, "his days are numbered" prognosis from his then dreadful onco. He's now with an oncologist who is willing to explore all avenues to help him! Please do try to find another oncolgist, even if she/he is in the same hospital. I'm convinced that cleaning up the patient's diet etc. is very helpful. Glad to hear that you're going the alternative therapy route. Crossed all digits for you!

KenC
Quote from @bettebette:
@KenC I am sorry to hear about your CT and the way you were spoken to, I can only reiterate what everyone has said so far. The inspirational stories on this forum are evidence that there are other alternatives and I agree that a second opinion would be worth seeking, also I would sit and write all the questions that you want an answer to and request a meeting for them to be answered (literally work through the list)
Do you have a named specialist colorectal nurse you could speak to?
Please take the advice of @xSazx
We are all on your side too

Hi @bettebette . Thank you so much for your message. I'm afraid the care I have had from the medical people, apart from my excellent surgeon, has generally been discouraging and often negative. I do know one person, who did seek a second opinion, and was made to feel increasingly unwelcome in the department. When she finally was allocated a different oncologist, she said, " If I had known then, what I know now, I wouldn't have gone through with this." This, allied to the fact that my oncologist is the lead oncologist, means I have to tread very warily. Thank you for your supportive words. Ken :x::x:

WendySue

@KenC Really sorry to hear about your poor experience. I would definitely seek second opinion at one of the Centres of Excellence in cancer care. It can be your GP and not the Consultant who makes the referral. You are under no obligation to consider the feelings of an oncologist who has clearly not had much concern for your feelings. I have had experience of seeking second opinion and receiving a very immature and obstructive response from my former oncologist- so I changed to someone else able to behave like an adult.
Good luck also with exploring alternative options.
Best Wishes Wendy :x:

KenC

Thank you, @WendySue, for your supportive response. It remains a mystery for me why so many of us have had such a negative experience with our oncologists. I'm so sorry you did have that experience. I will persevere, and soon start my alternative treatment. All the best, Ken :x::x:

KenC
Quote from @PollyM:
I haven't posted for a while. You were so helpful, when we as a family were in despair re our 28 year old son-KRAS mutant bowel cancer. We dismissed the gloomy, "his days are numbered" prognosis from his then dreadful onco. He's now with an oncologist who is willing to explore all avenues to help him! Please do try to find another oncolgist, even if she/he is in the same hospital. I'm convinced that cleaning up the patient's diet etc. is very helpful. Glad to hear that you're going the alternative therapy route. Crossed all digits for you!

Hello, @PollyM. Many thanks for your message. I remember, with sadness, what an awful experience you had with your oncologist. It's good to hear you have been able to find a more positive and open minded one for your son. I will definitely pursue my intention to follow alternative treatment (and thanks so much for your encouragement), while still exploring what other medical options there might be. I hope your son is doing better now. Best wishes, Ken :x::x:

Bear G

Hi @KenC
I’m really sorry to hear the news and the manner it was delivered to you.
Please don’t be despondent about the ‘palliative care’ label, I know there are negative perceptions of this but they do a fab job. I’ve been on palliative treatment for most of the 5 years since I was diagnosed, treating advanced cancers is often similar to treating things like diabetes where they keep things under control to allow you to have a fun and active life.
You can also talk to your new palliative care doctor about potentially getting a second opinion or looking at different treatment options.
Big hugs
Bear
:x::x:

KenC

Thanks, @Bear G . That's both helpful and reassuring. I certainly hope the palliative team have some measure of empathy, which was singularly lacking in the oncology department! The oncologist was not slow to mention hospices. Regards, Ken

GD62

Hello @KenC

Very sorry to read your post and the manner in which news was delivered. @Bear G has given you some good advice too. So good luck...:x:

KenC

Thank you, @GF62, for your care and support. Hope things continue to go well for you. Best wishes, Ken.