Discharged from being followed for cancer

Posted by laurie22 @laurie22, Aug 19 12:27pm

Has anyone else been discharged from being followed for anal cancer? I was diagnosed 7 years ago and ended treatment a few months later - chemo and radiation. Most frequently, after my move away from the original team, I had been followed annually by by a new doctor, a colo-rectal oncological surgeon, but was told I never need to see him again last month. This is not a comfortable feeling, because there are several other HPV related cancers and now nobody is checking for them. I also thought my original oncologist said I would be followed annually for the rest of my life, but I could be mistaken. I'm doing pretty well, and see doctors for other health issues, but they are not looking for cancers. I have been turned down for any other oncological consultations by Mayo, so maybe I am just a bit scared for no reason.

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@amyb5

Can you send the doctor a message on MyChart, asking if you won’t be getting annual screening, & explaining your concerns?

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No, he made it clear that I am discharged. But the following reply to another query made me think and I believe I will just trust my annual checkup with my primary physician. Thanks for caring.

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@amyb5

There are two reasons that I’ve heard of (I worked in imaging & was involved with the tumor board, & research). One is that different cancers grow at different rates, many driven by hormones. As we age, our hormone levels decrease, & things typically grow more slowly. This often means that although you have a cancer, it isn’t likely to be the cause of death.
The other reason is again age related, as you know, cancer treatment is extremely hard on our body/organs/blood, and the likelihood of the treatment causing death, outweighs the likelihood of it curing cancer, &/or improving quality of life.

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It is difficult once you have been diagnosed with a cancer.

So wonderful in this case that it’s machines cured.

The unfortunate thing is that HPV is a high risk factor in causing separate new cancers:. The upside though seems to be that HPV cancers are very very slow growing before they become an issue..

It seems in this case, cancer tumours are not showing on screens now so - given our fellow cancer warrior’s age and the slow growth of HOV cancers - - apparently unlikely to be a life or death issue so no screening needed 🤔

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@isadora2021

It is difficult once you have been diagnosed with a cancer.

So wonderful in this case that it’s machines cured.

The unfortunate thing is that HPV is a high risk factor in causing separate new cancers:. The upside though seems to be that HPV cancers are very very slow growing before they become an issue..

It seems in this case, cancer tumours are not showing on screens now so - given our fellow cancer warrior’s age and the slow growth of HOV cancers - - apparently unlikely to be a life or death issue so no screening needed 🤔

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I am so g-d tired of hearing over and over and over again that cancers are slow growing before they become an issue. My slow growing cancer has become an issue and now I am going to die because of those issues while the doctors are off being cautious. Eff them. It is so sad that people live in fear of the possibility of future cancer when I am sitting here with real cancer.

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@mak70

I am so g-d tired of hearing over and over and over again that cancers are slow growing before they become an issue. My slow growing cancer has become an issue and now I am going to die because of those issues while the doctors are off being cautious. Eff them. It is so sad that people live in fear of the possibility of future cancer when I am sitting here with real cancer.

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I’m so sorry to hear that 😰

The reputable hospital sites I read when referring to “slow growing” for HPV related cancers used a timeframe of 15-20 years. With Laurie22 being 79 and being all clear now that seems to have played a role (rightly or wrongly) in their assessment of risk v cost/resources in stopping screening 🥹

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@mak70

I am so g-d tired of hearing over and over and over again that cancers are slow growing before they become an issue. My slow growing cancer has become an issue and now I am going to die because of those issues while the doctors are off being cautious. Eff them. It is so sad that people live in fear of the possibility of future cancer when I am sitting here with real cancer.

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My urologist said that at age 75 there is longer need for prostate cancer screening. Meanwhile my wife's oncologist strongly objected to that notion. He said prostate cancer is a threat at any age and some are very virulent and can be slowed or stopped with early treatment.

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@isadora2021

I’m so sorry to hear that 😰

The reputable hospital sites I read when referring to “slow growing” for HPV related cancers used a timeframe of 15-20 years. With Laurie22 being 79 and being all clear now that seems to have played a role (rightly or wrongly) in their assessment of risk v cost/resources in stopping screening 🥹

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People need to enjoy whatever life they have instead of worrying about what may or may not happen. The point, if there is real cancer detected, a doctor should do something, anything that may be helpful.

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@kenc

My urologist said that at age 75 there is longer need for prostate cancer screening. Meanwhile my wife's oncologist strongly objected to that notion. He said prostate cancer is a threat at any age and some are very virulent and can be slowed or stopped with early treatment.

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Perfect point, you- like me, have the wrong doctor. Some people do not deserve the MD.

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@mak70

People need to enjoy whatever life they have instead of worrying about what may or may not happen. The point, if there is real cancer detected, a doctor should do something, anything that may be helpful.

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This is not the case for those of us with elevated risk due to factors like genetic predisposition or HPV cancer history. Ongoing surveillance is critical for us.

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@msmarcy

This is not the case for those of us with elevated risk due to factors like genetic predisposition or HPV cancer history. Ongoing surveillance is critical for us.

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So it is okay for you to tell me I am wrong?😑

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Hi @laurie22, at the 5 year mark, it is quite common for surveillance and annunal check-ups to be turned over to a primary care physician. With the higher risk of HPV-related cancers, I can understand your concern of no longer being in the care of a cancer specialist. It sounds like you are strong in advocating for continued annual monitoring. Does you PCP agree and support your diligence?

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