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Managing your fear of cancer recurrence- Study
11 Replies
Beanie
2 Posts

@Lacey_Moderator how do you stop worrying/wondering about everything that feels or looks different. I’m a month away from next scan and I am so worried my cancer has spread even though I had no evidence in lymph node or elsewhere

DSJ
120 Posts

@Beanie
So true!!! In my case I have one physician telling me the cancer was confined to the prostate bed, another telling me he suspected wide spread micro-mets so put me on two years hormone therapy, while a third doctor thought 6 months ADT would have been sufficient.

A year before I was diagnosed with aggressive, high risk, advanced prostate cancer my GP told me I had nothing to worry about and didn't need a PSA test. Three months after surgery and radiation my leg swelled up and I was initially told it “had nothing to do with my treatment” by the medical teams at “Canada's leading cancer hospital”. I persisted advocating for myself and it was eventually diagnosed as lymphedema, thanks to a GP working in another hospital, and it had everything to do with my treatment.

I sometimes feel that physicians really don't know anything for certain and make things up to make us feel better. My trust in the medical profession is marginal at the best of times as a result. So when they tell me I should be good for at least 10 years I think “oh sure”. How do they know that? If they could provide a good explanation I may be more inclined not to worry about recurrence.

From time to time I meet other men who are on ADT for the rest of their lives and given the side effects of ADT I wonder if I could tolerate the effects again. That is what really scares me about a recurrence - going back on ADT. To your point, how can one avoid those thoughts?

DSJ
120 Posts

@Lacey_Moderator Just a thought, CCS may want to have the Prostate Cancer Support organization distribute this as well since it is directed to women acting as care givers. (Wonder why they don't want men's thoughts on the subject?)

Cynthia Mac
4127 Posts
DSJ‍ I want to tag WestCoastSailor‍ and Roy L.‍ in to try to speak to your post. Westcoastsailer might be able to help you with your question about doctors being off the mark.

My Dad was a prostate cancer survivor for about 18 years, but his doctor recommended he get the test (there was also family history for this cancer). They caught his early, but his numbers started to go up about 5 years after surgery, and he went through radiation for that. He also had a year or so of ADT after.
DSJ
120 Posts

@Cynthia Mac Thanks for your thoughts and considerations. My brother had his PCa caught early and that was over 20 years ago and had no recurrence thanks to an early detection through a PSA test. Despite that family history, my GP refused to do a PSA test when requested. I was subsequently diagnosed with advanced, aggressive, high risk PCa. Regular PSA testing combined with modern imaging devices (e.g. MRI, PSMA PET Scans, Fusion Biopsy) most likely would have detected the cancer much earlier and my treatment would not have to be so aggressive with a high risk of recurrence and reduced quality of life.

Much of that GP's position was influenced by the federal Task Force on Preventative Health, made up mostly by generalists, which recommends against PSA testing using data and research 20 years out of date. I've made previous posts showing recent research that has revealed a growing number of advanced prostate cancer cases in Canada and the US because of guidance NOT to conduct PSA testing. Meanwhile the Canadian Urological Society, made up of specialists in PCa, very much encourages PSA testing. Go figure.

I am on a PCa warriors support group and speak regularly to men who will spend the remaining years of their life on ADT. As you may know, ADT is chemical castration and uses the same drugs previously used to treat sexual offenders until it was determined the side-effects of ADT were deemed cruel and unusual punishment. That's how bad it is!

I am also working with CCS to advocate for regular PSA testing, provincial health care coverage of the PSA testing costs, and provincial coverage of drugs and devices used for reconstruction following PCa treatment - similar to the benefits provided to women recovering from breast cancer treatment.

DHPC75
15 Posts
Hi DSJ‍ Our stories are remarkably similar, including the stage of prostate cancer and the lack of concern by a urologist (in my case) until I was at an aggressive advanced stage. I’ve had the same treatment pathway and two years of ADT. I mainly suffered only from hot flashes, and the CUA Guidelines for ADT, with their extensive list of potential serious bone health, cardio-vascular and other side-effects only came out after I’d done my two years of treatment. I was told very little by my medical team. I’m currently on intermittent ADT and hoping the cancer doesn’t metastasize or become resistant. Different stories from each doc, of course. Nobody wants to give a solid answer or over-promise and under-deliver. When the ADT ended there were times I woke in the night staring into the abyss and couldn’t get back to sleep. I’ve since been practicing living in the present and enjoying each moment as much as possible, and focussing on my breathing when I wake at night and my mind starts wandering into dark places. These forums are a great help, but I always have more questions than answers, and there are too many unknowns. Dave
DSJ
120 Posts

@DHPC75 Yes that does sound familiar. Especially the part about the medical team not saying much. In 18 months and 6 appointments I've seen the Oncologist twice for about a total of 5 minutes.

Just curious, did your PSA remain detectable? Mine has been undetectable since RT 18 months ago. I have two more shots of Eligard to do and I am praying that is the end. They think I should be good for at least 10 years. Just hoping someone will come up with something better than castration before then.

Cynthia Mac
4127 Posts
DSJ‍ Thank you for becoming involved in advocacy. I regularly post on my FB page about the importance of early detection and getting routine screenings, so I’m “doing my bit” on an informal platform, but we also need people like you and WestCoastSailor‍ to get active in the area of lobbying.

I had a strange conversation with my GP on my second last visit about these screening tools only finding cancer after they find it, and I was like, “Yes, but it’s the best we have available and until they can come up with testing to tell us what cancers we’re apt to contract, we have to focus on finding it earlier rather than later.”

My two parents had 5 different bouts of cancer. Dad’s (previously mentioned) prostate was found very early, on a fluke, when mom made him go for a physical before he retired. Mom’s colon cancer was found at the pre-cancerous stage on her first or second colonoscopy. They each had a melanoma. Mom’s was caught earlier than Dad’s, but she needed a second procedure because the surgeon didn’t like the margins. Finally, Dad’s lung cancer was caught at stage 2C or 3A, which the oncologist told us is about as early as they catch it.

So, I’m a HUUUGE advocate for early detection! If my doctor ever wants to put off any of my screening efforts, he’ll be told “This is my body, so I say we do it.”
DHPC75
15 Posts
DSJ‍ I was put on Lupron right after surgery. Lupron ADT lasted for 2 1/2 years. Casodex was combined with the Lupron starting 2 months before radiation, and was discontinued after 10 months. Radiation was about 6 months after surgery. My PSA has been undetectable since January 2021, 6 months after radiation. I began intermittent ADT in May of this year. It was sold to me based on a better quality of life because of fewer side effects when off-treatment, but in the 5 months since I started none of my side effects has diminished. iADT may or may not have any benefit for overall survival rate, so I had an extensive telephone consultation with my urologist/oncologist before I agreed. Otherwise I usually deal with a nurse or intern for my consultations and I ask my questions of them. Presumably they pass everything on to the doc. With the exception of my telephone consult I haven’t seen my onc. in person for 14 months now. I live from PSA test to PSA test. Another one coming up at the end of this month. All the best to you - and keep in touch. Dave
DSJ
120 Posts

@DHPC75 Sounds too familiar. I get the sense not much importance is put on PCa in general and the side-effects of treatment especially ADT. Certainly the research funding is nowhere in proportion to the frequency of the disease. Let's keep in touch.

DSJ
120 Posts

@Cynthia Mac Totally agree. It is the Federal Task Force on Preventative Health that is the root cause of so many problems. They are against PSA testing and they are against mammograms. They are made up of GP's mostly with little or no specialized knowledge and training. They cite research that is grossly out of date to support their position. In discussions with CCS I've learned Dense Breasts Canada has similar concerns about the Task Force.

The best course of action would be to follow the guidelines written by medical experts/specialists. In the case of PCa, it would be the Canadian Association of Urologists. I'm hoping and wishing the CCS will endorse their guidelines as a starting point to initiate positive change.

Let's keep pushing for early detection!!!!

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