Practical issues

Share experiences and advice on practical issues when living with cancer, such as money, work, benefits, transport, food and drink, organising support at home, or getting specialist equipment.

Dad passed from pillar to post after cancer diagnosis. Exhausted.

Felixstowe72
Posted by

Hi there.

My 72-year-old dad has been diagnosed with prostate cancer.  That was in mid-December and he's yet to start treatment. This is mainly due to conflicting information he's now received from 3 different consultants. Each one recommends the below, but they can't seem to agree as there's very little communication between them. Understandably, this is driving my dad crazy as he's very little reassurance, he's confused and he's even said as the process has been so inefficient, confusing and thoughtless, he might not bother with treatment at all. Obviously that would be dreadful but I can appreciate how exhausting and distressing it is. 

  • One consultant has said to him he needs to have his prostate removed (that'd get rid of the cancer and his longer term protratitis)
  • Another consultant recommends a brachytherapy (a type of radiation therapy) which might worsen the existing prostatitis.#

To add to the hassle, his local hospital (Lister in Stevenage) called him in today for a meeting - my dad hoped this would provide him with a final recommendation. Instead the consultant has sent him to a hospital in London to see the other consultant! 

It's becoming absolutely ridiculous. 

Can anyone suggest the best course of action? Is there an organisation we can contact that could somehow 'pull rank' on the consultants to get them to provide my dad with the best course of action. Honestly, it's infuriating that consultants are paid for their senior knowledge and experience, yet they can't provide my dad with a simple recommendation, knowing how stressful a cancer diagnosis is.

My younger brother was treated for testicular cancer last summer/ autumn in Cambridge Addenbrookes, yet the route to treatment was crystal clear as soon as they'd diagnosed him. Sadly, my dad is experiencing the complete opposite.

Thanks

Carolyn28
Posted by

hi

welcome to the online community, sorry you've had to come and find us

how distressing, for him and all of you

hugs

good news on your brother receiving excellent care, I have heard good things about Addenbrookes oncology, I had my eldest son there 30 odd years ago and my youngest was treated for suspected Intussusception nearly 20 years ago. 

I'm not an expert on prostate, I had breast cancer and although the path to my diagnosis was extraordinarily tricky, once the consultants got together they did all agree I'd need a mastectomy and for me, for breast, surgical removal did make sense. We still use 'cut', 'poison' and 'burn' in that order, surgery is by far and away the most effective route to removing cancer and if that's possible it is the way to go. 

However there are a lot of reasons why surgical removal might not be possible or practical.  Age and health of the patient and other related conditions which make surgery, or rather anaesthesia, risky. They will weigh up the pros and cons, or should, and then give you their professional opinion 

and that's not happening 

why so much fence sitting ????

I was treated initially at my local hospital, Bedford, but due to lack of surgeons for breast reconstruction I was referred to the Marsden in Chelsea. It's highly regarded but ridiculously busy. 

What happened was that the team or surgeons, breast consultants, oncologists, radiologist and radiotherapists have a multidisciplinary team meeting, usually once a week, and all the patients are discussed and treatment plans agreed. 

I was discussed in Bedford and then I had to wait to be discussed again in London. 

72 is an 'awkward' age because ... past 70 we might start considering quality over quantity ? My friends father was  diagnosed with lung cancer at 85 and we all agreed that to have offered him any kind of treatment was simply not worth it, chemotherapy is brutal, other therapies are not without side effects. Radio might make things worse, as you said. 

Perhaps if you have a quick chat with the nurses on the helpline, open today until 8pm   0808 808 0000  and seek some reassurances maybe you can act as a calming influence, difficult I know, I can hear you rolling your eyes at me as I type this but someone has to be the one that listens to his frustrations but then says, it's going to be alright, obviously you need to believe that to be convincing ...

I'm going to see if I can find some relevant stats. I only know breast cancer off the top of my head ...  be right back ...

Carolyn

xx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Carolyn28
Posted by

quotes and links to help you be positive and reassuring ...

If lung cancer is like a fast-moving wildfire, prostate cancer is like a slow-moving sloth. About 30% of men over age 50, and about 70% of men over age 70, have at some cancerous cells in their prostate glands. Yet most of them die from something else, and never know about these cells.

https://www.health.harvard.edu/blog/for-some-prostate-cancers-waiting-beats-treatment-201112083935

The research team concluded that the CGA couldn’t be used to predict who was more likely to have side effects from radiotherapy. And that the VES-13 and G8 couldn’t be used to identify people who have additional needs according to their CGA score.

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-prostate-cancer-men-aged-70-years-older-pocamos#undefined

  • Surgery: A prostatectomy—surgery that removes parts of the prostate—is typically a choice in younger, healthy men who want to get rid of the problem while the side effects from surgery are less likely to be risky. There are different types of surgery (open prostatectomy, laparoscopic surgery, perineal prostatectomy) that require incisions on different parts of the body and have varying risk factors, which can also affect someone’s decision. A study found that men who did decide to undergo surgery to remove the part of the affected prostate within a year of being diagnosed didn’t have higher rate of relapsing the longer they waited to decide to undergo this treatment process. So while surgery is an effective treatment, it’s also okay to sit on the decision and make sure that it’s the right treatment for you.
  • Radiation: Treating prostate cancer with radiation is a good option for older men with diminished health whose cancer is progressing. Surgery may be too risky of an option for these older patients, so radiation attacks the cancer without having to surgically invade an older body. Like surgery, there are varying radiation options that require different lengths of treatment, and whichever one is recommended as the best option to you may sway you toward or away from this treatment. For example, one treatment option sees small seeds placed in your prostate that emit radiation over the course of many months to attack the cancer, while another option requires radiation sessions that run 15 to 30 minutes long, four or five days a week.
  • Observation: Sometimes the best treatment is no treatment at all, but rather consistent check-ups and tests to make sure the cancer isn’t progressing faster than usual. The risks of waiting and monitoring can outweigh the risks of other treatments, making observation the best treatment option for the time being. This option makes sense for many men. If an 80-year-old man is diagnosed with a beginning-stage prostate cancer, and it’s not expected to affect the man’s life over the next couple years, why rush treatment? The same can be said for a man in his 50s, who doesn’t feel the need to address the problem until it starts spreading and affecting his health.

https://www.aging.com/prostate-cancer-a-guide-for-aging-men/

Whether you've been diagnosed or have concerns about prostate cancer, we're here to support you. We can also help partners, family members, friends, and health professionals with any questions you may have.

https://prostatecanceruk.org/prostate-information/are-you-at-risk

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Foxy1
Posted by

Hi, Can recommend(though  appreciate that not everybody will have money for a private treatment,) from extensive research on  different treatments for prostate cancer, " Nanoknife" ( not available through NHS, as they have not tested it for prostate( it is used for pancreas,kidney liver), at Princess Grace London or- more  for more experience,at Offenbach, nr Frankfurt ,in Germany.High success rate with no incontinence ,and minimal ED.Very experienced, highly qualified team at " Vitus Prostate" centre for advice.Had treatment  there recently- (Locally Advanced,stage 3a,Gleason8-  4+4. Can  treat all stages.)

 Best regards ,foxyles

Felixstowe72
Posted by

Thank you for your reply - what you say is all very helpful and reassuring. 

Felixstowe72
Posted by

I should add that my dad has had brilliant support from his local Macmillan advisor at hospital. I think he's suffering with anxiety, which is understandable, which I feel is probably making the decision-making process so hard for him.