Newly diagnosed with ovarian cancer (OC) ~ looking for support

Unfortunately it is even harder to be seen anywhere in Canada where we apparently have a health care system and our tax load is much higher. It is a difficult process regardless where we live.

Both my gran and her sister got ovarian cancer the same month my gran was 63 her sister 58. My gran complained of bloating feeling full and started to bleed they found a tumour the size of a grapefruit and operated she had chemo it went away for 2 years then came back spread to her liver and she died within. A month. Her sister suffered from vsgibal cysts for years had 4 children was morbidly obese she also had a full hysterectomy and chemo recovered and lived until she was 90 remarkably for a lady so obese she was almost housebound her whole adult life and did not eat well she swore by lemon juice in water each morning. My gran loved burnt toast hated veg milk bananas woudl starve herself eating only grapefruit orange potato and weigh watchers soup she didn’t smoke or drink had two kids tried hrt then stopped was always 13 stones 5 ft 4 very unhappy woman the cancer came back and finished her het sister was happy go lucky didn’t smoke but lived in a smoke filled house had 4 kids used to sit home looking after everyone’s kids had no life outside family but she lived til she was 90 neither lost their hair from chemo and both were in remission within a year. I honestly think my grand diet of burnt toast no milk no tomatoes no veg potatoes diet sugar free food 1 calorie soups and one calories spray oil burnt food black pudding grapefruit slimmers white bread potatoes and total aversion to nuts seeds veg bananas milk diary contributed to her diagnosis. She was proudly tea total non smoker popped multivitamin pill and garlic tablets every day did no exercise hated her job and her husband and neither of her kids spoke to her always miserable and in a diet her lifestyle didn’t do her any favours she thought because she didn’t drink or smoke she would be immortal well her second sister who drinks like a fish smokes like a chimney and goes to bingo every Tuesday is still alive aged 94 she hasn’t ailed a thing both her sisters got ovarian cancer and they thought she’d be the one to get cancer but she’s as fit as a fiddle ! I’m worried I’m 44 I’m pre menopausal and missed a smear I’m worried I have the genes so when I find a new gp I’m going to ask to be screened. Please don’t worry once they know it’s there and act fast and tell u to eat kids of liver spinach iron rich foods and give you chemo you’ll recover it’s keeping checked out anc making sure it does not come back that is the problem ok so they’ve found it you’re lucky be positive love each day as well as you can and have no regrets do a bucket list live it up enjoy yourself xxx much love and support

I am in the same boat, with sibling loss, and aching for my parents.
If you want someone to connect with, please feel free to reach out.
Heather

I’d love to hear more about your experiences with the Canadian system. Here in the states we usually hear only two extremes: it’s great because it’s free or it’s horrible because of the wait for many services.
My experiences here: I pay $1,070 per month for insurance. Since my cancer diagnosis, I pay from $800 to $1,000 a month for out of pocket expenses (my share of the services). I have had to scramble to keep my insurance, almost losing it a couple of times since I was diagnosed. Those episodes were extremely scary and stressful! During those times, I wished we had a system like Canada, where they don’t have to worry about how to afford insurance and fear of getting dropped!

Dear lathomasmd:
It is not easy to be in a situation where you have a lot of out of pocket expenses, so I definitely feel for you. Difficult to know where to begin. Good oncology costs a lot of money so it has to come from somewhere. Research and new drug development needs to be funded and skilled personnel retained. Our ‘system’ has seen a steady deterioration in quality and timeliness of service. Diagnostic testing is difficult to access whether you are already diagnosed or are having symptoms that suggests you may be ill. Where I live my GP will send you to the ER, where you can literally wait anywhere from 10 to (recently one person waited 33 hours) just to be seen by a doc in the hope of getting a scan. Otherwise, possibly as long as a 3-month wait for an MRI if you get your GP to just put in a request. In the ER docs tell you go to your GP to get scanned. People are often diagnosed late stage, at which time, the system is more likely to spring into action. Once in the system you are limited in getting a second opinion. First, by then, you have lost time, and second, where I live the docs in a particular oncology specialty are few in number, and work in a ‘team’ approach, so don’t count on an unbiased 2nd opinion.
The drugs and treatment available to you are dictated by a formulary established by government regulation. Therefore, anything new and innovative might be available about 5 to 8 years after they are in the USA or in Europe or not at all. In the latter all you can hope for is to be enrolled in a trial, which again are limited in a socialist system. There are just not enough doctors to train new ones, to do proper research or even understand existing research done elsewhere to keep up with the latest information. For my family member’s condition everyone enrolled with her received the same drug, whether or not they could tolerate it or not. The only woman who was ever taken off the drug, to which many are allergic, had flat-lined during her treatment. All others were drugged up for three days pre and post treatment so they could get through it. Furthermore, they would typically be administered 3 weeks worth of chemo in one sitting rather than come in once a week. This makes it extremely difficult to tolerate and has secondary cardiac impacts, which the oncologists dismiss as relevant. Why is this done? To save on chemo nursing resources. It is a public system after all and you should be grateful for what society is prepared to do for you.
Follow up care post-treatment is also sketchy. No bloodwork! During the pandemic, all that was done was a quick phone call and three or four questions, leaving it to you to know when something is worthy of attention.
Multiply all of this across all medical modalities.
For the healthy folk, be prepared to wait 2 years (yes, years!) for a routine colonoscopy. A friend of mine had to wait 3 years for a new hip and in one community south of where I live, a paramedic who incurred a back injury at work was told he would have to wait 5 years for surgery and then most likely be wheelchair bound. His community collected the $50,000. needed to send him to a clinic in Germany, where he was treated and came to back to work within the following several months.
Please check out our income tax rates. It is not that we don’t pay enough to get the services we desperately need. Many of us have had to go to another country to pay full freight and pay a much higher tax amount than you would in any state of the USA.
This state of affairs did not come upon us all at once, for if it had, we would have been like the proverbial frog dropped in boiling water. There is no one specifically who can be blamed for this and yet we are all complicit in the outcome.
Good care costs money. If you value your life you have to be prepared to invest in it. To do that effectively you need to have choice. That is the key element missing from a wholly public system. Some well meaning person determines what that is for you. If you are fine with that then by all means go the Canadian way. I don’t have an issue with a baseline of care that is available to everyone and having it be cost free. But, we should always be able to access alternatives if we feel that this is in our personal best interest.

Wow! Thank you for the very informative reply! I’ve asked a lot of Canadians about their healthcare experiences, and never had such a detailed response. Maybe because none of them had such a serious, life-threatening condition. I wish you the best.

Hi;
I have been relatively unscathed but a family member went through a lot during the pandemic --hence our first experience with care outside the country. Since then I have come to understood the difference. Many of my countrymen have not had that experience and truly believe that what you would get is the same , but in the USA, you would just have to pay a fortune for the same thing that is free in Canada. Until you have lived both sides, it's difficult to form an educated opinion. If I can generalize a bit, I feel we, north of the border, tend to minimize our issues and are more patient than our friends to the South, so will not complain about waiting and sub-standard care. I don't know when you gathered your information from Canadian contacts, but since the pandemic, services have become dramatically worse. The media have always put an optimistic spin on the merits of our system and in the process demonized yours... but in recent years they, too, have started asking more probing questions and have taken a more critical stance on the shortcomings which I mentioned in my post.
Best wishes and good health.....