Posted by Essjay on Dec 16, 2019 8:51 pm
It got me down a bit.
The nub of it is that making it through cancer treatment doesn’t necessarily mean a long and happy life, rather it puts us at greater risk of chronic and life threatening disease than our non-cancer patient peers...
while the study was on breast cancer patients, a large group, making it easy to study, many of the adjuvant treatments are used for other cancers, and so survivors have the same or similar risks as breast cancer patients.
The article flags the need for specialist clinics to follow cancer patients after treatment, since more and more of us are surviving the cancer, and because spotting these conditions early when they can be managed more effectively is not something we should expect family physicians to be expert at.
Posted by ACH2015 on Dec 17, 2019 7:01 am
Thank you for posting this information.
This is the truth that most specialists don't talk to their patients (enough) about. No wonder they don't want us researching for ourselves. One issue I've come up against is the "who's responsibility is it to inform the patient, and when" dilemma. Most times, you will get a glossed over or Cole's notes version of side effects - and that usually does not include the potential long term effects.
Having taken experimental clinical trials in the past, I will tell you that there is nothing left out when you are signing your life away as to the potential side effects including death. Not the same level of info sharing, in general, re current conventional cancer treatments We are truly between a rock and a hard place with cancer treatments. If you've been diagnosed with cancer, you need treatment to control and kill it. No treatment is without side effects both long and short term. Untreated cancer will kill you, and those treatments may have life altering effects. I remember an early discussion during my treatment plan, talking to one of my specialists nurses prior to a consult. We were talking about chemotherapy, and I made a comment about how long it will take me to get back to "normal". She looked at me and said 'you will never be normal again. Some changes will be life long and altering". After the chill stopped running down my back, I felt fortunate to have been given an honest statement about treatment from a medical professional.
I share lots of information here, and many times its regarding the cost and benefit, pros and cons of treatments. We as cancer patients have already been blindsided with cancer, and I believe everyone benefits from understanding their treatment plan, the long and short term side effects, and what ramifications your care will have on your health down the road. Some patients are content being blissfully ignorant, and that works for them. Personally, I prefer to have everything on the table when making decisions about my treatment, and currently my surveillance plan.
For example, I still receive quarterly full body CT scans almost two years after my last active treatment ended. That's a lot of radiation, and for me, the benefit outweighs the risk to me because of my unknown primary. I'm still dealing with the cumulative side effects of chemo, radiation, immunotherapy and multiple surgeries. But I'm alive, and so far that works for me. I accept the trade off I have to live with given all the circumstances I have to balance.
We all have different levels of desire to know about and understand the complete picture and hand we have been dealt re: cancer - and the treatment that follows.
Coming to terms with cancer is just part of the equation. Coming to understand and accept the effects of treatment, your new normal, life altering and next steps in our lives is what follows everyone of us. And I agree when you said: " The article flags the need for specialist clinics to follow cancer patients after treatment, since more and more of us are surviving the cancer, and because spotting these conditions early when they can be managed more effectively is not something we should expect family physicians to be expert at". Putting the onus where it lies, and providing the patient with timely follow ups helps to maintain the balance we need in moving forward.
The important thing, to me, is to put everything into context toward maintaining the balance we need to keep in our lives and move forward with.
Posted by Picasso’s mannequin on Dec 17, 2019 8:46 am
How can we advocate? Petition? Bugging MLA’s Bugging health ministry of provinces?
my specialists barely talked to me, and I feel angry because no one explained my condition, or helped me make good choices, in fact, two of them misinformed me to make bad decisions, and my trust levels are way down. I’m thinking of going for no follow ups and let the odds for my recover just unfold. Now I hope some of the serious side effects diminish, and the treatment effects don’t kill me right away.
Posted by ACH2015 on Dec 17, 2019 8:59 am
Re your question: "How can we advocate? Petition? Bugging MLA’s Bugging health ministry of provinces?"
Answer: All of the above.
First off, we as patients need to understand our situation, including screening and knowledge about how best to manage ourselves down the road. We can't expect or depend on our specific specialists to fill in all the blanks, and I recommend everyone to take some initiative in seeking out the information, getting those important questions answered and piecing together the "how to move forward" for ourselves instructions in as complete a manner as we can.
Being your own advocate and gatherer of information is the best insurance you can have.
Posted by Runner Girl on Dec 17, 2019 9:10 am
I saw this yesterday and immediately printed a few copies to take with me to upcoming doctor appointments. I find it particularly concerning because the only one of my doctors that I truly think had my best interests in mind was my radiation doctor. Unfortunately, when radiation ended my time with him ended as well. I've seen more of my oncologist's replacement than of the man himself. My next appointment with the oncologist is in February, I'll be taking this information with me as well as anything else that comes to light so I can ask the hard questions about what is yet to come for me.
Posted by Picasso’s mannequin on Dec 17, 2019 9:22 am
i read cheery books recommended by cancer center but none of them are clear, what most of us slowly realize about side effects. Eventually genetic medicine will help. But, for example, my chemo requirements were borderline, and the oncologist proceeded to overdose me, not taking into account my sensitivity to medications and tendency to side effects or my very petite skeleton and frame. I was told by Canadian oncologist worst side effects she had ever seen. I offered to be studied genetically, but I guess no one is interested in bad results with only hypothetical benefits, after aggressive surgery.
oncologist told me I needed to have CT scan with dye which I didn’t want, because maybe I had a stroke....um no, I studied neurology. She didn’t have the guts or honesty to tell me the were checking for Mets which I knew very well, but not impressed my oncologistdidnt tell me the obvious. Can’t trust her now. She also convinced me to take more chemo TIL I was in a wheelchair and lost 40 pounds.
The surgery left me unable to do radiation, but I’m glad.
Could have checked also the poor rom in my shoulder and given me pre op exercises and that might have reduced damage to my shoulder.
i am alive with serious problems and now poor results from chemo, unable to complete and surgery, and I don’t want to go through the stress and distrust more. I’m trying to force out a worthwhile life, but it’s only small comfort.
Posted by Essjay on Dec 18, 2019 7:31 am
i am going to print out the research paper as Runner Girl did, and take it to my appointment with my oncologist in January. She’s signing me off to my family doc then - the radiation oncologist has already signed me off.
I’m fortunate in some respects, I am having 6monthly treatment to reduce my chance of bone Mets and to treat osteoporosis at my local cancer centre and I get a clinical exam every time, from a family doc who specializes in treating cancer patients. I have another four years of that treatment. I’m glad I signed on for it given what I’ve read now.
The article flags for me yet again the need for us to self-advocate, to ask what the symptoms are we should be watching for and to seek help for, early, because it’s going to take Canada decades to get its head round treating cancer survivors appropriately.
interestingly, in the USA, patients seem to see their oncologists for far longer than here, for life in many cases. The difference between a state funded model, giving access free at the point of contact in Canada, and a patient/insurance company pays system in USA...
Posted by ACH2015 on Dec 18, 2019 8:38 am
I look forward to hearing back from you with the response from your oncologist re:
1 - what are the potential side effects you should be looking for given your specific case and unique situation,
2 - if and when detected, which medical professional (GP, Oncologist, other specialist) is responsible for recommending testing and follow up care
3 - How will this information be managed given the multiples of medical professionals with their finger in the pie.
Re question #3 - I'd like to share that several times I felt like I had to be the quarterback with the multiple number of different specialists (ten hospitals and 36 specialists) that were needed in my treatment. This reinforced to me the essential importance of keeping all of my individual consults, scans, reports in order to ensure nothing was missed - and believe me sometimes it was.
I've said here on the site that I've continued to suffer fatigue, lack of endurance and cognitive issues. I looked into several specific "potential" reasons for these given my cancer treatments. I discussed this with my surveillance oncologist, and had to convince her to first - include my skull in an upcoming CT scan, and when that was not sufficient to provide the required diagnostic results, , I requested and obtained an MRI of my skull, (brain). Both came back "normal" and did not lead to any identification of my side effects. The bottom line, and important fact here is that my issues were likely a result of cancer treatments. My oncologist is the one that deals with cancer treatments and side effects - not my GP. As I am still under surveillance, I was able to discuss these issues and get the required testing from an oncologist. Both my and every other GP is over burdened with their "regular" clients, and I doubt it would have been as simple to get both a head CT and MRI from the GP. So, this is a good example of who is responsible for what follow up, testing, and then more so when you get signed off by your cancer specialist teams.
We as patients need to self educate during our treatment process. This comes from self study, and researching what we all need to know. This will be different for each of us. Some will get more information than others from their specialists, but networking here and elsewhere can fill in a lot of blanks of knowledge, and searching of reputable sites on the internet. Once this is done and you have been educated, you can start advocating for yourself towards who will do what for you down the road for monitoring those health related side effects none of us had time to be worried about when initially just trying to save our lives during treatments.
I don't think most of us knew or thought that we'd still be so involved in the cancer experience so long after treatments ended. Follow ups and then the collateral damage, and need for the external and distant monitoring that can and do come into play in many cases.
Lots of good conversation in this thread, and I hope we can fill in some of the blanks we all need to know and share as this thread moves forward.
Posted by JustJan on Dec 18, 2019 9:53 am
Posted by Essjay on Dec 18, 2019 9:58 am
Posted by Buffythevampire on Dec 18, 2019 10:07 am
Interesting that the article brought up the heart.
Posted by Ava101 on Dec 19, 2019 6:16 am
Posted by JoannB on Dec 19, 2019 8:38 am
I'm a 3 year survivor of Triple Negative BC, and Metaplastic (not metastatic) as many people have never heard of Metaplastic because of it rarity and aggressiveness.
I read the link to the the article and there is so much truth behind that write-up, thank you so much for posting as I have copied and pasted it to my husbands messenger. You see I'm living with an alcoholic who says he is drinking way more because of my cancer or because I've had a pinched nerve in my back for 6 months, the pain makes him drink more......looking like my fault ladies!!!!
Since treatment I've had an ultrasound of the heart and now I have a cholesterol buildup in my aorta as well as both sides of my neck, my blood pressure is getting more difficult to keep steady as living with an alcoholic is very stressful with all the secrecy surrounding his really s***** habits.
i have been practising meditation, yoga, and have recently joined the YMCA. I don't get much sleep these days as my husband gets up all hours of the night playing on his iPad so I have resorted to sleeping in another bedroom. I'm constantly hounded by "let's eat out, I need poutine" I won't go because it's bad for my heart, no sleep is bad for my heart, stress is bad for my heart!
Finding ways to relax is difficult at the best of times living in this atmosphere.
i was told to take care of myself first, I'm thinking of leaving "for my heart health" but just that thought and the stress involved in a split could make things worse temporarily for me.
i know I'm venting first thing in the morning.....but my point is that we need to take care of ourselves first. If you have not read the article please do so.
Posted by Essjay on Dec 20, 2019 7:31 am
You do indeed need to look after yourself and it sounds like your husband is not helping. He seems to be looking for excuses for his behaviour. You can’t take responsibility for him and he is only going to deal with his alcoholism when he is ready. Only you know if you can stay with him, but maybe you need to have a conversation about his behaviour and it’s impact on you. If he needs help, his doctor might be a good start since there are medications available to deter drinking and a doctor can investigate how bad the damage is that he has done to himself through his illness.
well done on joining the YMCA - they have some great programs, including some for cancer survivors. I’m a great believer in exercise for health, mental and physical, and if your blood pressure is raised I am sure your doctor is encouraging more activity. Take a look at your diet too - cooking from scratch to avoid processed products, minimizing red meat, lots of vegetables. For blood pressure and cholesterol there are some plant products that you can add to your diet that will bring both those down - ground flaxseed, and psyllium are available in bulk and added to breakfast cereal or a glass of orange juice are easy to take. Soluble fibre - pulses, beans all help manage cholesterol.
Yoga sounds like a great way to manage stress - Nameste...Essjay
Posted by Essjay on Jan 6, 2020 7:28 pm
I had the paper with me but I talked through my personal concerns, relating back to the risks she had highlighted when she went through my chemotherapy regimen before I started chemo. I found her pretty dismissive to be honest. Her view was that cancer patients these days get much smaller amounts of the drugs than 10-15 years ago, so the long term effects are much less likely. In my case heart issues are the biggest issue, but she said they would have shown themselves already.
I didn’t find this very reassuring to be honest, but I will have the same discussion with my family doc in due course...
Posted by ACH2015 on Jan 6, 2020 8:02 pm
Thank you for bringing this thread full circle. Until you talk to your GP that is.
Specialists are very good at their profession, but some don't give us much time for Q & A re the aftermath such as you brought up. More so in our monitoring during healing and surveillance against recurrence.
Honestly, I don't think they know, or have time to know about the long term effects until one of their peers writes up the results of a study and shares it with them.
Speaking of which, depending on the drug(s), current, or long term studies may exist or be updated toward potential long term effects noted during the drug's life as a treatment.
Sometimes we are our best advocates and research falls into out laps before - during and after treatment.
Keep us in the loop with the information you get from your family doctor.
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