Log in or Register to participate in these discussions

Conventional follow up vs holistic follow up

Conventional follow up vs holistic follow up

Posted by KerriKerri on May 11, 2020 7:41 pm

This is one of the few places I can ask this.

I had a lumpectomy, low grade cancer, no surrounding tissue and clear lymph nodes. Surgeon says 'cancer-free'

Oncologists have a slightly different view; the at this moment discussion is the various kinds of conventional treatments as follow up.

I've looked over the monographs for the drugs and such. Not Impressed. I've been looking at journals and questions in here with an eye to helping me decide.

So, it boils down to this.  I'm almost 74, I already have many of the aches and pains that these treatments may cause so presumably they will get worse. There is no guarantee that we have it all; there is no guarantee the treatments will get it all if there is something lurking somewhere. There are no guarantees but there is hope and playing the odds.

Has anyone just said, "Chuck it, I'm not taking it" and played the odds? Gone holistic?

Has anyone seriously thought about foregoing conventional treatment in favour of a holistic approach and then changed their mind and gone conventional?  If so, how do you feel about that decision?

Do you think age would have made a difference? It's one thing if you have young kids but even my granddaughter is 23.  Do I want to be facing 80 with these side effects and still uncertain?

I mean the surgeon looked so convincing when she said "cancer free" She also said that some people my age opt to do no follow up treatment.

Thoughts?  I am all ears.

KerriKerri



 

Re: Conventional follow up vs holistic follow up

Posted by Kuching on May 12, 2020 8:08 am

KerriKerri‍ , I am 71 with stage 4 lung cancer and no kids, so I can relate to your thoughts.  For me, it’s all about quality of life.  I would never opt for chemo or radiation just to stay alive a few months longer, and I told the oncologist that right from the start.   But a few years?  Yes, maybe.  Luckily, I haven’t had to make that decision yet.

At the moment, I’m on targeted therapy, one pill a day, minimal side effects, so I can still lead a normal life.  But I have a neighbour who has had cancer for 13 years, and figures he lost 4 of those years to treatment and recovery from treatment.  Now his remission times are getting shorter, and he’s debating whether it’s worth going through more treatment, just to have a few extra months.  It’s a tough decision.

In your shoes, I would be looking at the difference in survival rates for your kind of cancer with and without follow-up treatment, to see if it’s worth it.  From you post, it sounds like maybe you have already done that.  

Obviously, it’s a personal choice.  Don’t let the doctors make that choice for you!  

Re: Conventional follow up vs holistic follow up

Posted by Essjay on May 12, 2020 8:10 am

KerriKerri‍ I can relate to your dilemma...

I was 49 at diagnosis with aggressive triple negative breast cancer. I understood that I had to throw everything at this cancer to prevent it coming back, and given how long we live in this family (my grandma died last summer age 103), I wanted a good shot at a long and healthy life.

When I went for chemo, I was shocked at how elderly the majority of patients were, and obviously living with other chronic conditions. I shared my shock with a nurse. She told me that they all believe that God wants them to do everything they can to stay alive. This was interesting to me, especially having had a grandmother who was ready to die by the time she was 92. She declined medical treatments after that age telling her doctor ‘she has to die of something’ - she lived another 11 years and was fully active and living in her own home without help for another 9!

Having been through chemo, I feel I’m in this situation again with another cancer after about age 70, I would seriously consider skipping it. It’s tough on the body, and would I really want to take a year out of my life to possibly gain another 5, with unknown quality of life. Chemo has affected me long term. My colon is screwed up, and I have neuropathy in my hands and feet. Both of these affect my daily life. I shared these thoughts with my parents (age 74, and 82) and they told me they felt the same. They would rather live with the disease as well as they could than go through chemo...

I know others will think differently...

Best wishes with your decision Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: Conventional follow up vs holistic follow up

Posted by Cynthia Mac on May 12, 2020 8:22 am

Hi, KerriKerri‍ , my Dad was faced with this decision when he got lung cancer, and again, when the cancer metastasized. Dad was 78 when he had his surgery and we met with the oncologist. Chemo was only going to increase his chance of survival by an additional 5%, but he chose to go for it. His cancer is aggressive, and after the Mets were discovered, the doctor said on more than on occasion that if he hadn’t agreed to treatment, he’d have told him to put his affairs in order.

At the moment, my Dad has had an additional year of life, and his treatment is still working. Yes, he has symptoms, but he is still able to feed the birds, cook and care for himself, and “play” in his garage. As his daughter and caregiver, I brace myself for the day when either his treatments become too much for him or they cease to work. Everything the doctor has said indicates that things will go very quickly after that. 

While this is a case of “your body, your choice,” you might also take a glimpse of this from your off-spring’s perspective, because they will be impacted from your decision too. I’m not suggesting in any way that this be the catalyst for your decision, just that you might want to include their concern as one of the facets of your decision, which you may have done already.

The problem, I’m told, with going down the “holistic highway,” is that there’s rarely a place to take a U-turn. By the time a patient realizes the treatment isn’t working, it’s usually too late to intervene with conventional medicine. I’m going to tag ACH2015‍ Into this conversation, as I know he’s done a lot of research into various types of therapies, and he might be able to shed some light on this for you. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Conventional follow up vs holistic follow up

Posted by KerriKerri on May 12, 2020 9:35 am

This is the kind of input I need; practical, no nonsense, non-judgemental. 

I live alone and any care I receive somewhere along the lie will be outside services. I am not looking at this as treatment per se, rather as a balancing quality of life vs quantity. I have enough on my plate now that I have considered some occasional outside help; this will tip it over the edge. 

It's the quality vs quantity discussion I guess.

Addendum : it appears chemo is not considered so I am looking at radiation and hormones
 

Re: Conventional follow up vs holistic follow up

Posted by Lacey_Moderator on May 12, 2020 10:44 am

KerriKerri‍ 

I'm so glad you posted and found the responses helpful. We support your right to choose what is best for you.

Here is some additional information on Quality of Life that might interest you. I would also suggest you have a detailed conversation with your doctor about your prognosis with and without further treatment so you know you have all the details. 

Another great resource you might find helpful is our Cancer Information Helpline. You can talk things out and get information by calling 1-888-939-3333. You may also want to read more about Radiation to get an understanding of common side effects. Feel free to post another thread asking about radiation and the other medication you will be on to hear from others. 

Keep us posted,

Lacey
 

Re: Conventional follow up vs holistic follow up

Posted by KerriKerri on May 12, 2020 11:30 am

Just had a talk with the radiologist;  a new study just out suggests one week of  radiation is as good as the three so he is looking at the main consultation plus 5 treatments. We had a very good talk; very far reaching; I was very blunt in my usual 'touch of humour' way, he fielded it well and was reasonable to talk to. 

We will talk again when the other results come ack.  He also brought forth the idea of genetic testing; an interesting thought.

I am marginally more receptive to radiation. Marginally.

Off to see what people have to say about radiation.
 

Re: Conventional follow up vs holistic follow up

Posted by ashcon on May 12, 2020 12:24 pm

Hi KerriKerri‍ 
By the sounds of it, you are getting practical, no non-sense, non-judgemental input from folks here, and from your doctors because that's what you yourself put out!

About radiation, I learned it is an art & a science unto itself and those in the field are typically very proud and committed to what they do.  This article Radiation: Audit Until They've Got It comes from a man I much admire, Dr David Palma, a Canadian Radiation Oncologist out of London Health Sciences. 

Don't forget, if you do choose to go with any sort of treatment, you are not on any contract! You can change your mind, back out at any time.  My doctors told me I can change my mind even while sitting there in the little blue hospital gown!

Wishing you health, happiness, and harmony.
 
---- "Nothing ever becomes real till it is experienced." ----

Re: Conventional follow up vs holistic follow up

Posted by Cruella on May 12, 2020 3:50 pm

I am kind of in the same boat. I had a mastectomy 4 weeks ago and the surgeon told me it is stage 0 with no chemo or radiation needed. She is having an oncologist call me at the end of the month to discuss oral preventative medication. I have heard you have to take them for 5-10 years. I am 62 years old and am in pretty good health and I'm not sure I want to take anything.

Re: Conventional follow up vs holistic follow up

Posted by KerriKerri on May 12, 2020 6:10 pm

Yeah, 5 years for anastrozole, longer for some of the others.  Many people have no side effects or minimal. but some have many. The reason that the side effects list is so long is that someone had 'em. Take the 'throw you back into menopause' affect. Menopausal me was bad enough at 39-54, But 74 year old menopausal me doesn't bear thinking about. 

Somewhere in the monographs I looked at, cataracts was a possible side effect. Well, I'm safe from that one, I had cataract surgery last year. No fear. But our Director of Nursing went legally blind as a side effect from treatment and there was only a miniscule risk of that happening.

But it's the preventative aspect that really concerns me. There is no guarantee that it won't return in some other guise. It might be worth it all if they could promise, but they can't. So, perhaps just roll the dice?

*sigh*
 

Re: Conventional follow up vs holistic follow up

Posted by tennisguy on May 13, 2020 11:34 am

Folks and KerriKerri‍ ....Don't post often here, but this topic caught my attention.    I am part of a small group of Canadians (we actually meet up virtually on a semi regular basis) that share one common belief....that their is a strong possibly that cancer can also be treated as a metabolic disease.     The group is made up of various cancers in various stages and our discussions revolve around using standard of care treatments, off label drugs, and natural supplements.      The concept of treating cancer as a metabolic disease has been looked at for years, however, it has only really started to make some headway in the last few years (IMO).    There are numerous research papers that have looked a various off label drugs and supplements as adjuncts to cancer treatment (e.g. try googling 'aspirin cancer treatment').   This is not to say that aspirin will cure cancer....that is simply not true.   However, what is being more closely being studied as the synergies between various compounds.     Our group also has one other thing in common.    We have all read a book called 'How to Starve Cancer' by Jane Mclleland.    Jane, after being diagnosed with Stage IV Overian cancer in mid 90's, and then a blood cancer in the early 2000's (as a result of the chemo/radiation) she received, used some of her medical training to deduce a methodology for her cancer treatment using a combination of off labels, supplements and standard care treatments.    She remains cancer free today and is dedicated to helping other cancer patients with this approach.     Her book is her story, but also a framework on the metabolic processes which drive cancer and approaches on how to down regulate these processes.

Sorry for the long post, but I thought it was a good opportunity to present some information that may not have been previously considered.

Re: Conventional follow up vs holistic follow up

Posted by KerriKerri on May 13, 2020 12:07 pm

Thank you Tennisguy for that. Yeah, I'm not looking for the holistic approach to 'cure' whatever might be left, more at making my body more able to withstand the onslaught of further cancer if it is lurking elsewhere.

The lump was there for years I think, it was just suddenly there and I was traveling the world and I made the choice to keep traveling. It didn't change, it didn't hurt, it didn't move, it didn't do anything. Lo-o-ong story. 

The brother of a friend is using chrisbeatcancer Chris Wark as a guideline. Note I say guideline. While Chris may feel that he has the answer, I am inclined to agree with one of his very qualified debunkers that the surgery cured him, his lifestyle has helped sustain the cure and frankly, time will tell the tale.

Another friend of a friend has gone with my friends native/holistic/vitamin type regimen after having the exact same diagnosis and result as me. She is 3 years past surgery.

As I look over many of the holistic approaches, I do not have to change a whole lot of my diet; but I do have to turn away from my vices like butter tarts, pop and chips and what I would call 'culturally specific treats'. You know, the kind you find in specialty bake shops. *eye roll* So hard to resist! But it may be that the lump didn't change because I was already  eating many of the 'right' things. When I was traveling,(after I retired)  it was mostly Hostels and backpack, so my diet was pretty "pure', not too many sweets. 

As soon as someone comes in with an evangelical certainty that they have the 'answer', they've lost me. No one has all the answers. but I am looking for considered opinions. 


 

Re: Conventional follow up vs holistic follow up

Posted by Essjay on May 14, 2020 8:04 am

KerriKerri‍ I hear you on wanting to make lifestyles changes to prevent the cancer coming back. I’m just the same. I felt it’s worth giving my lifestyle a good shake to reduce my chances. For me that’s managing my diet eating healthily - I don’t eat meat, eat plenty of fruit and veg, oily fish, not too many carbs. And I exercise daily. I do yoga daily (for my mental health and flexibility), I take a walk outside daily (often with my dog), I do weight training for my bones and to maintain muscle mass and fitness for running. The running I started after I finished treatment, specifically so I could run in the ‘Run for the Cure’, hosted by Canadian Cancer Society. Last fall I raised $1500 for the cure, having not run for 35 years...I haven’t stopped and truly believe I am running for my life. I also work hard to manage stress and deal with my anxiety (which I’ve lived with all my life). If the cancer comes back, I want to feel I did all I could and it’s bad luck and not feel guilty or to blame (irrational as that may be)...
Triple Negative Breast Cancer survivor since July 2018

Re: Conventional follow up vs holistic follow up

Posted by Lacey_Moderator on May 14, 2020 9:49 am

KerriKerri‍ 

I appreciate the open and non-judgmental sharing in this thread. I respect a person's right to choose or not choose conventional treatment and I believe people deserve a safe place to discuss. I also think research and credible information is important. Acknowledging that people have their own opinions about credibility.

For those who are interested I wanted to share some info from cancer.ca:

Making Treatment Decisions
What about alternative treatments?
Questions to ask about complementary and alternative treatments
The risks of alternative treatments
Prognosis and Survival

Thanks for sharing openly your own personal experiences without giving advice or telling people what they "should" do.

Lacey