INTRODUCTION

[DAVID D]

Hi.     Obviously I am new here.   Almost five months ago my wife was diagnosed with lung cancer.   Surgery is scheduled for this month. We have been so confused and always wondering if we are making the right decisions.   I'm hoping to find some folks here that will share experience and knowledge.

I'm sure most will agree that the whole system seems crazy.

[LexieCat]

Hi, David, and welcome.

Can you tell us a bit more about your wife's diagnosis and the treatment she's had so far?  What type/stage of cancer?

Glad you found us--there's some great information and support on this forum.

[DAVID D]

Thank you for the welcome.

Diagnosed in August with NSCLC Squamous cell Stage 2A 

The only treatment so far has been high doses of Simpson Oil. Surgery is scheduled for this month but I can not understand how this type of tumor has not changed in nearly five months. Does anyone know what the likelihood is of a 4 cm squamous cell tumor not growing at all in 140 days?

[BridgetO]

Hi David. I can't answer your question about lack of tumor growth. Do you know why surgery was postponed for 5 months?  I hope that your wife hasn't been relying in the Rick Simpson oil for treatment instead of conventiional medical treatment. I'm not at all opposed to complementary remedies so long as they're really a complement to conventioal treatment. I know that there hasn't been much  opportunity for testing of cannabis based treatment due to government regulatio. I do hope that changes, but in the meantime, I think relying on cannabis alone is not a good idea. I also hope that you and your wife aren't making your own Rick Simpson Oil because the solvents used carry a risk of fire/explosion. 

That being said, welcome here and let us know how we can support you. Also, if you and your wife are confused and unclear about her treatment, there's the option of a second opinion.

Bridget O

[DAVID D]

Thank you for the welcome.

The Rick Simpson Oil was not intended to be in lieu of conventional treatment but more as a, "why not, what is there to lose" type of thing.    When I had first heard of the oil and began to research it I was surprised at the amount of anecdotal evidence there is that suggests it may have some real value. If nothing else it has certainly helped my wife cope with the stress of being diagnosed with lung cancer.

We have experienced a great deal of confusion and frustration as a result of various doctors disagreeing with treatment options as well as poor communication between doctors and their own staff.  Things like phone calls not being returned as promised,  unnecessary redundant testing, and other things. The  delay in surgery is because her surgeon had said that her  Pulmonary Function Testing  indicated that she was not a candidate.  The pulmonologist made it clear that he disagreed with the surgeons findings and we have since consulted with a different surgeon.

Interesting note regarding the manufacture of the RSO - No I do not manufacture it but I am aware of the danger. Two or three weeks ago there was a local tv news story about a house several miles from me which "exploded". After an investigation it turned out that the people who lived there were manufacturing different .cannabis oil products!  I don't think anyone was hurt but it scared the hell out of the neighborhood.

I'm still trying to understand how such an aggressive tumor would just stop growing??

[LexieCat]

Every cancer is different.  And mutations can happen at any time.  So we may never know why hers has stopped growing, but it seems like that would be a good thing.  

I am a bit surprised that, if the doctors initially thought she could not tolerate surgery, she was not started on chemo and radiation.  Those can be extremely effective.

[DAVID D]

There has been a great deal of confusion from the beginning.   You are not the only one who is surprised. The oncologist and pulmonologist were also surprised that the surgeon felt that surgery was not the best option.  As a lay person I was completely stunned by the disagreement between doctors and began trying to learn as much as I can in the short time that I have. 

I also feel that the stoppage of growth is a good thing but it adds to the confusion. As of yet I have been unable to get any explanation as to how or why the cancer would just stop growing.  Obviously the question has become somewhat of a moot point as the growth could become active again and needs to come out.  Doctors in general are reluctant to say, "I DONT KNOW".   This reluctance seems to only add to the confusion. When I find a Dr contradicting himself or giving vague  answers to specific questions I instinctively begin to lose confidence thus adding yet another element of confusion or frustration.

Our experiences so far have led us to the point where we feel as though we have to interrogate every new dr who enters the picture.  

 

 

 

 

 

[LexieCat]

Actually, I'd lose confidence in a doctor who insisted s/he KNEW what was best/would work in every situation.  No medical professional has a crystal ball.  Much still is not understood about cancer in general, and even the most comprehensive tests provide only part of the picture.  Medicine is both a science and an art, and sometimes even the most educated and experienced doctors will disagree. That's why you get all those informed consent forms, acknowledging that various treatments may have side effects or bad outcomes.

I'm less surprised by someone recommending against surgery (sometimes the benefit does not outweigh the risk) than I am that other oncological treatment (chemo/radiation) was not started.  Was it offered and refused?

[DAVID D]

There has been no offer or refusal of Chemo/radiation.   Testing found no evidence of cells anywhere but at the growth.  All agreed (including the surgeon) that surgery was the best option and that any other treatment options would be decided post surgery.  

[Tom Galli]

David,

Your primary question is why tumors stop growing.  The answer is remission.  Remission means cancer stops growing without medical treatment.  Sometimes this happens; in a small number of people, remission may continue for a very long time.  I know several lung cancer survivors who've benefited from remission.  One entered hospice with extensive lung cancer tumors.  All treatment stopped but so did his cancer progression.  He was finally discharged from hospice after two years because hospice care is normally limited to six months. He passed a couple of years ago with a heart attack but had extensive tumor burden without growth, progression or treatment. So cancer stops growing sometimes, rarely and unusually.

Your diagnosis process and treatment team discord are very unusual.  A stage 2A NSCLC single tumor should present little cause for medical disagreement. Most are successfully treated with surgery and follow-up chemotherapy. Another common option is precision radiation (SBRT, IMRT or IGRT) that can be use in place of surgery. I can't fathom why the delay unless you are attempting to address with non-science based methods.  In that case, I would advise extreme caution.  Science based methods have a singular advantage over non-science based: results are repeatable. That is, the science based method produces the same results in a large number of people. When I think about people who employ non-science based methods, I think about Steve Jobs.  When is cancer was identified, surgery would have "cured" it.  Instead, he flew to India to explore non-science based methods. Read his biography on his admitted poor judgement.

I hope the best result for your wife.

Stay the course.

Tom

[DAVID D]

Thank you Tom Galli for your response.   Rather than ask what causes a tumor to stop growing,   perhaps I should rephrase my question and ask "what causes remission?" . I appreciate your attempt at answering my question although your statement "that the answer is remission" doesn't help a lot.  I will use the term remission instead of growth stoppage.   

The delay in surgery had nothing to do with the use of high dose cannabis oil however the delay in surgery is what led us to discover that the cancer had gone into remission.  The delay was caused by incompetence on the part of the surgeon and or his staff.    A date for surgery was set almost immediately after the initial diagnosis in August.  In addition to other mistakes the surgeon did not review test results until a week prior to the date of surgery.  Upon review of, and as a result of the Pulmonary Function Test results, the surgeon decided that he was unable to perform surgery.  At that point we went back to the oncologist who was quite surprised at the surgeons decision. A subsequent visit to the pulmonologist found that he was not only surprised but was also quite certain that the surgeon had misinterpreted the PFT results.   A repeat of the PFT proved that the results were such that should make surgery a viable option.  After consulting with a different surgeon it was decided that surgery would be the best treatment.  Tomorrow we are meeting with a different oncologist in order to have everyone in agreement.  Incidentally the oncologist is one of the most renowned in the state and I am looking forward to meeting him. 

The sequence of events that I described took place over a period of many weeks. . This is a squamous cell cancer which typically doubles in size every 230 days. Because of the delay and the repeated testing I now know that the tumor has not changed in a period of nearly five months and I want to know why.  There is a great deal of anecdotal evidence which suggests that high doses of THC can cause certain cancers to go into "remission".  Cured?  

 

 

[Robert Macaulay]

David D

When we talk about cancer, we're talking about over 200 different diseases - so it's not one cure, but many that are needed to beat the disease.

This is intresting reading

https://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/?_ga=2.237861254.785160890.1546788741-1349093408.1545877032

 

Bob

[DAVID D]

Thank you for passing that on Bob.   I've seen the same article before and found it well done however its quite outdated. It was published in 2012 which by today's standards is almost ancient!

Your point about cancer being a term used to describe hundreds of different conditions is well taken although there is at least one commonality which I believe all cancers share -  accelerated cell reproduction.  In the case of my wife, the cancer is quite specific. NSCLC squamous cell.    

Six moths ago I only knew one thing about lung cancer - Pray that you don't get it.  Since her diagnosis I have learned a great deal. The most interesting thing that I have learned is that the medical community doesn't know much more than anyone else. 

 

[Robert Macaulay]

8 minutes ago, DAVID D said:

Thank you for passing that on Bob.   I've seen the same article before and found it well done however its quite outdated. It was published in 2012 which by today's standards is almost ancient!

Your point about cancer being a term used to describe hundreds of different conditions is well taken although there is at least one commonality which I believe all cancers share -  accelerated cell reproduction.  In the case of my wife, the cancer is quite specific. NSCLC squamous cell.    

Six moths ago I only knew one thing about lung cancer - Pray that you don't get it.  Since her diagnosis I have learned a great deal. The most interesting thing that I have learned is that the medical community doesn't know much more than anyone else. 

 

David D

At this  time i am being treated for  NSCLC squamous cell which is my second cancer the first was fifteen years ago and  not related to my present cancer.

Bob

[DAVID D]

Bob,  I am very interested in learning the details of your cancer.  I am leaving the house for the day but would be grateful if you could take a few minutes to tell me about you and your cancer.

If you have already posted this information please tell me where to find it. I did a quick look but could find no way of looking at your past postings.

As I said I am leaving for the day but will look again this evening.

Regards

[Robert Macaulay]

David D

All my posts are availible to read just checked. click on my name then posts.

Bob

[DAVID D]

Bob,    I went through your past postings and must say that I am inspired by your calm demeanor.  I've been on pins and needles since first learning of my wife's cancer and have a hard time imagining how I will get through another six months of this.

It is obvious that you have been a great source of calm for a number of people,  your patience has already calmed ME down. 

I'm sure Robert Diniro would feel the same 😉

[BridgetO]

Yeah, Bob is not only calm, he has a great sense of humor.😄