Cancer: It Is Not All The Same

[azstonie]

http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande

Hi Fellow Hanger's Out:

I didn't want to threadjack in MayKs thread about her journey, a success by anyone's measure, but I did want to post this article, which I find to be an outstanding characterization of cancer, diagnoses, and treatment planning.

Some posters on that thread posed questions or observations and I wanted to respond but not in that thread.

In short, not all cancers behave the same way.

When I worked at the august healthcare institution I just retired from, I saw women in their 80s come in for a physical exam who had large tumors in their breasts and had them for many decades. They were otherwise in outstanding health and would go on to die of other problems like a stroke or heart attack. This type of breast cancer is indolent cancer, slow growing, no metastases, and not the cause of mortality. Clearly, these were women who weren't having mammograms. They did not die of breast cancer.

I saw patients with cancers that early detection mattered a great deal in terms of quality of life AND mortality: Colon cancer and melanoma are prime examples. Absolutely, get screened and get on it if you come up positive on screening/diagnosis.

Sadly, there are cancers where early detection makes no difference in terms of mortality.

For sure, what I also learned in healthcare was this: Make sure your *data* is good before you even consider diagnosis and treatment planning. Data=lab tests, imaging, pathology, and clinical exam. This is what will determine your outcome. Mistakes are made. Some results are open to interpretation and you want the most experienced interpreter reading your imaging/slide/bloc. You want an oncologist who specializes in your problem. Go to a Center of Excellence for your particular issue. Example: Ovarian cancer, gold standard is now IP chemo, meaning intraperitoneal chemotherapy. Adds a lot of time on to lifespan and without destroying the health of the patient. Only 16 centers in the US are doing IP chemo for patients with ovarian cancer. WTH.

Keep a binder in which you keep a copy of your blood tests and physician visits and this is most important: GET YOUR IMAGING RESULTS AND THAT MEANS BOTH THE RADIOLOGIST'S REPORT *AND* THE ACTUAL IMAGES EITHER AS AN ATTACHMENT OR A DISC. For pathology (biopsies), have your slides sent along with the pathology report for second opinion.

Institutions are going to lose your test results and images and slides or the staff isn't going to rush them for you. If you already have them in your possession, your next provider can get working for you right away.

 

[canuk-gal]

http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande

Hi Fellow Hanger's Out:

I didn't want to threadjack in MayKs thread about her journey, a success by anyone's measure, but I did want to post this article, which I find to be an outstanding characterization of cancer, diagnoses, and treatment planning.

Some posters on that thread posed questions or observations and I wanted to respond but not in that thread.

In short, not all cancers behave the same way.

When I worked at the august healthcare institution I just retired from, I saw women in their 80s come in for a physical exam who had large tumors in their breasts and had them for many decades. They were otherwise in outstanding health and would go on to die of other problems like a stroke or heart attack. This type of breast cancer is indolent cancer, slow growing, no metastases, and not the cause of mortality. Clearly, these were women who weren't having mammograms. They did not die of breast cancer.

I saw patients with cancers that early detection mattered a great deal in terms of quality of life AND mortality: Colon cancer and melanoma are prime examples. Absolutely, get screened and get on it if you come up positive on screening/diagnosis.

Sadly, there are cancers where early detection makes no difference in terms of mortality.

For sure, what I also learned in healthcare was this: Make sure your *data* is good before you even consider diagnosis and treatment planning. Data=lab tests, imaging, pathology, and clinical exam. This is what will determine your outcome. Mistakes are made. Some results are open to interpretation and you want the most experienced interpreter reading your imaging/slide/bloc. You want an oncologist who specializes in your problem. Go to a Center of Excellence for your particular issue. Example: Ovarian cancer, gold standard is now IP chemo, meaning intraperitoneal chemotherapy. Adds a lot of time on to lifespan and without destroying the health of the patient. Only 16 centers in the US are doing IP chemo for patients with ovarian cancer. WTH.

Keep a binder in which you keep a copy of your blood tests and physician visits and this is most important: GET YOUR IMAGING RESULTS AND THAT MEANS BOTH THE RADIOLOGIST'S REPORT *AND* THE ACTUAL IMAGES EITHER AS AN ATTACHMENT OR A DISC. For pathology (biopsies), have your slides sent along with the pathology report for second opinion.

Institutions are going to lose your test results and images and slides or the staff isn't going to rush them for you. If you already have them in your possession, your next provider can get working for you right away.

HI Azs:

Thanks. I didn't know you were an MD/Oncologist. Is there a link to your Institutions Standard of Care? I am not a MD, but work in health care and am always interested in evidence based practice. Thanks for sharing.

cheers--Sharon

 

[azstonie]

Cheers to you, too, Sharon! Always good when you post!

 

[OoohShiny]

Thanks for offering your insight


re: getting copies of your scans etc, I don't believe that patients are allowed copies of their notes and/or scan results in the UK? Something to do with Data Protection Act and all that?

I know that when a young relative of mine I was looking after nearly broke his arm (oops ) we weren't allowed to get a copy of the X-Ray to show his parents.

 

[Mayk]

I'm so glad you started this thread. One of the things that helped me move through the process quickly is my birth mother was diagnosed this past spring with Multiple Meyloma. High stage 2, M Marker tests at 5.0 (zero is what it should be). She actually changed doctors after several months. Found two specialists in Seattle and as of the Wednesday before my surgery 7 months past her diagnosis she is in Remission. Granted this is not a cure as this Cancer doesn't go away (as you know) it comes back stronger each time it returns.

But what you said is so true, have your records, check your facts, don't be afraid to be your own advocate and reach out to understand the resources available and use them. My mother also has a healthcare advocate that goes to all her appointments. He's a retired doctor who volunteers his time at her church. He takes notes and helps her disecct the appointments and the direction she wants to take. He's been a huge help to our family. As a patient it is very hard to follow all the Information provided on appointments and remember to ask questions.

 

[chemgirl]

Thanks for offering your insight


re: getting copies of your scans etc, I don't believe that patients are allowed copies of their notes and/or scan results in the UK? Something to do with Data Protection Act and all that?

I know that when a young relative of mine I was looking after nearly broke his arm (oops ) we weren't allowed to get a copy of the X-Ray to show his parents.

Maybe it depends on who is asking or who you ask? In Canada you usually have to make a request with the records department of the hospital and it takes a few days for approvals. I did need copies of ultrasound images immediately once and they had them for me in half an hour , but did tell me it wasn't standard procedure.

I asked for DH oncesince he was a little out of it and they said he would have to make a formal request whenever he was able.

So at least in Canada you can get your images.

 

[smitcompton]

Hi Astonie,

I actually am going thru this type of dilemma. I have had all sorts of tests and it has been found I have a tumor near the bile duct in the upper stomach near the pancreas. My GP referred me to a Gasto Dr., who, after tests referred me to a surgeon, who told me I would die if the tumor is not removed, but he doesn't have the skills to do it. He tried, but found an artery is going thru the tumor. He has referred me to the Mayo Clinic to see if Dr.s there are able to do it.

I was very upset this week as no one has given me any other alternative. When I asked the surgeons office they said the Mayo Clinic Dr will tell me. All my tests are being forwarded to the Mayo. I am an old woman who has gone thru other cancer treatments and has other medical problems. I figure I if the Dr. decides he can do it, I will probably die on the table or have a difficult recovery. There is no one who wants to tell me how long I have if I don't do the surgery, or more importantly , to me, is how much pain will I be in. What kind of Drs do we have?

I have a call In to my GP, who gave me these referrals, but even his nurse said to me, "You know hes not an oncologist. "Yes, Of course I know.

This surgeon only spoke to me during the initial consultation. He told my son and a friend that he could not save me, but neglected me, even when I call his office, they don't call me back.

I need someone to give me more options.

Annette

 

[JDDN]

Hi Astonie,

I actually am going thru this type of dilemma. I have had all sorts of tests and it has been found I have a tumor near the bile duct in the upper stomach near the pancreas. My GP referred me to a Gasto Dr., who, after tests referred me to a surgeon, who told me I would die if the tumor is not removed, but he doesn't have the skills to do it. He tried, but found an artery is going thru the tumor. He has referred me to the Mayo Clinic to see if Dr.s there are able to do it.

I was very upset this week as no one has given me any other alternative. When I asked the surgeons office they said the Mayo Clinic Dr will tell me. All my tests are being forwarded to the Mayo. I am an old woman who has gone thru other cancer treatments and has other medical problems. I figure I if the Dr. decides he can do it, I will probably die on the table or have a difficult recovery. There is no one who wants to tell me how long I have if I don't do the surgery, or more importantly , to me, is how much pain will I be in. What kind of Drs do we have?

I have a call In to my GP, who gave me these referrals, but even his nurse said to me, "You know hes not an oncologist. "Yes, Of course I know.

This surgeon only spoke to me during the initial consultation. He told my son and a friend that he could not save me, but neglected me, even when I call his office, they don't call me back.

I need someone to give me more options.

Annette

Hi Annette,

I'm so sorry you are going through this. Nothing is worse than when you aren't being communicated with. I'm not sure where you live, but something like this may be an option for you. I would call the program yourself (not leave it up to your GP) and see if you can have your case submitted. I think what Azstonie was talking about (having all your records in your personal possession) is a prime example for doing something like this.

This is just one, but I think all the major teaching university/hospitals do this.

http://surgicaloncology.surgery.ucsf.edu/patient-center/tumor-board-conference.aspx

 

[Mayk]

Smitcompton my heart is breaking for you. We put so much trust in our providers. Keeping you in my thoughts and prayers.

 

[minousbijoux]

Smitcompton: I too am so sad to hear of your troubles. It is bad enough to be sick; it is even worse when the medical professionals are not helping you to identify alternatives and determine a clear course of action. The communication of information to your son and not you is just inexcusable; as if you do not exist.

 

[smitcompton]

Hi,

Thanks JDDN for the info. I have started the process of gathering my medical records. Its funny how each aspect of the medical areas have different requirements for securing the records,. The cat scan CD's were the easiest ones to get. The others will take 10 days. I just got a new computer and can't work the printer yet, so I can't download myself.

Thanks Myak, and Mineau for your good wishes.

Annette

 

[missy]

Annette, I am so sorry. I am keeping you in my thoughts and prayers and sending good wishes your way. I hope all your doctors can work together and get you the help you need. (((Hugs))) and healing vibes being sent your way.

 

[smitcompton]

Hi,

Just want to let you all know that I secured an appointment with a team of oncologists for next week. The nurse made me feel better because she was very surprised that these Drs had left me without an oncologist. I didn't need a referral. But, this team of oncologists belong to the same group as the three Drs I have already seen. It appears they are unaware of the rest of the group.
Its hardly believable And the oncologist is in the same place as the surgeon.

I am relieved. I thought I was just thrown out there to fend for myself, which I guess I did, only to find the resources at the same place.
Thanks again. Missy, you are always so nice to everyone. Thank you.


Annette

 

[Calliecake]

Annette, I am so sorry you are going thru all of this. It's frustrating enough to have to deal with being sick. It would seem the doctors assistants would be able to help you see other doctors that can help you. I know you are in the Chicagoland area. Have you tried doctors at Northwestern or University of Chicago?

 

[smitcompton]

Hi Callie,

My other cancer treatments were at Rush Pres., and I know I could have called my Chemotherapist from Rush as we did get friendly, and I used her before for another couple of emergencies and I was hesitant to do it again as I think it ought to be the gastro Dr.s who would do so.

I have other problems that make it too difficult to go to those mentioned hospitals, or Rush either for that matter. I am confined to a wheelchair with a spinel cord injury and much peripheral neuropathy throughout my body. I have had three surgeries on my lungs so breathing is also constrained but no oxygen. So I hope you can see why I need treatments near home. Also why I am doubtful I would survive a 5 hr surgery. When I just had an endoscopy by the surgeon, his warnings on the dangers of doing that procedure were so dire, I got all my finances in order and kept giving directions to everyone, just in case. So I need alterntives to the surgery.

I live near Central DuPage Hospital, which is now part of Northwestern, but is really not the same.

My terminal cancer was over 26 yrs ago, and my spinel injury was 16 years ago. I did get almost 30 yrs more than thought. I was hoping I would make 80.

Living in America I have had a good life. Both ups and downs. I have seen so many changes, so many for the good. I shall never be ready to die, but it comes to all of us. I have even looked up the 5 states that have Dr assisted suicide and my son has agreed to take me to one of them when it becomes necessary. In the meantime I'll check in to see nice jewelry, and some nice people.

Thanks,

Annette

 

[Tekate]

I am always hopeful Smithcompton that things can get better. My SIL is a cardiologist and works with UVA medical school and when I was given some perhaps bad news 15 years ago she said: - Tekate, take your pictures and walk, walk to as many oncologists, urologists, radiologists that you can, then decide what you will do.. It was sage advice.

I send you healing thoughts.. and caring.

much love and peace to you and yours.

 

[Calliecake]

Annette, Your post broke my heart. I'm hoping these new doctors will be able to help you. Please don't give up hope. If you feel like you have hit wall, post and tell us. I will be happy to help you research doctors and treatments. My thoughts and prayers are with you.

 

[smitcompton]

Hi,

Thanks Tekate for the advise. I totally agree with you, which is why I was so upset when they gave me no alternatives. I'll see what this new fellow has to say. Next week.

Thanks to you Callie for offering to help. Right now, I like distractions from my concerns, which is why I rarely respond to the ills that I read about on here. So, I don't expect or want more comments at this time. Lets go eat cake.


Annette

 

[rainwood]

Annette -

I went to many, many oncology appointments with my husband, and one of the things I found very helpful was to record the session using my phone. I used voice memos on my iPhone, but I'm sure other phones have a similar feature. That way you don't have to try to write things down and listen at the same time so you miss some of what's being said, and you can go back and listen to catch what may not have made an impression the first time. It is so easy to miss something in a high-stress situation. Sometimes we went back and listened to the recording, many times we didn't need to, but it felt good to know we had that option. Oh, and if you don't use that function regularly on your phone, practice a few times before you go so you know what to look for to ensure the phone is recording.

I told the doctor what I was doing and why, and none of them ever objected. If they did, I'd have wondered if we should continue using that oncologist.

 

[CJ2008]

Annette -

I went to many, many oncology appointments with my husband, and one of the things I found very helpful was to record the session using my phone. I used voice memos on my iPhone, but I'm sure other phones have a similar feature. That way you don't have to try to write things down and listen at the same time so you miss some of what's being said, and you can go back and listen to catch what may not have made an impression the first time. It is so easy to miss something in a high-stress situation. Sometimes we went back and listened to the recording, many times we didn't need to, but it felt good to know we had that option. Oh, and if you don't use that function regularly on your phone, practice a few times before you go so you know what to look for to ensure the phone is recording.

I told the doctor what I was doing and why, and none of them ever objected. If they did, I'd have wondered if we should continue using that oncologist.

This is excellent advice Annette (ETA I meant rainwood!)- not sure why I never thought of that! (even though thankfully I am not personally dealing with cancer - but I did go to a few appointments with relatives). In the office you always think you understand everything but then a few days later you can't remember. Especially like you say in high stress situations.

 

[LLJsmom]

Annette,

I am so sorry that you are dealing with so much. I was dreading on clicking on this thread, but I am glad I did. Woke me up from my self-involved stupor. People are dealing with real sh!t. I am praying for you and your family. You have given terminal new meaning. Here is to many more years of changing that definition. And in the mean time, people need to post MORE bling in SMTB. I will work on that this weekend! (((HUG)))

 

[JaneSmith]

"Cancer is not a single disease. It’s hundreds of diseases. Although there are many common themes in cancer, such as loss of responsiveness to growth signals with a resultant ability to grow unchecked. Other common capabilities of cancer cells include evasion of programmed cell death (apoptosis), inducing the surrounding tissue to provide a blood supply (angiogenesis), evading the immune system, and invading the blood or lymphatic systems to travel elsewhere in the body and take up shop in other organs, such as liver, lung, or bone. Although there are, again, common molecular themes by which cancers do this, individual cancers acquire these necessary (to the cancer) abilities by many different ways. Even cancers arising from the same cell type can be quite different. ...
... Not only is cancer not a single disease, but individual cancers are made up of multiple different clones of cancer cells under selective pressure to become ever more invasive and deadly. Looking at it this way, it’s a wonder we don’t all die of cancer. We do, however, virtually all have small foci of cancer within us, as I’ve pointed out before. Yet most of us do not develop cancer, and fewer of us end up dying of cancer, even though cancer is currently duking it out with heart disease as the number one cause of death in industrialized societies. Fortunately, the steps required for cancer to become deadly are difficult and numerous, and the body’s defenses against cancer are formidable."
https://www.sciencebasedmedicine.org/why-havent-we-cured-cancer-yet/




(Smithcompton, I'm so sorry, I hope you get good care and the answers you seek. And I apologise for commenting after you said you didn't want any more comments, but my heart goes out to you. If I could send you cake, I would!)