Statistics, Uncertainty, and Scanning for Cancer   April 14th, 2011

As I write this, I’m sitting in our rental car heading south from New Hampshire to Chelsea, Massachusetts. My ever patient and supportive wife Linda is driving as the skin graft on my thigh is still too delicate to allow me to use the gas pedal and brake adequately.

Our destination this morning is the Massachusetts General Hospital imaging facility, where I am schedule to get a brain MRI scan, and a chest and pelvic CT scan – one right after the other. The purpose of these scans is to determine whether the cancer that was found in the lymph node that was removed a couple of weeks ago has metastatisized. In plain language, the scans might help determine whether there is detectable cancer in any of my organs.

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

Sign on the 9th floor of the Massachusetts General Hospital Yawkey Center - 9E is the place for me

 

The oncological surgeon we met with a couple of days ago explained that these sorts of scans have pros and cons. The pro being, of course, that it could detect cancer in a non-invasive manner. I thought a con might have been the radiation or electro-magnetic effects, but as he indicated, the cons are mostly human in nature. Statistically (and in cancer detection and care, statistics are the guiding principal as I’m learning), he said, only 3% of scans actually turn up cancer in the scans, but in around a third of scans the radiologist might see something questionable. That in turn can cause anxiety in the cancer patients when the doctor reports back that he or she thinks the scans are okay, but is not entirely sure. It then becomes an issue of trust between the patient and the medical care givers of whether some possible anamoly detected in the scans needs to be investigated further or not. However, that 3% positive detection rate is still worth it, and as it was pointed out to us, the scans are a standard diagnostic after the next surgery I’m scheduled to have in order to help determine what adjuvant (additional) treatment I would be started on (with the best guess being a long regimen of interferon).

The surgery I’m schedule for on May 9th is called a lymphadenectomy, and its purpose is to remove all the lymph nodes in the vicinity of my right groin, where the cancer-containing lymph node was removed during my biopsy. This is a surgical attempt to eradicate the cancer before it has a chance to spread, as it is believed that the lymph nodes act as a temporary road block against cancer getting into the rest of the body. At the same time all of the removed lymph nodes are biopsied as well, and according to the doctor, there is a 7-22% chance, statisically, given my biopsy results, that more cancer will be found in some of the removed lymph nodes. Either way the surgery would be followed by the adjuvant treatment I mentioned above, as an additional safety measure to attempt to help my body eradicate any cancer still in my body.

However, that might also all be moot if the scans I am getting today do detect metastasis. In the unlikely event that happens, then my surgery might well be cancelled, as removing all the lymph nodes in my right groin would no longer be necessary to prevent the spread of cancer, and another treatment path would need to be determined.

I have been learning over the last couple of weeks that cancer detection and treatment is still a very hit-or-miss sort of thing. There appears to be great understanding what cancer is (basically, cells that for some reason start replicating in an uncontrolled fashion), but beyond that, things get a bit foggy. There are apparently a number of different cancers which in turn respond (or don’t) to various treatments. My form of cancer, melanoma, is one of the ones for which the treatment options are pretty limited. I’ve been told that chemotherapy, which is a treatment that many people associate with more common forms of cancer, is not particularly effective with melanoma. Needless to say, I am slowly ramping up to start my own research into melanoma so I can be better prepared to understand my options at the crucial points in my treatment.

The lack of complete understanding of how to eliminate cancer, or even detect it, is part of what makes cancer such a terrifying disease. We expect doctors to have all the answers, but in the case of cancer what they really contribute is more knowledge and experience, and thus provide the best statistical chance for survival. It then becomes a matter of trust, and a matter of hope that your trust is well placed. That said, Linda and I feel very good about our medical team so far, but blind trust and faith is not our way, so we will be working to improve our knowledge as much as possible so that I can be a fully informed patient.

One of the two barium sulfate containers I need to drink before my CT scan

One of the two barium sulfate containers I need to drink before my CT scan

As I submit this post, I have just completed my brain MRI – 45 minutes in a claustrophobic tube where I was not allowed to move my head at all, but given time to occasionally clear my throat. I’m now downing two containers of a barium sulfate tracer solution that will assist in analyzing my upcoming chest and pelvic CT scan.

 

The scan test results, or, more accurately, the analysis of the scans, should be completed no later than Monday. Until then it’s a matter of waiting anxiously.

Adding to the anxiety is that we found a nice short-term rental apartment just minutes from Massachusetts General Hospital, but are now waiting for our rental application to be approved. We should know about that by Monday as well. Having the apartment is important because if things go as planned, I will have regular appointments at the hospital starting at the surgical date going forward, and if I am put on interferon, I will be needing daily intravenous applications for the first month of treatments followed by self-injections three times a week for a long time thereafter.

Wish us luck.

 

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20 Responses

April 14th, 2011 at 12:46
Meryl Says:

Jake and Linda,
Thanks for the update. In the past three years I have gone through many cancer scenario’s with immediate family members. 1. Non-Hodgkin’s Lymphoma and 2. Testicular Cancer (my nephew) which we are going through right now.
First, any Radiology report…catscan, ultrasound, xray, MRI, the radiologist “USUALLY” has something questionable written within the report. As a tech..seeing MANY reports from Radiologist’s…I believe they do it to “cover themselves”. Now there may still be something questionable and you should always read and follow up on these reports..but in my opinion the Radiologist tends to say as little as possible, which can and does make the patient anxious.
My nephew also had a radical lymphadenectomy of the glands on his Rt. side, para aorta on down. He had his done laparoscopiclly, which they said was less invasive.
The surgery took 5 hours (seemed invasive to me!)but we are 2 weeks post surgery..and he is walking and driving now. He got his pathology results and the nodes were negative. They still have to moniter him closely as his is very aggressive. But he is doing well.
Cancer cells are sort of the “fountain of youth” cells as they don’t know to stop growing…now if science can turn that around in our favor it would be great!
Please let me/us know if you need anything…one step at a time…and question EVERYTHING.
Love you guys!
Meryl

April 14th, 2011 at 12:57
Barbara Leary Says:

Thank you for the update Jake. I am glad to hear that they are giving you the whole scenario when explaining the tests, procedures, etc to you. That is very key IMHO, and still allows for you to do your own research. As a medical provider and patient having undergone some of these procedures, I believe being honest and thorough with the patient is in the top tier of what needs to happen in the physicians office and, unfortunately, lacking at times. Best wishes continue!

April 14th, 2011 at 13:05
Carole Baker Says:

Thank you, Jake. Your updates are extremely informative, insightful and (hate to use this term) actually very interesting. I cannot begin to imagine what you are going through. We are with you & Linda & the kids all the way. Prayers & good vibes coming your way at all times. My cousin, Donna, was advised by the oncologist yesterday that she will need to undergo chemo sessions even tho her nodes were all negative. I will walk with Donna through her ordeal in a long distance manner as she is living in Florida and we are in NJ. Hugs. Carole & Joe

April 14th, 2011 at 13:25
Jackie Says:

Hi Jake and Linda,
Power to you both for going through this! Winfred Dania is also getting treatment but in Curacao…detect it on his intestine.

April 14th, 2011 at 13:34
Mark Danehy Says:

Jake and Linda,

Our prayers are with you. Thanks for letting us know what was up (saw your post the other day and was concerned). Hang in there and think positive.

Mark and Lori Danehy

April 14th, 2011 at 13:40
Barbara Says:

Your blog helps me feel I’m right there with you & Linda, but makes me wish I could share the burden. Thanks for all your information.

April 14th, 2011 at 15:04
LaDonna Says:

prayers up!!!

April 14th, 2011 at 15:30
Cynde Says:

Jake, if they go the Interferon route, here is a great article written for patients in regard to what to expect with IV infusions, etc.

http://www.medicinenet.com/iv_drug_infusion_faqs/article.htm

And again, we are thinking of you all and know how nerve racking it will be to wait for the results…you have a lot of people sending prayers and healing thoughts your way. Know that we love you…and linda and the kids…

April 14th, 2011 at 15:57
Lisa Amidei Says:

I’ve never been the best with putting into words what I’m feeling, thanks for sharing your ordeal. Now I’ve got a mild case of the ‘weepies’ reading your posts and all the comments. You are now first up during Clare’s bedtime prayers. Praying for strength, courage and knowledge for you, your family and the doctors. And of course a clean bill of health.

April 14th, 2011 at 16:56
Dawn Spencer Says:

Jake, I put you on the prayer list at our Church Sunday. We have amazing prayer warriors :) Thanks for posting ongoing information.

April 14th, 2011 at 19:02
Vince D Says:

Thanks for posting.. If we don’t comment we are reading (as I’m sure many many others are).We are with you, reading your blogs and of course wish you the very very best!! Wish I had something more comforting to say.

April 15th, 2011 at 00:00
Mark Sage Says:

Glad to hear you got the apartment. You’re going through a lot of treatment, but feel that youll be right as rain soon

April 15th, 2011 at 07:45
Henry & Gina Says:

Jake,

Good luck. We are thinking of you and your family and we wish you all the best.

April 15th, 2011 at 13:44
Liz Ginocchio Says:

Hi Jake,

Thanks so much for all of your detailed postings. I am following like a hawk!!!! It really makes me feel that I am not alone. I had my scan today, pelvic and abdominal this morning and I had to drink the same berry flavored barium. It really wasn’t bad. In just a few I meet with my Radiological Oncologist…..Once again thanks so much for making me feel like I’m not the only one out there. Hugs and kisses to you, Linda and the Kids from me and Ed!

April 18th, 2011 at 14:06
Cynde Says:

Jake, thinking of you today. Hope all of the results are NEGATIVE.

Liz, hugs!

Cynde

April 18th, 2011 at 17:09
Marion Wilson Says:

Hi Jake,

Just thinking about you as you should have had your results from the scans today. Please let me know how they went – I am praying for a positive result.

Love to you all,

Marion

July 28th, 2011 at 13:57
Laurie Dickerson Says:

Hi Jake,

I stumbled upon your site while searching malignant melanoma. I hope that you are doing well and am myself very appreciative to see a site with so much information. My brother was diagnosed at the first of May with malignant melanoma. He was having headaches, and had lost his balance a couple times. He had a brain tumor (2.5 cm) removed from his brain (malignant melanoma). No primary site was ever found.

The surgeon was able to remove 99% of the tumor. However 1% of cells remained in the brain, and then he has multiple cancer cells spread down his spine. The neurosurgeon said 90 days. He has undergone radiation treatment to the brain and spine (15 treatments)which finished up about 5 weeks ago.

He remains real lightheaded, light in a fog state, and is real unsteady walking. He just finished 4 MRI and a catscan (2nd batch of them). A nurse practitioner has told my sister in law that they only have 1/2 the test results, but thus far she doesn’t see new growth, and that he is stabalized as far as the first batch of results go, and can live a number of years being stabalized, and as long as he is then he won’t require anymore radiation. I’m not sure what to make of her comments, as it seems we are constantly going from looking at a very bad scenerio to stable. Then as aggressive as this cancer is, to stop treating it; I wonder if that’s the best. The doctors other than the neurosurgeon are very vague and confusing at best. And there’s so much mixed information that contradicts each other online. I guess I’m just totally confused on malignant metatisized melanoma.

Wishing you and your family the very best.

August 1st, 2011 at 17:27
Jake Richter Says:

Hi Laurie,

My initial reaction to your uncertainty and the mixed messages you are getting is that you might want to consider getting a second opinion, preferably from a melanoma specialist. Alternatively, get your brother’s cancer team together and explain that you feel the messages you are getting are inconsistent and contradictory, and ask them why that is. Don’t let yourselves be put off by vagueness. Your brother has a right to all the information available. Maybe the information isn’t conclusive, but if that’s the case, you should be made aware of that.

Good luck and keep us posted!

Jake

August 5th, 2011 at 14:37
Laurie Dickerson Says:

Jake,

I just read about your recent results. I will keep you and your family in my thoughts and prayers. You are an incredibly strong person, especially with all you are dealing with yourself; to still provide all the information you do for others to read, learn from, etc… I really admire you.

The last time I wrote; I was so mad that day watching everything my brother keeps dealing with, and feeling totally lost on what was happening, could be expected, etc… I also felt as if the doctors were being too vague with him and us “the family”. I took your advice and starting questioning everything and every doctor involved. My brother at that point was so fed up that he also demanded that he be told everything.

The latest results (MRI and Catscan)show that since doing the radiation treatments, the cancer hasn’t spread in his spine. There is a spot in the brain that appears to be diminishing. We have been told that he is considered “stable” at this point, and that stable is good (not spreading). However, we have also been told that the unsteadiness, light-headed, and apparent fog state he always feels from morning til night is definitely caused by where the tumor had invaded the cerabellum, which controls a person’s balance. This will not ever go away, we are now told.

We were further told that is a 100% guarantee of melanoma reoccurring within his brain. He (my brother) wanted to know time frames, which the doctors have stated they give as there is no way of pinpointing something like that down. What was said is that it usually reoccurs rather quickly. He is scheduled for another brain MRI on October 5th. We also found out that he can’t have whole brain radiation again, as he’s had the max they can give of that. However, if and when a tumor does reoccur in the brain, the neurosurgeon will do gamma knife surgery and pinpoint the radiation directly at the tumor. Also, we were told today that there is a new melanoma chemo that just came out 2 weeks ago, that is currently shrinking tumors in the brain.

Lastly, we were told that he doesn’t need to think about going back to work again (something my brother was hoping for, but we had already applied for social security disability). We were also told that no, he’s not likely to remain stable for a number of years as previously stated by the CNP. We pretty much just wait for the melanoma to reoccur.

Thank you for responding to me. It was your reply that made me push even harder for answers. The diagnosis is conclusive also; stage IV melanoma brain cancer. My thoughts and prayers once again are with you, your family, my brother, our family, and all the many others out who are also dealing with melanoma.

August 6th, 2011 at 14:43
Jake Richter Says:

Laurie,

I’m so glad you found my advice helpful for your brother. I have been reading a book about patient advocacy called “When a Loved One Falls Ill: How to Be an Effective Patient Advocate” by Gerri and Brian Monaghan. Brian was also diagnosed with Stage IV melanoma in his brain about a decade ago, and this book chronicles how he and his wife Gerri dealt with the conflicting opinions and treatment suggestions. It has some good resources too. Might be worth checking out.

Definitely do not ignore the option of clinical trials and new drugs too, as things are moving very quickly in the melanoma world.

As a fellow melanoma warrior you have my thanks for protecting your brother and trying to get him the best treatment possible. Those of us with melanoma would be lost without friends and family fighting for us.

Please keep us posted on his status!

Jake