4 Things You Should Know When Diagnosed with Cancer

I have a CT scan this morning to check on LK (left kidney).  I’ve been giving him pep talks all week, reminding him what a good little kidney he is and how proud I am of the progress he’s made getting rid of the cancer.  :)  I expect to get the results on Friday when I see my doctor prior to treatment and am believing it will be good news! 

Source: ThinkStockPhotos.com

Whether we are ready to it admit it or not, it seems that most of us will either be diagnosed with cancer ourselves or have someone – or many someones – close to us who are diagnosed with cancer during our lifetime.  In my opinion, it is not acceptable or wise to receive a cancer diagnosis as fact and blindly follow your doctor’s treatment plan – no questions asked.  As a responsible patient, you have an obligation to yourself and your family to become as educated as possible about your disease and available treatment options.

Sometimes people are diagnosed during a very short period of time – things happen rapidly and a treatment plan is developed within days or weeks.  My diagnosis took place over a three month period before we ever got to the point of discussing treatment, so I had plenty of time to read and learn about all the possibilities I was facing.  During this process, I learned a few things that I think might be of help to someone just beginning this journey or someone helping a loved one through the maze of cancer diagnosis and treatment.

1. You can never ask too many questions of your doctor and medical care team.  If they have your best interest in mind, they will not mind the questions.  If they are bothered by your questions, you should seriously consider finding another team to care for you.  It’s as simple as that.  I know a lot of people trust their doctors and would never want to question them, but asking the right questions could mean the difference between a treatment plan that saves your life and a treatment plan that prolongs your life for a while.  There are numerous sites that provide you with lists of questions to ask.  I think these lists are wonderful because, really – whose brain is functioning well enough after you hear the words, “you have cancer” to think of all the questions you should ask??  I know mine was not.  One exceptional site is the Lance Armstrong LiveStrong site with tons of resources for new cancer patients.
2. Do not be afraid to obtain a second opinion.  If your doctor opposes this idea or thinks it is unnecessary, you should seriously consider finding another doctor.  I’m not kidding.  Your survival is serious business.  If you are too nervous to mention it to your doctor, take someone with you who can speak for you.  A good doctor who wants you give you the very best care will not get a bruised ego by this request – he/she will welcome the additional knowledge and input into the diagnosis.
3. You should research and learn as much as you can about your form of cancer and the available treatment options. While my sisters did a crazy amount of research when I was diagnosed, they still did not learn more about my cancer than I did.  No will will be a better advocate, a better researcher, or a better questioner than you.  Once the shock starts to wear off, sit down at your computer and start searching, reading, and taking notes.  Write down every question you have because you will soon forget it.  I learned after talking to my doctor about an article I found that I had access through a simple Google search to some of the same medical articles he reads!
4. You should never assume that your cancer is just like someone else’s.  Martha Sue may have had non-hodgkin’s lymphoma, but hers could have been a completely different variety, stage, and location on her body than yours.  No two cancer patients are exactly the same.  Breast cancer for one patient may be different than breast cancer in another patient.  Don’t assume that a one-size-fits all treatment plan will work best for you.  It is important to have as much diagnostic testing done as possible so that you know the specific form of the disease that you have.  If you have doubts or questions, ask about the possibility of more tests being run.  One of the benefits of my lengthy, drawn-out diagnosis period was that significant testing was done on the biopsy specimens, including testing done at specialized labs in Boston.

In my opinion, you cannot have too much knowledge or too many resources at your disposal when faced with a cancer diagnosis.  Knowledge is power, and at a time in your life when many people feel very helpless, that can be a good thing.

Have a beautiful Wednesday!
♥ Rachel

A Little Background – Part II

Meeting the Oncologist

If you missed yesterday’s post, go here to read about the beginning of this journey.

The dermatologist scheduled an appointment for me with Dr. Davey Daniel of Chattanooga Oncology and Hematology Associates.  The first thing I did was Google him to find out everything I could about his training.  He obtained his undergrad degree from the University of Georgia.  It’s not Auburn, but it’s close enough.  And thank heavens he did not graduate from the University of Tennessee!  (My apologies to my UT friends.)  I don’t know if I could have placed my life in the hands of a UT grad.  Just  kidding!  Sort of.  ;)  The best part of his education is that he received his medical degree from Johns Hopkins in Baltimore – the THIRD best cancer hospital in the country behind M.D. Anderson in Houston and Sloan-Kettering in New York.  Now, THAT was some good news!

Prior to meeting with Dr. Daniel, I prayed and prayed that he would be the right doctor for me – that he would be extremely intelligent, that he would know how to address my lymphoma, BUT that he would also have a compassionate side and be approachable.  I needed someone who would listen to me, take my concerns seriously, while at the same time telling me what I needed to hear – not just what I wanted to hear.  God answered that prayer in a huge way!  Very soon into our first visit, Barry and I both knew Dr. Daniel was all of these things.

Dr. Daniel spent plenty of time explaining what we knew about my diagnosis, which wasn’t much at the time.  The biopsy that had been sent to Boston was still in Boston, so we weren’t able to make plans based on that just yet.  He asked me all the routine questions:  ”Was I having night sweats”?  Not really, but a couple of times in recent months.  ”Had I lost weight?”  Well, yeah, some, but I was trying a little.  Big grin.  :)  ”Was the weight coming off easier than normal?”  Well, yeah – thanks for bursting my bubble, Dr. Daniel!

He then did a physical exam.  I forgot that morning that I had pinned the waist of my pants (yes, I had lost a little bit of weight), he noticed (observant little rascal), and said he wanted to order a bone marrow biopsy in addition to a routine CT scan of the chest, abdomen, and pelvis to see if there is something else going on beyond what we could see on the skin.  All of this sounded pretty routine.

Testing, Testing, Testing

Thus began the crazy month of testing.  I had the CT scan and bone marrow biopsy and then followed up with Dr. Daniel.  He said the bone marrow biopsy looked clean (woohoo!!), but the CT scan showed that my left kidney was enlarged and “thick.”  Really??  I had not had any symptoms indicating a problem with my kidney other than occasional, minor left flank pain.  Dr. Daniel said I would need to see a urologist and referred me to Dr. William Young at Chattanooga Urology Associates.

The interesting thing about both of these doctors is that they are both very close to my age.  At what point did I get so old that the doctors are now my age??  I still feel like a kid sometimes, so it’s a little disconcerting to place my medical care in the hands of someone who graduated high school around the same time that I did!  ha ha  But I have to say we have been tremendously blessed by both of these doctors throughout this process.

We met with Dr. Young the next day.  He was not quite what I expected.  Tall, lanky, and a little scruffy, but after spending a little while talking with him, we realized he knew his stuff and was quite personable.  He said he wanted to go in with a scope and take a look, possibly grab a biopsy of the kidney and insert a stent, if necessary to help the kidney drain.

So, the next day, I had outpatient surgery and woke to find out that I now was the proud new owner of what is known as a Double-J Uretal Stent.  I know you guys are jealous. Don’t try to hide it.

Apparently, the kidney was so swollen that Dr. Young was not able to get the scope in to it to look around, nor was he able to take a biopsy.  Who knew?  You have to wonder how it’s possible that you can have an organ that is not functioning properly and not even know it.  According to Dr. Young, because we have two kidneys, the other one automatically compensates when one “malfunctions” which means that some people can go for a long time before seeing symptoms of kidney dysfunction.  Because the kidney was holding fluid and not draining as it should, he inserted the stent to allow it to drain into my bladder.  He said this would be critical once I started chemo (if I had to have chemo) because the kidneys play an important role in flushing the drugs and bad cells out of your body.

Now, let’s pause here for a minute and talk about this double-j stent.  It sounds innocent enough.  In fact, it sounds like a good thing because it is helping the kidney do it’s job better.  BUT if a doctor ever tells you he/she thinks that you need one, tell them they had better think again! This little guy is about 8-9 inches long, starts in your kidney, runs down the ureter, and ends in your bladder. Dr. Young said that some people notice it (can feel it) and others don’t have any problems with it.  Well, I’m here to tell you that I notice it.  All the time.  Take my advice.  If anyone ever offers you one of these devices, politely decline and tell them you don’t really need that kidney anyway – you’ll just use your other one.  :)

Because he wasn’t able look inside the kidney, Dr. Young ordered a 4-phase CT scan so that he could get a more detailed look.  The 4-phase scan showed a “small mass” in the kidney.  At this point, I was a little freaked out.  To me, mass sounds so much worse than “swollen” or “thick,” but after researching it, I learned that in cancer terminology, a mass can be a solid object as well as an enlarged or thickened area of abnormal cells.

Dr. Young scheduled me for a guided needle biopsy to investigate “the mass.”  With a guided needle biopsy, they use conscious sedation (great stuff if you’ve never had it!) to relax you while they use a CT scanner to locate the area they want to biopsy.  They then insert a long, hollow needle in through your back and then use some tiny tongs to grab a sample of tissue.  It’s really painless.  The worst part of the whole experience was having to lie on my side applying pressure to the needle insertion site for three solid hours afterward.

When we met with Dr. Daniel the following Wednesday, he told us the pathologist was not able to conclusively diagnosis the problem in the kidney.  The pathologist actually requested MORE tissue, so I needed to have another needle biopsy.  Good grief.

While we didn’t know exactly what was wrong with the kidney, Dr. Daniel had finally received confirmation from the lab in Boston that the lymphoma in my skin is indolent, b-cell lymphoma. Nothing surprising about that, and with all of the kidney excitement now, it really seemed kind of minor to me.

One more needle biopsy later, we again meet with Dr. Daniel and he tells us that the results are inconclusive.  In fact, the pathologist noticed some of the cells behaving in a way that was indicative of hodgkin’s lymphoma – not non-hodgkin’s like what was confirmed in the skin.  As my friend, Cindy, would say, “oh my stars!”  At this point, we are all thoroughly confused.  My frustration level hit a new high when he said pathology was sending the biopsy to the lab in Boston for further testing.  Yes, the same lab that took three pathologists five weeks confirm the skin lymphoma diagnosis.  It’s nice to be unique and special, but when it comes to medical issues, plain jane is so much better.

To  his credit, Dr. Daniel was very sympathetic to our frustration, but could not responsibly start treating something until he had a confirmed diagnosis.  We understood this, but still.  But still!  The waiting was getting very old by this point.  There were still so many unknowns, although Dr. Daniel did continue to reassure us that he felt like we were still looking at an indolent form of b-cell lymphoma in my kidney.  However, he did say that if it was hodgkin’s (and he didn’t think it was) the treatment would be six months long, every other week, and I would definitely lose my hair.  Have mercy.

So we waited.  And we waited.  And we waited some more.  Then FINALLY, on August 3, Dr. Daniel called to say the lab in Boston has determined that I have indolent, b-cell follicular lymphoma of the kidney.  I told him I might just be the happiest person in the word to actually get a cancer diagnosis!  I was so relieved just to know what we were dealing with and be able to move forward.  He scheduled an appointment for me to see him on Monday to go over everything, and if I’m comfortable with everything I hear, I could start treatment that day.

Now, if you’ve stuck with the story this far, kudos to you!  You are either the sweetest person in the world for caring this much about me or maybe you are just having a slow day at work.  Either way, thank you for reading and caring.  You guys have encouraged me so much already in this journey and I am so very grateful for you!

If you want to come back again tomorrow, I’ll talk about the official diagnosis, the treatment plan, and what it all means for me in the short-term, as well as the long-term.

A Little Background – Part III