Just Diagnosed

[Tammie Westcott]

Hello 

I am new to this group.  Never thought that I would be here.  No one in my family has dealt with cancer before.  Luck of the draw, I guess.  On October 1st I went to the ER with pain in my left shoulder and pulsing through to my chest.  It hurt worse when I tried to take a deep breath.  I went, thinking it was heart related...was I in for the shock of my life.  I was quickly evaluated in the ER and my heart was eliminated as a cause for my pain.  Then came a whirlwind of x-rays and CT's, blood work and Dr.'s asking all sorts of questions.  Finally, in the wee hours of the morning, I was given the bad news...they had found a mass in my chest and it was encasing the pulmonary artery.  I was being admitted and would be having further testing to confirm a diagnosis of lung cancer.  CT's, MRI's, a bronchoscopy, and 2 separate needle biopsies later, I was sent home with a diagnosis of Stage III Adenocarcinoma.  I have not received the final staging from the oncologist yet and have a PET scan scheduled for later this week, so I am certain this is not the final staging level.  Until all of the testing is done, I sit and wait, and think, and try not to think.  To say the least, I am overwhelmed with a mix of emotions and numbness.  I go from hope one minute to planning my final wishes the next and all points in between.  Mostly I am scared.  Scared of the unknown, scared of the pain and other yucky things that go along with this diagnosis.  I worry about the financial drain on the family and I worry about my husband and how he is coping with this.  Sorry this is so long.

[Tom Galli]

Tammie,

No need to apologize for the length of your post.  Write whatever you feel compelled to write and we will read every word.  Welcome here.

When I read your diagnosis story, in point of fact, when I read any diagnosis story, it brings me back to my experience.  Like you I was (still am) overwhelmed.  But, I'm here nearing 14 years of no evidence of disease from my advanced stage non small cell squamous cell lung cancer and if I can live, so can you.

Hopefully, the PET scan confirms your Stage III disease.  If it doesn't, no matter.  There are many survivors of Stage IV lung cancer on this forum -- both adenocarcinoma and squamous cell. Adenocarcinoma survivors also benefit from new Targeted Therapy methods that have been discovered and implemented in treatment.  Moreover, depending on the biopsy results, your tumor markers might show suitability for Immunotherapy treatment methods.  And radiation advances have also dramatically improved treatment outcomes.  One of the first radiation advances, CyberKnife a form of SBRT, saved my life and I was one of the first lung cancer patients to receive this newly approved form of treatment.  Perhaps curative surgery is still in the mix but the tumor location suggests a degree of difficulty.

Here is something I wrote to help you set the table for life as a lung cancer survivor.  Fear is indeed normal and while I've been blessed with nearly 14 years of life after diagnosis, I still experience a great deal of fear before my semi-annual oncology consultations.  The only suggestion for fear mitigation might be learning everything you can about this disease.  This has two benefits: necking down the causes of fear to conditions applicable only to you, and enabling you to ask the terribly perceptive question about a treatment method at a future oncology consultation. So while you sit and wait, learn and think.

Stay the course.

Tom

[Susan Cornett]

Tammie,

Glad you found us.  That initial diagnosis is absolutely a whirlwind of emotions.  First, you don't have to endure pain.  Ask for relief; if you don't get it, find a doctor who will give you relief.  The first question my oncology nurse asks at each appointment is about my current level of pain.  Second, I understand your fear.  When my surgeon walked in and told me what it was, I almost passed out.  I was okay (I won't say good or steady) until I received news that my cancer was also in my thyroid. I mentally started giving my belongings away and was at the end of my rope.  For my own sanity, I had to add an anti-depressant to my daily routine.  That has helped keep me sane for the last year.  What helped me the most, though, was this forum.  I found long term survivors, great information, and a sense that all is not lost.

I offer you a couple bits of advice.  The first is don't Google statistics.  They're awful and really don't reflect the advancements we've seen in lung cancer treatment the last couple of years.  Those statistics also don't take your overall health, age, and circumstances into account. The next bit I offer is to pick up a journal or notebook and start writing down all of your questions.  This will help you remember to ask your medical team the questions when you have an appointment.  My oncologist is surprised when I don't have my journal in front of me.

Please keep us posted.  We've all walked your path and want to help you.  

[BridgetO]

Hi  Tammie,

Welcome here. I second everything that Tom and Susan said and I don't have much to add. Hang in there and keep posting. You can learn a lot here and find support.

Bridget O

[Tammie Westcott]

Ok, so everything is in except the mutation testing.  I am now Stage IV metastatic lung cancer.  The PET revealed several nodes in my chest that are affected and the biopsy of the spine came back positive as well.  We will be proceeding with palliative care in the form of 2 types of chemo.  I have my "Chemo Teaching" on Thursday of this week, port will be placed on Nov 1st and chemo to start shortly after.  I have to say here, that I kind of already knew this would be the final outcome of the testing.  I just had this feeling deep down inside. What bothered me the most was watching the pain in my husband's eyes,  and hearing the tears on the other end of the phone when I told my eldest son the latest news.  How do you help your loved ones through this nightmare?  I don't want them to change their lives, but I know that they feel compelled to stick close by.  How do you try to maintain some form of "Normal"?

[Tom Galli]

Tammie,

How does one try and maintain some form of "Normal?" This is a great question.  I got there by not trying. Your loved ones don't need to change their lives; neither do you. At this juncture, you are going through treatment.  Your loved ones will stick by you because they love you, not because you have cancer or are in treatment.  

Undoubtedly you will need help during treatment.  That is normal.  I alway need help when going through the first new experience of my life and lung cancer treatment is indeed a new experience.  Those close to you will help.  We will help.  In some respects, the treatment experience is like learning to drive a car.  It is frightening and frustrating (especially parallel parking) but with time and experience, driving is mastered.  Both fright and frustration apply to treatment and time and experience are the keys to overcoming them.

For some of us, treatment requires a lifestyle change.  I needed to learn to live with one lung and chronic pain.  But the same two elements helped me make changes in my life -- time and experience.  I found over time there were things I could do and things I couldn't do.  Experienced help me change my approach to the latter.  

You can do this thing.

Stay the course.

Tom

[BridgetO]

Hi Tammie,

That's a tough diagnosis and it's normal to be confused and upset. Tom's advice is all excellent. (as usual!). My lung cancer was Stage 1, so not so difficult to navigate up til now. I did have a different (non-lung) cancer that was stage 3 and aggressive, so I have been through some aggressive treatment that included surgery, chemo and radiation. Two things I wish I had done differently. One is to ask about getting a port. It's good to hear you're getting one. My chemo was all done into veins and since only one arm could be used, getting vein access was difficult

Hi Tammie,

That's a tough diagnosis to hear. To be confused and upset is normal.

My lung cancer was early stage. I had a prior non-lung cancer that was Stage 3 and aggressive and for which I had surgery, chemo, and radiation and a bunch of long term side efects of treatment. There are a couple of things I wish I had done differently at that time. First, wish I had got a port. I had all of my chemo direcly into arm veins and since they could only use one of my arms,, vein access became difficult and often painful . I think you'll be more comfortable with a port. The second is to ask for,or be willing to accept more help. I had my spouse, who was great, and a sister-in-law who stayed for 10 days or so  after my surgery which was wonderful. I  had  friends who offered help, but it was hard for me to accept it. I wish I had been able to ask specifially for what I wanted or needed, such as a ride to an appointment or some specific food on a specific date. I did ask a friend to put up a grab bar in my shower, which she did, and for which I am forever grateful.  I have found that friends want to help out, but they don't know what we need unless we tell them specifically.

There were other people I could have asked for thngs, but I was hesitant. Wish I hadn't been. I have had friends with cancer who used webistes  such as Lots of Helping Hands,(just as an example, there are others,) that let you put up  specifically what you need and send it to a list of people  you designate, I found out about these later, but if I need help in future, I'll definitely check out what's available.

Also, think about who, other than friends, can help while you're in treatment , so that you can relax more  while feeling that you're putting less onto your family.  I got groceries delivered,. I also got rides  to some medical appintments from an agency here called Ride Connection, which  uses volunteers.  My mother, when she had cancer, hired a weekly housekeeper-- this can be a godsend if you can afford it. That way you can reserve  family time  for when you really  need emotioal support and  their company.

Working on the practical things like this helped me feel less helpless and more in control, important at a time when my body was doing it's own thing  with cancer and side effects of treatment and the medical system was doing its own thing  that was often beyond my understaning.  

Hang in there and best of luck.

Bridget O