My story

[karenwentzel]

I had an upper respiratory infection in early February, 2011. Over the last 1.5 years, my allergies and asthma have gotten worse. When I finally went to my primary care office in late February, she restarted more allergy meds. I did complain at that time of a clicking sound at end inspiration. It was a mystery to her as it was to me. She set me up to see her in follow up on March 2nd. I ended up needing a steroid 'burst' to get my asthma in check. I finished the steroids on Sunday, February 27th, and by that night, my lower back, bilateral hips, and bilateral knees were killing me! I tried ice, heat, icy hot, advil, nothing would take this pain away. I went in on that Wednesday, March 2nd, and told the PCP about this extreme pain I was in. She thought it was something that had gone systemic and recommended xrays then follow up with somone in the rheumatology department. Just as an after thought,I told her that my breathing still wasn't quite right. She decided to get a chest xray.

Before I could drive from the PCP office to my office, she called me and told me my right upper lobe was collapsed and I needed a CT scan of the chest. I complettd this as soon as I got to my office on the hospital campus. I sat at my desk looking at my other images that had been completed earlier. Back, hips, and knees just showed degenerative changes. I thought, I'm 46, okay I have arthritis. Within an hour my PCP called asking me to come back to her offie to discuss the CT scan. I refreshd my screen and my CT report was there in front of me. I went into shock at that point and have not returned to normal since.

The CT showed a large right hilar mass consistent with malignancy with multiple lytic lesions suggestive of extensive mets. I was directly admitted my the hospital then sent for MRI brain and CT abdomen pelvis. It would seem that I have lots of little “sparkles” that lit up over my entire chest and brain. I have spots on my liver and kidneys and right femur. HOW DID THIS HAPPEN SO QUICKLY?! I had my first round of chemo that weekend.

My life has turned into BC (before cancer) and AD (after diagnosis). I still am trying to figure out what the heck has just happened to me? Not sure how long this stage takes to sink in what is going on.

That’s my story so far. I hope to be writing updates for a long, long time!

Karen

[Joppette]

Hi Karen,

Welcome here. We call it the place no one wants to be but are glad it is here. I can only imagine your shock! Mine was found early, but it was still a huge shock. To find it so advanced like this, I can only imagine. And you are so young.

I take it you are in the medical field from how you describe your job and access to the CT and X ray results. Tell us more about you!

If you could tell us if this is NSCLC or SCLC, what stage you are at, what kind of chemo treatments, etc., those of us that have experience with what you are going through (and there is someone here that has gone through what you have), that would help.

We will be here for you. I so wished I had known about this place when I went through my initial dx and treatment.

I totally agree about the BC and AD status. Life changes dramatically but it can change for the better!

Judy in MI

[karenwentzel]

My diagnosis is SCLC, extensive due to all the mets. My chemo regime includes Cistplatin and VP 16. My 2nd treatment will begin March 28th.

I am an RN. I work at Mayo Clinic as a kidney transplant nurse coordinator. I love my job but wonder if or when I can return. I am 46 years old with 3 children ages 25, 11, and 10. The youngest 2 are still at home. I am single but my ex lives close and has really been a great help.

I am going to fight this for me and my kids.

Karen

[Donna G]

Hello Karen. I am an RN also here in Minnesota. I had NSCLC. I went to the Dr. thinking after moving here that I had an Ortho problem from unpacking everything --too old to do that at 50. Turned out it was a tumor in my RUL pressing on nerves that run by the apex of the lung.

We also have in commom I was treated with Cisplatin and Etopiside (VP16), Click below to read my Story.

Wish you all the success I have had!!! with that treatment. SCLC is very succeptable to chemo. I know many that are in remission for over 10 yrs.

Keep us posted.

Donna G

[karenwentzel]

Donna,

I am very happy to meet you! Thank you for telling me about the SCLC survivors that you know. I need to hear these things as I move forward with this fight.

You don't work at the MOTHER Mayo, do you?

Karen

[Donna G]

No but every one in Minnesota certainly has heard of Mayo!

I work for Fairview.

Donna G

[Annette]

Karen,

As others have said nice to meet you - even if the reason why is not so nice. I'm one of the lucky ones diagnosed early - and had two surgeries. Almost 2 years now. As you can tell by the response to your post there are many people here that have traveled down the various paths of this disease. Any question, thought, feeling, tear, scream, etc. you share one of us understands and will have the proper words, shoulder, hug, etc. to help. I have been helped here everyday since I found this site and look forward to helping you if I can. Especially with the shell I'm betting you are trying to show your children - you will always have us as virtual friends - with great shoulders.

Best wishes as you carry on this journey - let us know if there is anything we can do for you.

Another thought - we have some excellent medical professional help at cancergrace.org. There you can ask the hard "medical" questions and get some answers from medical professionals - be sure you check that site out too - many of the people that frequent here check in over there as well.

As always - anything we can do to lighten your worry load - here we are.

Annette