Isunique

Re-Introducing myself

16 posts in this topic

My name is Sarah. I was first dx with Stage 1b nsclc  in 2008. I had an upper left lobectomy on April 8th 2008. No chemo. I have been clean for the last 8 years, then this year it came back. My PCP ordered a blood test that my oncologist didn't order. I had stopped going to my regular oncologist by this time and just having my PCP run the needed tests. Well, the CEA levels were a little high, so he said lets repeat again in 4 months. Higher again, CT scan next, small spot on right lung. PET scan came back positive. Small tumor located near right pulmonary artery. Had to find a new oncologist, since the one I had been seeing for over 25 years was finally retiring (had gall bladder cancer in 1992). Met with new oncologist at he U of Michigan Comprehensive Cancer Center. Tumor's small, lets just wait and  watch it. Come back in August. Still had to go to the tumor board. Call the next day, board disagrees, more tests and have to meet with a surgeon. They can't biopsy the tumor because it is so close to the artery. So, I went from relief to dread in less than 24 hours. I am an emotional wreck. For whatever reason, it is so much harder this time. I'm scared. Everyone keeps telling me how strong I am, when all I want to do is sit down and cry. I know that you will understand. Thanks for letting me vent. 

Tom Galli and Mally like this

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Sarah,

I do absolutely understand. I had 4 recurrences after treatments. Each one felt like an emotional punch in the gut. 

I wish I had a magic pill that would wipe away this madness.  You know the drill.  A treatment plan will emerge and you'll need to suite up for the beat lung cancer game.  

Welcome back and stay the course.

Tom

 

LaurenH, Myra Rapport, Mally and 1 other like this

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Hi, Sarah.  Recurrences suck, but there's always a silver lining: you are ALIVE to even have a recurrence.  You've beaten cancer twice so let's do it again.  I'm fighting a recurrence in a lymph node that couldn't be removed because of its proximity to the aortic arch.  Let us know how you're doing and, if you feel comfortable, share your plan of attack.  

Mally, Tom Galli, Isunique and 1 other like this

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Sarah,

Please post an update on you when you can. 

Thinking about you.
Best hopes,

KatieB

 

Isunique and Mally like this

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Thanks everyone. This time around has hit me especially hard. I am not doing well emotionally at all. Katie, I will know more on May 22nd when I see the surgeon. 

KatieB likes this

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Sarah,

A recurrence hits hard; your's is particularly disconcerting. 

I didn't have 8 years of NED but perhaps 8 months of NED for each of my 3 recurrences. So, I can't begin to tell you I understand. You were able to buy life insurance and no longer qualified for a pre-existing condition!

A simple blood test and back in the stew!  I've been thinking of your situation because I have a scheduled CT and oncology consult in June. My oncologist is near retired and I can't imagine auditioning a new one. 

I wish I had a magic wand!

Stay the course. 

Tom

Isunique, Mally and KatieB like this

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HI I'm Myra,

Thank you for this site.   I had a nodule removed from my right upper lobe  about 1 year and a few months ago.   Onc said 95% chance no reoccurrence.  Now they found another spiculated mass there.  I don't have the measurements of the mass at my finger tips.   The surgeon said I am not a candidate for surgery.   I have another scan at the end of the month to see if any changes.

I was a wreck when I heard this news.  Now I feel good physically and am not looking forward to going into proceedures and treatments that make you feel sick.   

Sarah  all the best to you!   I just have a feeling that something will come through for you,  Blessings  

Thanks again for this site.  M

Tom Galli, KatieB and Mally like this

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Sarah,

 

I had a recurrence after eleven years just three years ago. I just shook it off and continued my usual life...

 

Yeah, right. I curled up in a ball and cried for a week straight. Then, I found out not only was there a tumor behind my clavicle, but that it had a friend in my brain. Ugh. I am STILL fighting depression/anxiety over this new detour. I can function, I am taking happy pills to drag myself out of a sobbing mass.

On the bright side, stage IV is immediate approval for Disability, there's just that first six months of no income. I can nap any time I want to, no job to go off to. 

 

I'm in the middle of the mitten and my hospital is affiliated with U of M. I had genetic testing and have the ALK mutation so have been on Xalkori since radiation ended. I am glad my trusted oncologist has this resource and am happy to share that there have been many improvements since my last trip in 2003.

Hang in there, big girls DO cry, but they also take care of business and get extra help when needed. Better Living through chemistry.

Good luck,

Becky 

KatieB, Tom Galli, Mally and 1 other like this

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Thanks guys. I decided today that I have cancer, it doesn't have me. This might sound corny, but each time that I was told I had cancer, while a punch in the gut, also was a blessing in disguise. I have been dx with cancer 3 times in the last 25 years. Each time it was  a fluke.

1. 1992,  I had 1 gall bladder attack. 2 weeks later I am in surgery for the removal of bad gall bladder. That in itself was unusual, they like you to try to control it with diet first.  Path report came back, cancer. Very rare and not often found out until after death. Back for more surgery, clean up detail and targeting clips put in place. After research my oncologist decides no further treatment is needed. Good until:

2.  2008, routine check up for rx renewal. My PCP did yearly chest x-rays on his patients that smoke(d). A very talented radiologist found a spot in my upper left lung. More tests, cancer. Upper left lung removed April, 2008. No further treatment needed.

3. 2017 PCP ordered a different blood test by mistake, numbers are a bit high. Re-check in 4 months, numbers are higher. CT scans and more bloodwork. Not good, PET scan ordered, cancer. 

With each occurrence there were no symptoms, no indications of anything wrong. I felt very guilty for years, since I have only needed surgery for my cancer's. Hard to explain. This time I was totally floored, Since 2008, I have been very active, trying to be more responsible for my well being. running, watching my diet. I have run over 50 5k's 10 10k's and even 2 1/2 marathon's. Now, I feel guilty because what I am thinking is the impact it will have on my races this year.  I believe I have 3 options, Laser knife, VATS or the removal of the upper right lung. 

I still am very fortunate that it was found early, and I am working for a company that provides company paid health insurance and seems to actually care about my well being. their statement to me was do whatever you need to do for you. 

Thanks again for the encouraging words, they mean a lot to me. I am singing Gloria Gaynor's song n my head.

 

Mally, Susan Cornett, KatieB and 1 other like this

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Sarah, I don't think it's corny at all! I think that is a great mindset! You have been through a lot, but I'm glad you're able to find so many silver linings and that you've found solace in running. Hoping for good news on May 22! Please keep us posted.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

P.S. We'll be your back up singers! 

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Add "Fight Song" to your playlist - it is good.  I'm happy to see that you can find a silver lining everywhere.  That's been my mindset - find something good about each day, even the icky parts like scans and chemo.  I met a lady last year at an American Cancer Society function who told me "I have cancer, it DOES NOT have me."  I think that is an awesome mantra for all of us.  

Keep us posted on your progress!  

KatieB, Mally, Tom Galli and 1 other like this

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Sorry that it has taken me so long to get back with you, but the emotions and trying to get everything in order has been rough. I will be heading to surgery on June 20th. They are hoping to be able to do the VATS procedure, but if they can't .it will be the regular surgery. Hopefully, they can do a wedge resection, rather than have to remove the upper right lobe. I already told the surgeon, that whatever he does I will be doing the Detroit International 1/2marathon even if I have to walk the whole darn thing. Thanks for all the good wishes and thoughts.

 

Susan Cornett likes this

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Sarah,

You've been down this trail once before. The only good thing about taking another hike is you'll know what to expect.

Stay the course.

Tom

Mally likes this

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Thinking of you today, hope all goes well/went well. I look forward to seeing a "selfie" of you finishing the 1/2 marathon!

LaurenH likes this

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