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My Story up till now...


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My husband and I got married in August 2009. In December I developed a cough. We went on our honeymoon in January and by the time we returned, my cough was still persistent and I had swelling in my abdomen. I scheduled an appointment with my primary.

They performed a chest x-ray, couldn't really see anything, prescribed me with Prilosec and said that my abdomen was possibly swollen from a pulled muscle from exercising. The doctor called me the next day to say she took a closer look at my x-ray and could see a little bit of pneumonia-antibiotics given and f/u appointment scheduled for the next week.

The "pneumonia" was worse, at my follow-up, different antibiotics and breathing treatments prescribed. Next chest x-ray showed improvement-everyone assumed that was the end of it.

At the end of February 2010, I went back in the doctor concerning something else. I mentioned at that time that I was still coughing quite a bit since my pneumonia, she said that is normal, it can continue up to 6 months.

On April 25, 2010, the coughing was so bad, I called again and they had me come in. Chest x-ray had her concerned, sent for a CT scan. This began the numerous quizzical looks, followed by questions of if I smoked and repeated statements of "well, you are healthy, young and never smoked, hmmmm." The results came back abnormal and I was referred to a pulmonologist.

We met with the pulmonologist on April 29, 2010 and he showed us the 4 cm mass on my right lung. I was 30 years old and had been very healthy up to this point. I naively asked what he thought it could be. The doctor said "we assume it is cancer until we prove otherwise."

He scheduled me for a CT guided biopsy the next week. The results came back negative for everything, including cancer. I was then scheduled for a bronchospy May 15-all the results again came back negative for everything tested.

My pulmonologist continued to prescribe high dose cough medicine as well as anything else he could think of to try and get rid of this unknown mass. He referred me to a rheumatologist, thinking I might have an immune deficiency disease. After more bloodwork, CT scans, and doctors visits, all was still inconclusive.

On July 21, 2010, we met with a cardio thoracic surgeon who scheduled me for a lower right thoracotomy and lobectomy on Friday July 23. He said what most everyone else said- "You're so young and healthy, I'd be surprised if it was cancer." When I woke from my surgery, my husband had the unpleasant task of telling me that I did in fact have cancer, NCSLC-Adenocarcinoma. I had never even had stitches before this surgery, let alone chest tubes!

After being in the hospital for a week, as we were discharging to go home, we got the results that it was Stage IV NSCLC. The doctor just kept saying, this is really bad, I'm so sorry.

Since then, I started a clinical trial with Tarceva and Avastin on September 1, 2010. All was stable in CT scan up until recently. Because my tumor was removed during surgery, my oncologist basically looks for new growth and measures the pleural fluid that is in the space where my lung was. We received the results of my last CT on April 20, 2011, after the previous one showed fluid around my heart. There is more fluid, I have a pericardial effusion. There also appears to be more fluid on my lungs as well as possible new nodules-all under 3 mm, so said a PET would not help to determine. The plan is for me to have a pericardial window done in a few weeks, then begin Carboplatin and Taxol.

I am very lucky to have a wonderful, supportive husband, as well as family and friends to make this disease more bearable. I have been reading on the forums since my diagnosis and finally got the courage to put my story out here! Thanks for "listening."

Sara in Kansas

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Sara,

I am so sorry about the circumstances that led you here but know how comforting the posts can be. Like you I spent time reading before I worked up the nerve to post. As you probably have noticed the people here are very knowledgeable, friendly and always ready to lend a supporting virtual shoulder. It often makes things bearable knowing that many here have at least some knowledge of what you are feeling.

Since you have been reading for a while I hope you have also found cancergrace.org - that is an excellent resource to have since you can ask and get response to questions from people who have been in the same situation and oncologists. I have been so surprised by the wealth of information here and there.

I know it is a holiday weekend and some may not check in as frequently as during the week - but I wanted to welcome you. Check out the Just For Fun Forum - someone (anyone) starts a daily "Air" and we generally have a good rolling dialogue among members - we try and keep that one light but as you well know it's not easy - especially when you have been here a while and members seem like family.

If I can be of any support feel free to drop me a message - I don't wander far and check the forum here often. I hope that you have a wonderful holiday weekend and look forward to seeing you around the board.

Annette

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Welcome, Sara, but sorry you need to be here. Annette is right; there are lots of great people here, with a wide range of experiences. I'll look forward to hearing more from you.

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Hi Sara,

Glad to see you found us. I too, lurked for a while to make sure I felt safe here. Thanks for sharing your profound story.

Lung cancer does not discriminate. It affects the young, the not so young, the ones who never smoked, and those that did. It's time to educate the world on this, and get the research dollars we need to find a way to prevent or cure this disease!

I had the carbo/taxol cocktail that you are going to have. I found staying very positive helped a lot. Your hair may not fall out, but if you see it is.....well....all I can is I wanted to be in control, not my disease, so as soon as it started, I shaved my head. I found the cutest (but cheap) hats at the American Cancer Society's Tender Loving Care site which is here: http://www.tlcdirect.org

Sounds like you have a good support system, and that will be so helpful. Like Annette said, it is a holiday weekend, so folks may not respond, but add to this post on Monday and lots of folks will respond for sure.

Also, like Annette said, we have our Daily Air postings in Just For Fun Off Topics. There's a bunch of us regulars in there, and we do have a lot of fun! Feel free to join us there!

Take care, have a blessed Easter,

I call myself Judy in MI (Michigan) because we have another friend in here named Judy, but she is Judy in KW (Key West).

I'm very jealous of where she lives! JK

Judy in MI

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Hi Sara and wecome to the best site on the web for LC fighters/ a caregiver not a survivor, but I can assure you that the people here are absolutely supportive and I am glad that you got up the courage to tell your story. I know there are many people here who can support you as you go through this fight. It's great that you have a strong support system at home, too. I gather you are a Royals fan: baseball is my favourite sport (being from the Toronto area I have to cheer for the Blue Jays!). In your honour I will make the Royals my second-favorite team for the year.

Glad you have a plan in place to fight this beast, and wishing you the best. Will watch for your future posts, and do keep posting and checking on this site and on cancergrace.org which are the best sites on the net that I have found for helpful advice and neverending support.

Regards from Toronto,

Jane

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Sara - welcome to the site. I am also sorry that you had to go through so much to get diagnosed, unfortunately with this disease it isn't that unusual, especially for younger people who never smoked. As Judy MI said -

Lung cancer does not discriminate. It affects the young, the not so young, the ones who never smoked, and those that did. It's time to educate the world on this, and get the research dollars we need to find a way to prevent or cure this disease!

I also had the carbo/taxol combo and found it not to be too difficult. I hope you breeze through the treatment and it kicks the cancer's *ss!

Please keep us posted on how you are doing.

Diane

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Sara, it is so frustrating to read your story and hear all the things you did right to try to find out what was going on with you. It's hard to believe in this day and age that cancer is still sometimes so difficult to find. I am older but like you was very healthy. Got yearly physicals including full lab work ups and chest x-rays. Still, they did not find my cancer until I got pneumonia and had a pleural effusion. It's very disconcerting, I know, to hear people talk about early detection. Great if they can find what you've got.

Stay on board here. You won't be sorry. It's a great supportive community.

Judy in KW

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  • 2 weeks later...

Oh, Sara, thank you for sharing your story. I'm wishing you all the best with your surgery!

My dad (Brian) is much older than you are, but in his case too, the fact that he had never smoked probably delayed his diagnosis for up to a year, perhaps even longer. By the time cancer was actually considered, his disease was also Stage IV. It is truly heartbreaking that early detection of lung cancer is so rare. Hopefully, this will change as more people like yourself are brave enough to tell their story and raise awareness. Good for you!

All of us on this forum are pulling for you, Sara!

Sarah

Venice, California

p.s. I wholeheartedly second the recommendation to check out CancerGrace.org. What an incredible resource for all of us in the fight!

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Good Morning Sara,

Welcome to LCSC,sorry for being a wee bitty late on arrival,well actually,having read the supporting voices of my many friends here to your post,the quality of their responses to you,I found it difficult to offer you anything more than what has been said.The buddies here are quite a bunch,knowledgeable,supportive not forgetting great fun,being here I am sure you will find your load being lightened somewhat.I look forward to getting to know you.

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  • 2 weeks later...

Sara your story is so sad and so frustrating. It is so hard to believe that in this day and age Lung Cancer is seldom detected until in the later stages. I was a caregiver not a patient but I found this wonderful place and now the people here are like another family to me and so many others.

So I will say welcome to the family and like so many others I wish you never had reason to be here. Also the same goes to the other Sarah. Please keep us up to date on what is happening with you and do go to find the just for fun forum.

Sara I know that you already have and that is great so am hoping that Sarah will join us there too.

Just remember what Judy said. One of the most important tools in fighting lung cancer is HOPE. I saw first hand what hope could do and what taking it away could do. There are so many here who have had stage 4 and are still here. Many still fighting and others who are stable or show NED. God bless.

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Hi sara and welcome. I'm new here too. Like you I was waiting for answers far too long. seems lung cancer symptoms show up after it has had a chance to develop. I wish you all the best. I see you love your Royals too. Pretty cool to be able to throw out a 1st pitch. Your youth and fitness will help you get through this. God be with you. Alan

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  • 4 weeks later...

Well, my nausea continued so much the last few days they had me come in for fluids, thinking maybe I was dehydrated. After over 2 liters of fluids and some steroids, nothing was helping. They sent me to go get a brain MRI and we already got the preliminary results back that there are several tumors in my brain now. So I go in first thing tomorrow morning to meet with the radiation oncologist. They said I mist start the radiation tomorrow then. My Oncologist said it might be a couple weeks of M-F everyday treatment and I will not have my chemo during that time. We certainly were not prepared for this so, very, over overwhelmed. Will post more once we know what this will look like.

Sara

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Well this is not what we wanted to hear that's for sure. But take heart - I think there are members here that have successfully had WBR. Hopefully the results start taking effect sooner rather than later. Please let us know how things are going - and know that my prayers and thoughts are with you and your family.

Annette

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I did definitely NOT want to here this, but it would seem that many on this site have received significant benifit from WRB. and with your attitude I am confident that you will overcome this as well. Wishing you the best and thinking of you daily.

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Hi Sara,

I am so sorry to hear your news,my thoughts and prayers are with you and your family as you proceed through your treatment over the next two weeks.Best Wishes.

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