Two weeks ago I was diagnosed with non small cell lung cancer. I have an appointment with md Anderson in 4 weeks which seems like eternity. I ended up at md Anderson emergency room due to some blood clots. They ran a ct with contrast & this is what report says Bilateral segmental/subsegmental pulmonary emboli as described above, with evidence of mild right heart strain.
Stable right perihilar soft tissue thickening extending along the bronchovascular bundles in the right middle and lower lobes. Diffuse bronchial wall thickening and mild bilateral septal thickening. The findings are suspicious for malignancy with lymphangitic spread. Numerous small bilateral lung nodules are suspicious for metastases.
Stable focal consolidative opacity in the right lower lobe. Right upper lobe paramediastinal nodular opacity has increased, infectious/inflammatory or malignant.
4 weeks seems so far. Does this mean it’s growing? Fear is taking over. Thanks in advance for all replies!
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Bahan
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i am so sorry for the anxiety in the long wait. Getting into MDA takes time, but for people like me who travel for care (my second opinion), I cannot recommend them highly enough for how they got everything done in the short time I was in town for diagnosis confirmation, scans, etc.
Have you had a biopsy yet? It sounds like you haven’t, and once you have a biopsy you will have more waiting for comprehensive biomarker testing to determine which treatments YOUR cancer will most likely respond to. It is extremely important to have all the information in hand for your doctors to make the very best first plan. “Waiting” is such a difficult part. I know I felt like I could handle whatever I needed to do once I just KNEW what would be next.
Plan some good distractions between now and the appointment if you can. Try not to lie awake at night worrying (I am terrible about this!) Put on movies until you fall asleep on a couch, or listen to an audio book or meditation app. At nine years with stage IV Nonsmall cell lung cancer, I am living well and off treatments. There is hope.
Best wishes, and keep asking questions here and we will help as we can
Thank you so much. My first biopsy was a lung lavage in Dallas’s, Tx. They were not able to get enough cells so I am going to have to have another biopsy. They got enough to know it was a non small cell cancer. 4 weeks until I see my md Anderson oncologist. Like you said the waiting is agonizing. Once I know how to fight this I will be ready to try and beat it! Than you for encouragement!
Sending support, Bahan! I agree with Jennifer on how difficult the waiting is and once you get a plan.... I am still in the scan/rescan for lung cancer process with suspected adenocarcinoma - next scan in just about a week. I understand the waiting and plan aspects from another preinvasive cancer I had 4 years ago. Sending healing energy your way.....
See your GP and get some Xanex or another anti-anxiety drug and/or sleep aid so you don't wear yourself out being nervous and sleepless. You need your strength and your wits about you so be kind to yourself. There is also an online support group based in the US called 'Inspire' . You will find a lot of experienced and supportive folks there as well. Sending good vibes your way and hugs as well.
Thank you! I see my GP Wednesday and anxiety is over the top! I can’t look at this in a positive way. Seems I only see negative right now. Thank you so much for your response!
your mind will be racing and your fingers seeking out google answers - pause, take a breath ..... these letters are written in clinical terms for medics so googling the terms can cause even more anxiety. it's natural to be fearful but often we increase our worry by reading stuff on the internet we don't understand or base our fears on experiences of people we may have known who were diagnosed or treated years ago.
Things have changed beyond recognition since my diagnosis in January 2011 - every treatment mode has changed, and many more treatments exist - extending life and changing the treatments for many to be more targeted/precise to work with the patient's own system. That's why it's so important to get a biopsy to determine the tumour's characteristics to decide the most appropriate treatment. It's natural to want to know more but do use trusted websites which even then, aren't always updated frequently enough to take account of the newer treatments and interventions.
We imagine whatever it is, it must be growing every second. Mine was removed in Dec 2010 and was a 7cm tumour (x 2.1cm x 1.9cm) described as being like an egg at the top of my lung. I did not have a biopsy - but it showed clearly on chest x-ray (15/10/10, CT scan and PET scan) so was removed surgically with half my left lung. I finally had results on 13/1/11 after resected lung had been sent to pathology and told it had been mucinous adenocarcinoma. It took me googling to find out the specific type I had that the surgeon had said was rare but increasing in younger female never smokers like me - to ask if I was EGFR mutated - but the sample wasn't. At that time the only targeted treatments were for that mutation and then only available on clinical trials so they didn't apply to me. I was told chemotherapy didn't work for the rare type I had so I wasn't offered it just told to go and get on with life. I was back at work and swimming by April 2011 and have been active, working, travelling and swimming since. I was told it was likely it had taken a long time for my tumour to develop which I found reassuring as like you I'd imagined every minute, day, week was counting against me. Some of the words in your report describe how they see the lungs (opacities/ground glass opacities) and are often present and respond/increase with inflammation/infection hence their comments - many are not malignant.
As others have suggested, find a way to distract yourself if you can - over the years I've had many waiting periods for investigations - imaging and bronchoscopies etc which mean you need a way of coping. We all approach these differently but for me, keeping busy, physically and mentally reduces the space/time for negative doubts/worries to creep in.... good luck. roycastle.org/about-lung-ca...
Thank you so much! I am going to do my best to stay off Google period. Guess what is tearing me up is I was kept in hospital a week every month doing every scan & bloodwork in the book, I had lung lavash I had water drained off my heart & lungs all teste’s test. This went on for 5 months in woodlands Tx. My husband knew a doctor in Dallas. Went up there did a lung lavash found the cancer. I feel like so much wasted time as I was so sick for the 5 moths with water on my heart and lungs. Caused horrible chest pains. Lots of wasted time.
I empathise. I was hospitalised in October for almost 3 weeks and had no end of needless medication as once again they suspected asthma or COPD. I've had 3 sets of tests at 3 different hospitals over 8 years and all confirmed I do not have asthma so it's incredibly wearing when in hospitals at weekends and non respiratory/lung doctors who know little about my history seem to think they know better and prescribe meds that cause more problems.
I've only just had results for tests done in November and January (UK NHS is in a state) and it appears I now have a hiatus hernia and apnoea so it's no wonder asthma medication doesn't work. I think they read 'lung cancer history' noted only file and assume I must have been a smoker which I've never been or were judging me on the typical patient they see via A&E.
It's good you managed to see a different doctor - we have to advocate for ourselves sadly. hope you get some more answers before too long. not much point worrying about what's been and done, nor imagining 'what if' but better to find a way to distract, cope with then face the 'what is'..... thinking of you.
A year into my cancer journey I experienced water on my heart and lungs and needed surgery to relieve them. It is painful and I'm sorry you had to experience this. Mine was not related to the cancer but fluid in the pleura sometimes is. I have ground glass nodules that have been unchanged in 13.5 years
Addressing those blood clots is most important right now as one can break loose and go to the heart or brain.
I don't know how small of a sample they can use to test for a biomarker, I do know that the sample need not be as large as it once did. As someone mentioned, knowing the biomarker can make a difference between having chemo or talking a daily pill. It can take 3-4 weeks for all of that testing to be complete.
This prevents them from giving you a treatment that won't work on your kind of cancer and causing unnecessary side effects. In 2010 when I was diagnosed it still took a good 4 weeks to get all testing done and chemo started.
Thank you so much for the information. I am ready for the appointment to get here so I know how to fight. I will let you know my outcome. Information from people has been invaluable!
bio marker testing can also be done via a special blood test through an organization called the Foundation (“liquid biopsy”).
Blood can be drawn at your home. No hospitsl stay. Results are nearly as thorough as tissue biopsy and are a bit faster. Same organization does both analysis. My husband had both when there were issues with the timing. (You may pay out of pocket if you have both, insurance will likely cover only one test per diagnosis. )
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