Small cell Pet/CT

Hi, I am looking for advice. In Dec 2014 I felt so tired I went to my gp. I discovered that I had lost weight. In fact I had lost muscle and gained some fat. I did a bit of research and found that small cell lung cancer can have some strange symptoms. My fatigue continued and in Oct 2016 I managed to get a PET/CT. This scan never picked anything up that worried my doctor. The question is, do now forget about lung cancer or should I still pursue further tests, maybe another scan in 6 months? I still feel exhausted and the loss of muscle means what muscle I have is always a bit sore as if I have worked out too much in the gym. Thank you for any help. Steve.

22 Replies

oldestnewest
  • I dont think you lost muscle WHEN you go gym muscle grows in waves.

    If you been using protein shakes that can cause gut issues and fat disbursal.

    After doing some reading i was surprised to read that some these protein shakes can actually feed cancers BIT like iron dose with infections.

    If your still going gym the say 25 mins various excersise and not going mad AS over 25 mins ya start burning into muscle.

    Hope ya start feeling better and everything in moderation.

  • Hi and thank you for replying. The trouble is that I am not going to the gym. The muscle pain feels like I have worked out when I haven't done anything? Also, muscle loss is evident from observation and loosed fitting clothes.

  • If you not going gym muscle will vanish ITs one of them use it or lose it things.

    After 12 hours of bed rest for example in hospital THEY do like to get you moving about MUSCLE decomposing or what ever releases toxins in blood stream.

    healthline.com/symptom/musc...

    ncbi.nlm.nih.gov/pmc/articl...

  • You might want to request that your thyroid be evaluated. Without treatment a small cell lung cancer would have ended your life within a couple of months of when this first started. A cancer large enough to cause symptoms would show up on the PET/CT.

    ......"The question is, do now forget about lung cancer or should I still pursue further tests, maybe another scan in 6 months?" .......

    If you do not have any of the risk factors that make a low doseCT necessary on an annual basis why expose yourself unneccesarily to repeated high doses of radiation? What was your drs recommendation?

  • Thank you Denzie, I did get my thyroid tested and it was fine. My doctors recommendation was to try and live with the fatigue, so maybe that's what I need to do?

  • No do not give in. At this point I would want a referral to an endocrinologist to examine more than just the thyroid. Consider adding seeing a palliative care physician, they have extra education in dealing with this type of complaint.

    Additionally, find an MD who is also a licensed ND (naturopathic doctor).

    Have you ever had a cancer diagnosis or are you here because you need help finding a diagnosis? 'Dr Google' can lead you down many false paths. For that reason I recommend an MD/NP.or a palliative care dr.

  • Thank you Denzie, I have had no diagnosis and am trying to avoid Dr Google. The question of malignancy was raised by my doctor who ordered the PET/CT to rule anything in or out. When the PET/CT was ordered I did look on-line and some of the stuff seemed to resonate with me. Thanks for all your guidance, I appreciate it.

  • Have any of your medications changed? At one point a doctor tried me on lyrica. I couldn't hold my eyes open with taking it. I immediately took myself off of it. Sometimes you need to eat more energy food.

  • Hi Mfrancis, no medications changed, and when it started I wasn't on any meds. I keep looking at diet and making changes here and there. I did see a dietician to help me along the way. Thanks for responding.

  • When my PET/CT scams showed nothing,I went to a surgeon who admitted he didn't know what it was but it need to come out. In February I had robotic surgery and it was cancer.I'm glad I insisted because I didn't have to have chemo or radiation. So far so good. Hope you feel better.

  • Hi MIHbady, how did they know what to take out if nothing was showing on PET/CT? Maybe there is another test I should be looking at?

  • I had a scan on my throat and they found the spot on my lung.I knew it was cancer when all the tests said no. Cancer runs in my family.

  • MIHbady, it runs in mine too, I just wish we were further along the road in eradicating it. Best wishes to you. Steve.

  • Same to you.

  • My doctor that treated my copd and emp. Told me i was doing fine and come back in six months. I then went to a neurologist due to my left arm was hurting and had a large amount of muscle loss. He sent me for catscan of my neck,he called me back the same day of the test and said he couldn't do surgery, i asked why he stated i had a tumor in my left lung. I was later diagnosed with stage iv lung cancer, i am starting my second round of chemo. Hope this helped.

  • Thank you for sharing Collinjo.I hope your treatment goes well, keep going. Steve.

  • Steve,

    I was recently diagnossed with small cell and it was completely out of left field. Although I had smoked for years I hadn't had any bad symptoms other than the ones all smokers have. However I had been having digestive problems for a year and had multiple ct scans with chalk and also with dye and had bloodwork done 3 or 4 times . Also had a colonoscopy. Everything was close to normal, my general practice doc even said to me" I think at this time we have ruled out cancer". 1 month after him saying that I was having chest pain and went to Er thankfully a very observant er doc noticed something odd with lung, ordered an MRI and found a 4cm mass that turned out to be sslc. Come to find out all the others were not high up enough on my chest to see it. Now I think my problems were just pressure and discomfort from that. So I wouldn't recommend giving up just because one test or one doc thinks all is well. If you think something's wrong I would definitely keep investigating. If it turns out you did investigating for nothing well that's good news too, no harm.

    Best of luck,

    RW

  • RW, thank you for taking the time to give me all this information, it is really useful. Do you mind me asking your age, you don't need to answer. I am in my early fifties and although I smoked, my GP said I was still at the young end of the spectrum. I kind of disagreed with him as i have seen people younger than me have to fight lung cancer. All I can say is I hope you have a good response to treatment and you will be in my prayers. You sound like you have the right attitude to deal with this.

  • Steve ,

    I am 41 years old I think that's another reason they kind of dismissed cancer too quickly.

    Thanks, I hope you find an explination that is easily fixed.

    RW

  • Thanks Steve, it does seem like age plays a part in how suspicious your doc is regarding cancer. I was shown statistics that showed in Wales 19 people under age of 55 were diagnosed with small cell in a year out of a population of 3 million. If you are 1 of the 19 then the stats are meaningless and if anything, can hinder your chance of an early diagnosis. I send my best wishes to you. Steve

  • Doctors use due diligence scans blood test ITs mostly none smokers that are ones usually slip threw net with early DX

    Not that smokers get away with out really BUT nearest you will get to home test is if you went out and bought a pregnancy test BUT that only picks up bladder testicular cancers in guys.

  • My PCP told me it was my posture. I knew something was wrong. Get to an oncologist and stop wasting precious time

You may also like...