Herman Posted September 20, 2004 Share Posted September 20, 2004 I wrote some time ago regarding my father who had just been diagnosed with lung cancer after undergoing a cat scan. The problem now is that there does not seem to be any way to confirm the diagnosis of cancer, and no one will treat him for cancer without a definative diagnosis of cancer. The mass is behind the right lung, and they do not know if it is pushing out of the lung into the lymph nodes or a tumor on the lymph node itself pushing into the lung. 4 radiologists were contacted and all 4 said they could not due a needle biopsy due to it's location. Too many large blood vessels in the way. A bronchoscopy was done with a "Wang Needle Procedure", but the results were inconclusive. Cells from the biopsy were normal, but cells from a saline wash of the mass showed to be "suggestive" of squamos cell carcinoma. He was then sent to a very well known surgeon in our area to discuss a "scope" procedure, but he also said that due to the location of the mass, he was unable to get to it. We were told the only way to get a biopsy was to do open chest surgery. As my father is oxygen 24/7, the surgeon said it was too risky a procedure for him, as he may not ever come off the ventalator after surgery. So, now after two months (this all started on July 16th), we are no closer to getting the answers we need. The pulmonologist basically said there is no more she can do for him, and is sending him to an oncologist next week for another opinion, and maybe the oncologist will want to do a CAT or PET scan. My parents have an HMO, and do not have the financial means to go out on their own. There is the MAYO clinic about two hours from where we live where I would like to take my father there for another opinion, but they do not accept HMO's (obviously). Has anyone ever had this happen, that a confirmed diagnosis could not be made? And if you have gone through it, what if any treatment was done? I am so scared we are running out of options. I can understand that if it isn't cancer, the treatments would do him more harm than good. But on the other hand, what if it is cancer, and nothing is done about it? I feel like they couln't just sit back and do nothing, but apparently, that is what will happen if a confirmed diagnosis is not made. My father had another CAT scan Friday to see if it has grown. At last scan, the mass was 5cm x 4cm. The pulmonologist said that when she did the broncoscopy, the tissue on the outside of the mass looked normal, and that she does not think the cancer has spread. I would hope and pray for that to be the case, but it seems to confuse the diagnosis. Does anyone know of where I can turn to help my father? This is really wearing on us all - ecspecially my father. Any thoughts would be appreciated! Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 20, 2004 Share Posted September 20, 2004 Is the tumor in the center? There are doctors, actually GI doctors who are trained to do endoscopy and biopsy through the esophagus or stomach wall using ultrasound. It is a lot less invasive than having a thorocotomy , only an out patient procedure usually. They can get at the lymph nodes, and adrenal glands also. Donna G Here is the post I made a while back http://lchelp.com/community/viewtopic.p ... ultrasound Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 20, 2004 Share Posted September 20, 2004 Donna is right on the money, the procedure she is referring to is endoscopic ultrasound and it is great for not only accurately imaging the center of the chest but also for getting biopsies. It is amazing (I've sometimes thought scary) the places they are willing and able to stick a biopsy needle with this procedure. It is safe and easier than a bronchoscopy. The problem is that there are very few doctors who do it, there are only 2 GI specialists in the Minneapolis/St. Paul area who do this procedure so you might have to hunt around. If that is not an option and the PET scan is strongly suggestive of malignancy, then sometimes a decision has to be made about treating without a diagnosis. I have done this (with radiation only, not chemo) but am very very reluctant to because of the chance that it is something else. A colleague once treated a patient with chemotherapy for what looked on CT scan to be undoubtedly a recurrence of a known lymphoma deep in the abdomen. Chemo was started and the patient died 2 weeks later of an overwhelming infection. The mass turned out to be an abscess. I once sent a patient for surgery to remove 2 lobes of the lung after a biopsy was "suggestive" of squamous cell cancer. Lit up on PET scan. Turned out to be TB. Still waiting to here from the lawyers over that one..... Quote Link to comment Share on other sites More sharing options...
Herman Posted September 21, 2004 Author Share Posted September 21, 2004 I want to thank you so much Donna for this VERY valuable information! I printed out a copy of the web site link and gave it to my parents to take to the oncologist next week. I am just suprised that not one of my father's doctors has mentioned this, even if it meant going to another city, such as Phoenix, to get it done. As for the location of the mass, it is in the right upper center of his chest, in back of the lung pressing ever so slightly on the trachea. Also, thank you so much to "oncodoc" for your input. I found that to be very "uplifting"! I understand the implications of treating someone for cancer that does not have it, but the other alternatives are also just as scary. I found one thing interesting that you said regarding TB. My father has never been tested for TB, but he has been tested for Valley Fever (a disease indicitive to the Southwest that comes from mold spores in the dust which can cause lung problems, and even masses) but that test was negative. Not one of his doc's even mentioned testing him for TB. I will have to bring that up with the oncologist as well. If we can't find anyone in our area that does the procedure you are referring to, I am hoping maybe the Mayo Clinic in Scottsdale will be able to. My parents and I have decided that if we do not get anywhere with the oncologist next week, we are going to try the Mayo Clinic. It will be expensive as their insurance will not cover it, but my fathers life is priceless, and worth so much more than money will ever be! I can't thank you both enough for this very important information - at least now I have hope that there is maybe something else that can be done! I will keep you updated on what happens! Thank you again! Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 21, 2004 Share Posted September 21, 2004 Best wishes, please let us know how things are going. Donna G They do have it in Mayo in Fla. http://www.mayoclinic.org/endoscopicultrasound-jax/ Quote Link to comment Share on other sites More sharing options...
ljdub Posted September 26, 2004 Share Posted September 26, 2004 Hi Herman, I don't post often but mostly just lurk and read, but when I saw your parents were considering Mayo in Scottsdale, I just had to respond that I think it was the best decision I ever made to go there for my cancer treatment. I see Doc Hogan there, and think he is wonderful. I have been so impressed with the whole way of operating there; I can't say enough good things about them. They have been available 24/7 for any questions or concerns I have had, and I live 2 hours the other direction from the Clinic (Prescott). Dr. Hogan is my oncologist and Dr. Vora my radiation oncologist - they are both terrific. I will keep your whole family in my prayers as you go on this journey together. Quote Link to comment Share on other sites More sharing options...
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