z Posted August 7, 2005 Share Posted August 7, 2005 Hi everyone, I am just about to be diagnosed with squamous cell lung cancer... so will be needing some help:) In 1998 I had cervical cancer, treated with a couple of surgeries and I seemed to be doing very well since. Atthat time I was 38, and now I am 44 years old. This last June my gynecological oncologist included a lung scan in my annual CT scan. Well, a 2 by 2.2 cm mass showed on my lung, and it was confirmed by a pet scan as well. I underwent two bronchoscopies, both of which were negative cause they did not seem able to reach the mass. Finally, last week I had a ultra sound guided bronchoscopy, with a needle biopsy (done only in a few hospitals in the US, but reportedly a standard practice in Europe). The next day the pulmonologist called to tell me that the pathologist had called him to say that at first look the biopsied cells looked like squamous cell carcinoma. The full report is yet to come, Monday or Tuesday. I have no symptoms (well, had none before all of these bronchoscopies) and look and feel perfectly healthy. I smoked since I was a teenager, but stopped at the end of 1997 and have not even wanted a cigarette since then. This is now a new turn in my life, of course. And I thought I was getting ahead... This caught me between two jobs, where I am paying for Cobra insurance on my own, while still on 3 months probation at my new job (1 month left), and not yet on their insurance. Not sure the new job will be so keen to have me take time off for treatments either. I am really apprehensive of yet another surgery and yet another part of my body being gone, and the thought of chemotherapy scares the heck out of me. So, I have been investigating what other therapies exist. Here comes my question - well, three questions: 1. Does anyone have any experience with Photodynarnic Therapy? 2. Any integrative medicine recommendations? 3. Is there anyone who has tried alternative treatments and can share experiences with me? Thanks, Z Quote Link to comment Share on other sites More sharing options...
Patkid Posted August 7, 2005 Share Posted August 7, 2005 We have no information on your topics to share, but we want to welcome you and add you to our prayer concerns. pat and brian Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 7, 2005 Share Posted August 7, 2005 Welcome and sorry you have the need to find us. In answer to your questions. 1. What is Photodynaric Thyerapy? I for one have never heard this for Lung Cancer! 2. Go check out our Alternaive Fourm 3. I don't know of anyone who has done Alternative treatments alone for lung cancer. If they have, I don't know of anyone who has lived to talk about it. I do know people do them along with Standard treatments, be it chemo and radiation. I would think you would rather do surgery and get it out of you rather then take the chance of playing with Alternative drugs. Surgery isn't fun, but with LUNG CANCER it's a very good thing to do if they catch it early. Do NOT compare Lung Cancer with other cancers. That's not a good idea. This one is not like breast, prostate, etc., where you can play around a little before you deside what you want to do. You need your lungs/lung to breath. You may hear stories of breast cancer patients that have used alternative meds, but that does NOT mean it works for lung cancer patients. It really doesn't work that way. You might want to read stories of other lung cancer survivors and see what has worked for them. We have many stories right here at LCSC in the My Story Forum. Best of luck. Quote Link to comment Share on other sites More sharing options...
z Posted August 7, 2005 Author Share Posted August 7, 2005 Thanks for your replies:) Here is info on Photodynarnic Therapy if you are interested: http://www.uphs.upenn.edu/surgery/fac/dlf.html Z Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 7, 2005 Share Posted August 7, 2005 Hi z, I appreciate your questions. I really do. There is no doubt in my mind that the treatments used to treat lc are harsh. I don't know what is worse, my radiation and chemo or my oldest brother's driving! lol!(you would have road rage if he were in front of you!) Anyway. All I can tell you about treatments are based on my experience. It wasn't easy by any means, but doable. It seems you have alot going for you. You are young and you sound healthy other than having had cervical cancer (congrats on getting that taken care of). It is not surprising to hear you wanting to spare your parts doing some green leaves and fresh air treatments. If I could have done that, I would have too. Also, it will be interesting to hear what your doc says re: the pathology. As far as I know, and you can ask anyone here, if you are eligible to have your lobe or lung removed, go for it! And the sooner the better. Glad you are asking questions. That is one way of getting answers. Very good luck to you. Try to take it one step at a time. Remember, money is nothing... (it helps) but, I swear, somehow it will all work out. Hope to see you back again! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 7, 2005 Share Posted August 7, 2005 I see nothing about lung cancer in all this information. Am I missing something? I don't always see all there is to see! Hugs, Connie Administrative Office: 3400 Spruce Street 4 Silverstein Pavilion Philadelphia, PA 19104 Executive Assistant: Carla Tolino-Panaccio Administrative Telephone: 215-662-7866 Administrative Fax: 215-662-3629 Patient Appointments: 215-662-2050 Clinical Offices: 3400 Spruce Street 4 Silverstein Pavilion Philadelphia, PA 19104-4227 Clinical Telephone: 215-662-7866 Clinical Fax: 215-662-3629 Patient Appointments: 215-662-2050 Contact Information (internal use only) frakerd@uphs.upenn.edu Dr. Douglas Fraker is Chief of the Division of Endocrine and Oncologic Surgery as well as a surgical oncologist and an endocrine surgeon, who was formally a senior investigator at the National Cancer Institute. Dr. Fraker’s research efforts have focused on regional perfusion to treat melanoma and soft tissue sarcomas of the extremities and metatastic tumors of the liver. His clinical practice deals primarily with surgical oncology (including melanoma, sarcoma, liver tumors and breast cancer) and endocrine surgery of the thyroid, parathyroid, adrenal and pancreas. Clinical research protocols include isolated limb perfusion for melanoma and sarcoma, intra arterial chemotherapy for liver tumors, photodynamic therapy for intra peritoneal disease, and lymph node mapping for melanoma and breast cancer. Research interests include mechanism of action of tumor necrosis factor, treatment strategy targeting tumor angiogenesis, regional gene therapy, and photodynamic therapy. Special Interests: Treatment of primary and metastatic liver tumors by resection, radiofrequency thermal ablation, intra-arterial pump for chemotherapy; treatment of breast cancer with skin- sparing mastectomy and sentinel lymph node mapping; treatment of melanoma with sentinel lymph node mapping and biopsy, and isolated limb perfusion; gastrointestinal cancers of the esophagus, stomach, colon and rectum; thyroid cancer; parathyroid disease; pancreatic islet cell tumors; carcinoid; adrenal tumors including laparoscopic adrenalectomy; gastrointestinal sarcomas; use of photodynarnic therapy for treatment of intraperitoneal malignancies (carcinomatosis and sarcomatosis, including ovarian cancer). Quote Link to comment Share on other sites More sharing options...
z Posted August 7, 2005 Author Share Posted August 7, 2005 Oops, I sent the wrong link. That was info for the doctor that does this kind of a procedure. Here is info about the procedure: http://www.cancercompass.com/cancer-news/1,552,00.htm Quote Link to comment Share on other sites More sharing options...
z Posted August 7, 2005 Author Share Posted August 7, 2005 Hi Cindi, So sorry to hear about what you have had to go through and you losing both brothers to lung cancer. This whole thing, us knowing so little about this desease, and the barbarity (if you would allow me) of the treatments that are standard today just make no sense to me. I still remember the two surgeries I had in 1998 and 1999 (the second one dealing with scar tissue which had swallowed my colon), and keep feeling there has to be a better way. I am awaiting the full biopsy report and then will consult with all kinds of folks and make some decisions. Will keep you posted. Thanks for your support and best of luck to you too. Z Hi z, I appreciate your questions. I really do. There is no doubt in my mind that the treatments used to treat lc are harsh. I don't know what is worse, my radiation and chemo or my oldest brother's driving! lol!(you would have road rage if he were in front of you!) Anyway. All I can tell you about treatments are based on my experience. It wasn't easy by any means, but doable. It seems you have alot going for you. You are young and you sound healthy other than having had cervical cancer (congrats on getting that taken care of). It is not surprising to hear you wanting to spare your parts doing some green leaves and fresh air treatments. If I could have done that, I would have too. Also, it will be interesting to hear what your doc says re: the pathology. As far as I know, and you can ask anyone here, if you are eligible to have your lobe or lung removed, go for it! And the sooner the better. Glad you are asking questions. That is one way of getting answers. Very good luck to you. Try to take it one step at a time. Remember, money is nothing... (it helps) but, I swear, somehow it will all work out. Hope to see you back again! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don M Posted August 7, 2005 Share Posted August 7, 2005 Hi Z. I don't have any experience regardin your 3 questions, except that I did take supplements,but my cancer came back anyway. It sounds like you have an early stage cancer. I had early stage lung cancer twice and had surgery twice. I don't regret having had the surgery. I do regret not doing adjuvant chemo after the first surgery. I did chemo after the second surgery and it was not bad at all. I took a few days off work after each treatment, but probably could have toughed it out and gone to work if I wanted to. I gather you are somewhat adverse to surgery/chemo, and I just wanted to let you know that it was not too horrible for me. Don M Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted August 7, 2005 Share Posted August 7, 2005 Hi Z...real name?? Chemo effects many people in many differnt ways. I have had six different regimens and had only minor side effects, many others have similar histories. Don't get me wrong, some have terrible times....I just recommend that you do not let horror stories prevent you from getting the treatment that you must have. jim Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 8, 2005 Share Posted August 8, 2005 Dear Z, Just wanted to wish you good luck on your results tomorrow or Tuesday. I hope it's an early stage for you. I am a 10 year survivor of this beast and there are many others just like me. Our very own David P here on LCSC is somewhere around 27 years of being a LC survivor. I want to be just like him one day! I was 43 when I was dx.d' I lost my dad, mom and my sister all to LC. So, sadly enough, I'm no stranger to LC. Good luck on what ever you decide for your treatments. It's not easy, but it's doable. I would like to suggests the VATS procedure if your an early stage. Just mention it to your doctor and see what they think. Lots less cutting and more in the comfort zone. But, for me, I just wanted to live and doing what ever it took was exactly what I did. I'm doing very well today after having surgery, chemo and radiation. My treatments went well. Not a cake walk, but nothing to really cry about either. I'm here and kicking and that works for me! Good luck and best wishes, Connie Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 8, 2005 Share Posted August 8, 2005 Hi Z, Welcome, I can't answer your 3 questions, but my husband just finished up chemo and it was not bad at all. Good luck finding out the results of your test. I pray it is an early stage and is operable. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
bunny Posted August 8, 2005 Share Posted August 8, 2005 hi Z. welcome. the photod. treatment sounds very interesting. my observation (because I am a caregiver, not someone with LC) is that people do well with their own, highly personalized combo of traditional and alternative treatments. at any rate, if you're like my mom, you'll change your mind 100 times about how you want to proceed, before you ultimately decide. we're here for you, with info and support, throughout. xoxo amie Quote Link to comment Share on other sites More sharing options...
jang Posted August 8, 2005 Share Posted August 8, 2005 Hi Z, I just wanted to say to wait for your diagnosis before making any kind of decisions. I had my left upper lobe removed in April 05, no chemo, and I am doing fine. Had it done in Baltimore too. If you would like to email me, please feel free. jangibson99@yahoo.com Quote Link to comment Share on other sites More sharing options...
z Posted August 8, 2005 Author Share Posted August 8, 2005 Thanks. That is interesting. I am trying to find out who/where does this therapy. Z I know someone who had photodynamic therapy in San Diego several years ago for a lesion on her lung. She is disabled and had the surgery at a research facility. She is also a limited English speaker so getting complete information from her is next to impossible. I didn't even know out about this procedure until a long while after my dad was diagnosed. His type and advanced stage of cancer didn't qualify for anything like this anyway. Apparently for her, it was caught in the earliest stages and she hasn't had any problems or any recurrence since 1993. Hoping the same for you. Quote Link to comment Share on other sites More sharing options...
john Posted August 8, 2005 Share Posted August 8, 2005 Try calling hopkins http://www.hopkinskimmelcancercenter.or ... ctorid=301 or Fox Chase in Philly http://www.fccc.edu/clinical/lung/photodynamic.html Quote Link to comment Share on other sites More sharing options...
z Posted August 8, 2005 Author Share Posted August 8, 2005 Yes, I have Hopkins on my list, and was going to call as soon as I got the final bipsy report. Fox Chase looks good. Thanks, Z Quote Link to comment Share on other sites More sharing options...
Ann Posted August 8, 2005 Share Posted August 8, 2005 Z...I have no information of the topics you mentioned but do want to welcome you to our LC board. Quote Link to comment Share on other sites More sharing options...
z Posted August 9, 2005 Author Share Posted August 9, 2005 Well, the biopsy showed squamous cell in the lymph node (not good news there), and nothing on the other 2 places where the two other needles went. That is all. I cannot help but feel there shoudl be more:) Hope to talk to many more doctors the next few days. Z Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted August 9, 2005 Share Posted August 9, 2005 Hi z. Darnit. I was hoping that the lymph nodes would not be involved. How did the doctor determine this? Did you have a mediastinoscopy? It is my understanding that if the lymphs are affected on the opposing side of the bronch as the primary tumor, then sugery is not a viable option. However, if the node that was found to be affected was on the same side, then you may still be a candidate for surgery. Is this also what you learned? Keep close with us. WE will get you through this! Cindi o'h Quote Link to comment Share on other sites More sharing options...
z Posted August 9, 2005 Author Share Posted August 9, 2005 Cindi, I had a ultra sound guided bronchoscopy with a needle biopsy (after the regular bronchoscopies did not reach anything). He biosied 3 spots, with 3 needles. The 2 needles that went into the lung are negative (he probably did not reach far enough inside), and the one that went into the lymph node showed squamous cell carcinoma. I am trying to get more answers, and am setting up appointments with tons of doctors. Yours is a good question to ask - thanks. Z Quote Link to comment Share on other sites More sharing options...
z Posted August 9, 2005 Author Share Posted August 9, 2005 To be more speciffic, one the: "Transbronchial aspiration of the medastinal lumph node" "The cellular picture shows a squamous cell carcinoma." If anyone has any other good questions I should be asking, eplase share:) Thanks, Z Quote Link to comment Share on other sites More sharing options...
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