LolasDaughter Posted October 22, 2007 Share Posted October 22, 2007 What a great website! I am so excited to have found it and just scanning many of the boards tonight has been very helpful - and hopeful. I am early in my journey of a caregiver to a LC patient, so much of the terminology and drug names are foreign to me - but I'm sure soon enough will be all too familiar. The reason I'm here is that on Thursday night, after coughing up blood all afternoon, my mom went to the ER. They did an x-ray and followed that up with a CT scan and found she has an 8 cm mass in her upper right lung that is 'consistent with carcinoma'. She is 60 and a life-long smoker. We are fortunate to live in NE Ohio and so Dad is taking her to the Cleveland Clinic for her pulmonologist appt. The only thing is they cannot see her until Nov 14 - over three weeks away! Being new to all of this, is there any way to get this moved up? In reading through some of the timelines, it looks like most get to the biopsy stage within days of finding a mass and I'm not sure if the delay is just because we're dealing with the Clinic or if there's something we can do to get her an earlier appointment. Any suggestions? I have other questions that are probably more appropriate for the Caregiver/Family Member portion of the site and so will post those there. I am so encouraged to have found all of you here! Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 22, 2007 Share Posted October 22, 2007 Hi, welcome to the group! I agree that Nov. 14 is a long time to wait before taking the next step. Whether that much delay would have a significant impact on your mom's medical treatment is hard to say, but for sure it would raise the stress level throughout your family, and that's never a good thing. I know that a delay of that length would drive me absolutely up the wall, and I'm usually a pretty calm guy. When the rest of the crew wakes up in the morning, someone may have a suggestion for a comprehensive cancer center in your area (the Cleveland Clinic may be one of those -- I just don't know) where cases like your mom's are handled quickly, all necessary tests are done on site, and the docs are all on the same page. If surgery is indicated, that could be done there too, by docs who do that type of surgery every day. Follow-up treatments like chemo could then be done closer to your home. Now, how to speed things up, whether it's at the Cleveland Clinic or somewhere else. If you got the referral to the Cleveland pulmonologist from one of your local physicians, then his office would normally make the initial appointment with the specialist. At least that's how it's been with all my specialist referrals, for lung cancer and other problems, and the same with my parents and inlaws. On occasion I was asked to call the specialist's office for the specific time, but the rails were already greased and I was worked in very promptly. On the other hand, if you're trying to get established with the Cleveland Clinic "on your own" and the standard appointments channel seems unresponsive, which is frequently the case, you could ask a local physician who is a caring, proactive type to help you out -- maybe your family physician, or one you've come to know at your local hospital. Or perhaps a social worker at your local hospital (their title doesn't come close to describing what they do). Medical professionals who have been in the field for a while have contacts all over the place, and it's mainly a matter of finding one who is willing to make a couple of phone calls for you, bypassing the appointments bureaucracy. Let us know how it goes. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 22, 2007 Share Posted October 22, 2007 Welcome-- Sorry to hear about your mom but glad you found us. Stay positive/focused, take it one step/one day at a time, be pro-active. Research, research and more research--knowledge is the key. In the TREATMENT & Rx. INFO LINKSS Forum there is a sticky post titled Misc. (Helpful Links) Information: that you might find helpful as well as others. Stay with us and let us know how we can help you. This is by far the best place for sharing, caring, support and hope here. Prayers for the best. Rich BEST HOSPITALS 2007: http://health.usnews.com/usnews/health/ ... p_alph.htm BEST HOSPITALS 2007 SPECIALTY SEARCH: CANCER http://health.usnews.com/usnews/health/ ... c=ihqcanc& NCI: MAP OF NCI CANCER CENTER LOCATIONS http://cancercenters.cancer.gov/cancer_ ... nters.html Quote Link to comment Share on other sites More sharing options...
LolasDaughter Posted October 22, 2007 Author Share Posted October 22, 2007 Thank you both for taking the time to reply. I had not yet been on the Treatments & Rx Forum - you were right, that was very helpful. We have a family friend who is a rep at the Clinic who we're hopeful will be able to help in getting Mom in to a pulmonologist quicker. I will let you all know what we find. Thank you all for the information. There is so much unknown right now and I find having answers even on just some of this 'basic' stuff comforting. Quote Link to comment Share on other sites More sharing options...
lc46 Posted October 22, 2007 Share Posted October 22, 2007 Hi and Welcome. You found a great site that will help you in many ways along this new journey. I definitely think 3.5 more weeks is way to long since you don't know what kind of cancer it is. My Mom has small cell which is very agressive and 3 weeks could mean the difference of spreading elsewhere or getting larger quite quickly. Since she is coughing up blood and her mass is quite large 8cm I would definitely talk to the friend of the family about getting her in sometime this week. If they still can't I would suggest you go elswhere. Your Mom should not have to go through 3.5 more weeks of coughing up blood. Please keep us posted. Dar Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted October 22, 2007 Share Posted October 22, 2007 Hi, welcome to the site, but I am so sorry you have to be here. Very good advice from the others. I remember being very worried about delays at the start of my mom's journey with this dreadful disease. I wanted everything done immediately, so that she could get started on treatment. You could see about a cancellation list and ask to be called if there is an opening. In my mom's case, a few weeks would not have made a difference in how she's done with her treatment, but you would not have been able to convince me of that in the beginning. Good luck with everything. I hope they have a plan for your mom soon. Shelley Quote Link to comment Share on other sites More sharing options...
Don M Posted October 22, 2007 Share Posted October 22, 2007 Welcome. There is only one National Caner Institute (NCI) designated comprehensive cancer center in Ohio and it is at Ohio State University in Columbus. http://cancercenters.cancer.gov/cancer_ ... osccc.html I think your mom would not have to wait 3 weeks for an appointment and all of the specialists would be under one roof. Often times, you can arrange to see more than one specialist in a day if needed. I think it would be a good idea to contact them and see if she can get in right away. Don M Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted October 22, 2007 Share Posted October 22, 2007 Hello and welcome I am sorry to read about your Mom's issues. I hope that she will get in to see the specialist and have good news. Please keep us posted and let us know how we can help.. Christine Quote Link to comment Share on other sites More sharing options...
LolasDaughter Posted October 22, 2007 Author Share Posted October 22, 2007 Hi everyone - oh, thank you so much for taking the time to post all of your encouraging words and insight. It is so helpful - I would say more than you think, but I think all of you know. Thank you! I just received word that my mom's appointment has been moved up to FRIDAY! This week! I'm thrilled that we're getting closer to finding out what we're dealing with. And at the exact same time I'm scared out of my mind that we're getting closer to finding out what we're dealing with. My Dad is doing an excellent job as her main advocate and 'the scheduler'. Dar, I did not mention it originally but Mom actually stopped caughing up the blood after that ER visit. Praise God! So at least she is not dealing with that currently. And Shelley, I love the idea of asking about a cancellation list. We didn't need it this time but good to know such a thing exists for in the future. I will definitely keep you all posted as we learn more and as questions/emotions arise (as I'm sure they will). Thank you for your kindness. Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted October 23, 2007 Share Posted October 23, 2007 It sounds like your Dad will be there with you at your mom's appointment. Tell him to bring paper and write things down. There will be so much discussed and it always better to have an extra set of ears and even better to write things down if possible. My sister and I went with my mom when she was first diagnosed. 3 sets of ears and it's amazing how one of us would remember something the others didn't. I hope all goes as well as possible. Shelley Quote Link to comment Share on other sites More sharing options...
ernrol Posted October 23, 2007 Share Posted October 23, 2007 Welcome to the site. It sounds like you have things under control now. You are fortunate to have two cancer centers near you. After the Cleveland Clinic you may want a second opinion Columbus. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
fillise Posted October 23, 2007 Share Posted October 23, 2007 Welcome--I second Shelley's advice to have some paper to write down what the drs say on Friday. On the day my mom was diagnosed she went into shock as soon as she heard the words "lung cancer" (well, that and 10 minutes before she heard those words she got a phone call telling she that her sister had just died unexpectedly). Anyway, that night when she called my brother and I listened to what she told him, then she gave the phone to me and I said "let me tell you what the drs really said. . . " Tell your dad to take a tape recorder if he needs to. We'll be here for you, Susan Quote Link to comment Share on other sites More sharing options...
LolasDaughter Posted October 24, 2007 Author Share Posted October 24, 2007 Well, I have taken the day off of work on Friday to be with Mom and Dad on Friday at the Clinic. I will have my pad and pen with me! And I love the idea of the recorder. My mom thinks I'm crazy (God love her) but I may buy one before Friday anyhow. We'll see. I've done a search on "bronchoscopy" here and got some good info. Can you tell me, will we leave Friday knowing more than when we went in? What type of info can/do they give you right away? I know we see the doc afterwards, so I'm assuming he'll have some news/update for us. Any other helpful tips to prepare for the day? Thank you! Quote Link to comment Share on other sites More sharing options...
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