hmaineri Posted July 9, 2008 Share Posted July 9, 2008 Just as a warning... this is kind of a long one. I am a 33 year old woman, and have smoked since I was sixteen. I was having some right shoulder pain and pain under the right rib cage for about 10 months. I had been to see my reg doc about this, and was told not to worry, that maybe I just pulled a muscle and need a good massage. Then on the 20th of June I got a very high fever which lasted for 5 days before I was smart enough to take myself to the ER. Upon arrival they did blood work and a chest x ray (I had a slight dry cough) and told me I had pneumonia (I was shocked). I saw my x ray and the large white spot in my right lung so I believed them. I was put on IV meds and returned the next day for more, and then was put on 3 days worth of oral meds. At the time I asked the doctor what were my chances that this could be more than just pneumonia, and he replied "slim to none". So needless to say I was surprised when my pcp called me the next day and said that i needed to have another x ray and maybe a CT scan. However after looking at my x ray from the hospital (I asked for copies of everything before I left) he decided to go right to a cat scan with contrast that day. He called me back within 15 minutes of my scan being done (the radiologist called him when I was still on the table) and said I needed a biopsy. So he made me an appointment with a pumologist. I made sure that I brought all my records including my scan on disk, the radiologists report and all the ER reports. here are the findings on the CT scan: There is rather homogeneous consolidation/collapse/mass in the right lower lob medially, involving the superior segment of the right lower lobe and extending around the right mainstem bronchus and narrowing the superior segment of the right lower lobe bronchus. It is worrisome for a neoplasm such as bronchogenic carcinoma, small cell carcinoma, lymphoma or other metastatic disease with peripheral atelectasis. However no other lymphadenopathy is noted and the left lung is clear. There is some associated ground glass opacity in the medial segment of the right lower lobe and is probably related to volume loss. then included under the impressions was that in addition to the above there is also a small pulmonary nodule 4 mm which is too large for a normal vessel in the location it was in. So I went to my appointment with the pumologist. He popped my ct disk in his laptop, and after figuring out how it worked looked at the mini-movie it played for approx 30 seconds and turned around and said he wasn't worried and mentioned pneumonia. He also stated that he wasn't worried since I was so young and that I had no history of smoking and that I should wait six weeks to have another scan because he thought that everything would disappear. At this point I knew that he didn't have all my information correct so I asked him if he had read my paperwork. He hadn't until he proceeded to pull it out and read it in front of me! And at this point I also told him that I was not comfortable at all waiting six weeks to 'see'. So he unwilling made me an appointment with a thorasic surgeon, but basically hinted that it would be a waste of my time and that I was over-reacting. I live in rural New Hampshire and this is the kind of doctors we unfortunately seem to have a lot of. So now at this point I am going to Boston to Brigham Womens Hospital and praying that I find someone that doesn't dismiss me so readily. I am shocked and scared at the same time and needed to vent. So thank you in advance for listening/reading. Any suggestions would be appreciated. Thank you. Hope Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted July 9, 2008 Share Posted July 9, 2008 Hope, you're doing exactly the right thing. Taking charge of your treatment. Are you going to see the thoracic surgeon at Brigham Women's, or is this a different type of appointment? In any case, I'm wishing the best for you. I hope you get a thorough, interested doctor there. Lynn Quote Link to comment Share on other sites More sharing options...
hmaineri Posted July 9, 2008 Author Share Posted July 9, 2008 Thank you Lynn.. yes my appointment at Brighams is with a thorasic surgeon to discuss my options and hopefully schedule a biopsy. I wish my doc would have sent me there to begin with. Especially when the pulmologist I saw told me that his office didn't do biopsies. I feel as though they have now wasted almost three weeks of my time. But hopefully next Weds will come fast!~ Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted July 9, 2008 Share Posted July 9, 2008 Well, let's hope that the pulmonologist was right, and that the biopsy is negative! But, no matter how it turns out, this, in my opinion, is not a waste of anybody's time. It's simply good medicine. Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 9, 2008 Share Posted July 9, 2008 Wow! Sadly for many of us it takes some time to get a proper diagnosis. I went through various crap...weeks of it too...until I finally needed to be admitted to hospital. So I feel for you. It is a very scary time, and if you are like me, you just know something is wrong. Please don't worry too much about 3 weeks though, and unfortunately you probably have more waiting ahead of you before active treatment if needed, can begin. I waited and had successful first line treatment..so it can happen. And, in the meantime, I will pray for you that it is not LC. The waiting and the beginning is so hard. But I promise you will feel better once you get some answers and a plan for whatever it is . Take a deep breath...and take the best care of yourself you can Sandra Quote Link to comment Share on other sites More sharing options...
Muriel Posted July 10, 2008 Share Posted July 10, 2008 Hi Hope and Welcome. Sorry you've been given such a run-around. Not the most comfortable way to start this journey, if indeed you need to be taking it. I don't blame you for being angry at all. Is the surgeon you will be seeing in Boston the one the pulmonologist recommended or did you find the surgeon on your own. Don't feel that you need to return to the old pulmonologist. If this is cancer, you'll be better with a care team in Boston. Do let us know what happens next. Muriel Quote Link to comment Share on other sites More sharing options...
Nick C Posted July 10, 2008 Share Posted July 10, 2008 Hope, good for you for reacting to your health situation. When someone is concerned and wants to be dilligent, that is NOT over reacting. Good luck with meeting with other doctors. You seem to be doing all the right things!!! Quote Link to comment Share on other sites More sharing options...
hmaineri Posted July 10, 2008 Author Share Posted July 10, 2008 The pulmologist gave me the option of three hospitals... Catholic Medical Center, Dartmouth Hitchcock and then Brighams. I knew nothing of Catholic and had a very bad experience at Dartmouth last year when my husband broke his neck in three places they said he was inoperable (after finding a new doctor and an 8 hour surgery he now has a new neck) so I picked Boston. Plus knowing just from word of mouth here in New England that Brighams is supposed to be fabulous. No matter what the outcome I will NOT be returning to the same pulmonary doc. I lost any trust or respect in him when he wasn't even capable of reading my chart before he wanted to give me his opinion. And this was after I did all the leg work in actually hand delivering them to his office on top of it! I find it hard to believe that 30 seconds of looking at a cat scan on his old laptop he was able to pretty much dismiss all the findings of the radiologist (which by the way he had not bothered to even read findings on the report until i asked him if he had). I can say that I do feel some relief in being able to talk about this on this site. My husband is too scared to discuss this, and there is only so much that I want to talk about in front of my 14 and 7 year old kids. Quote Link to comment Share on other sites More sharing options...
Ry Posted July 10, 2008 Share Posted July 10, 2008 Hi Hope- As I read your post I was quite impressed with your PCP being on the ball and sending you for a biopsy (or at least thinking he did). You are lucky to have him on your team. Make sure you let him know you weren't happy with the person he referred you to. It's important that your biopsy take place quickly - your PCP may be helpful in getting that moved forward. I hope it's nothing and that you have no need to be here. Keep us posted on how it goes. Welcome - Rochelle Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 10, 2008 Share Posted July 10, 2008 I'd like to welcome you to the group and reinforce what Rochelle said. The PCP deserves a lot of credit, and he needs to know about your experience with the pulmonologist. And thank goodness you're not one of those "yes, doctor, whatever you say, doctor" types!! Much Aloha, Ned Quote Link to comment Share on other sites More sharing options...
hmaineri Posted July 10, 2008 Author Share Posted July 10, 2008 I totally agree with the comments regarding my PCP. He has been my doctor for many years and knows that I am not one to run to him for every little thing, so he takes me seriously when I do have a complaint.I have a follow up with him on Friday and will be passing along my experience so that he will know not to send other people to this particular doc. And no matter what the outcome I KNOW I will make it through this journey. I was diagnosed at 22 with Hep C (no idea how I got it) and after a liver biopsy and treatment with Interferon I can say I am one of the lucky few that had total 'remission'. I will always carry the antibody but I have been active virus free for 8 years now. On the 25th of this month it will be one year since my husband broke his neck in three places (shattered his C-3, fractured C-4, and T-6) he survived with no paralysis and is now back climbing power lines at work. So when it comes to miracles I can say without a doubt I do believe. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.