Hi, my husband Tim had surgery Jan.22 to remove a nodule from his RUL. It was supposed to be a VATS wedge resection but turned into a partial lobectomy due to bleeding complications. During the surgery the pathologist said there was no cancer in the sample but there were "atypical" cells in the margins. Which the surgeon went back in to get. He said three pathologists looked at it and they were "baffled". However, he said a thorough analysis would be done and we would get a diagnosis from this. Well, Friday our CT surgeon's nurse told my husband the pathology results were in and that our surgeon would sit down and discuss this with us when he has his follow up appointment on the 11th. Which was in 11days from the time he spoke to her. My husband was shocked. He asked why we had to wait 11 more days when the results were in. He has been beside himself while recovering from major surgery. I told him obviously it must be good news or he certainly wouldn't toss this to the side and say I'll see them the next time they come in. Is that a safe assumption? I will say that in working with this physician I have felt that we are just one of the masses. I have felt dismissed and generally that we are just herded in and out. Uncared for. It is so unsettling and not what I expected since I work at the university hospital that we are going to. Also, after the surgery the surgeon told me Tim's lung was very hard and that this may not be cancer but inflammation. Any suggestions? A worried wife.
Post surgical anxiety. - 1261910
sheliatim
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Reply # - February 2, 2014, 07:59 PM
Reply To: Post surgical anxiety.
Hi Shelia, How awful for you both to have to wait so long. Most doctors here have discussed this very subject and all have said they try to get to their patients asap after biopsy or scan results are in, hours or a day or two. However it's not possible for anyone here to guess what's going on, I'm sorry.
If this is a doctor with whom your husband will be working I think it's important to have a discussion about how important communication will be.
I hope there's no need to worry about that. Keep us posted.
Janine
Reply # - February 2, 2014, 08:00 PM
Reply To: Post surgical anxiety.
I think it's very appropriate to request an earlier appointment and then really press for it. It certainly can take a good week or so after surgery to get a complete, thorough review of the pathology, but I'd hate to leave someone waiting on a high stakes question like that. I don't know what to say about what it means...I'd just want to get clear answers as soon as possible.
Good luck.
-Dr. West
Reply # - February 2, 2014, 08:16 PM
Reply To: Post surgical anxiety.
Thanks Dr. West, I wanted to say I'd press for an earlier appointment until I got it. My husband's oncologist told me I'm a bulldog for my husband's care and that it was a good thing. :) Though I'm not sure I like the analogy I'm glad the doc appreciates my tenacity. Go for it Shelia.
Reply # - February 3, 2014, 12:54 PM
Reply To: Post surgical anxiety.
Thank you both for your support. The CT surgeon returned my husbands call this morning and told him the results were NOT in and that they still don't know what it us. He said it will be an additional 2 weeks before we may have an answer.
Tim had a CT needle biopsy and bronchoscopy that were both neg but the CT showed a 2.4 cm spiculated nodule that lit up on a Pet Scan along with some lymph nodes next to it. I was told "if it looks like a duck, walks like a duck and talks like a duck, it's probably a duck. I can't help but feel hopeful since this is his third biopsy not showing any cancer cells. I have been trying to research what a "thick" lung could mean since the surgeon said it was very thick when he went in.
So I guess we just sit and wait. It's excruciating. Tomorrow it will be 2 weeks since surgery and today he said 2 more weeks. I just want this to be over for my husband.
Reply # - February 3, 2014, 01:20 PM
Reply To: Post surgical anxiety.
I'm so sorry you've got this wait. I don't know for sure and I've not heard of it taking so long...But I'd take it as a hopeful sign.
My husband had his first 6 month scan this morning. We have an appointment Wednesday, 2 days seems long but I'll not feel so anxious after knowing what you and your husband are going through. D has had 3 month scans for the almost 5 years he's been dx. This is the longest he's gone and it's blowing his mind (not in a good way).
Reply # - February 8, 2014, 11:35 AM
Reply To: Post surgical anxiety.
So the dr says it's not cancer and we won't have the results of the pathology report for another month. He said in my husbands 1st post surgical f/u to f/u with his primary care dr since it's not cancer we don't need him anymore. Just to make an appt for a month to get the actual pathology results since they sent it out and they have no idea what it is. So he removed 80% of my husbands rt lung and pretty much said "see ya have a nice life". And we don't know why. He didn't even listen to Tim's lungs in the f/u appt. he didn't even listen to his lungs. I just can't fathom that. I can't believe the experience I have had with this. That my husband has had. No one has ever returned any oft phone calls or answered a single message on the patient portal designed to communicate with the doctor and his staff. I have never met his nurse Salem and we have never had a contact person or anyone to answer any of our questions. When my husband got upset and called the drs office 4X last Friday they got very angry and treated him like a criminal. I feel so bad for my husband. All he has ever wanted was someone to communicate with him, to be understanding and a little caring. No one has ever been. I'm upset and venting. My husband deserves better.
Reply # - February 8, 2014, 02:43 PM
Reply To: Post surgical anxiety.
Surgeons do surgery and often don't have much else to offer a person. He wouldn't necessarily have anything of value to offer your husband whether or not it was cancer. It's a wonderful thing that he doesn't have cancer and it would have been better to have found that out without having one of the most invasive and difficult to recoup from surgeries.
Everyone, including the consulting doctors have to take responsibility for the decision making. Dr. West started this site so people could be a part of the planning because there's just too much for a doctor to be expected to know today about everything he/she treats.
The most important thing now is to be sure your husband gets the best care moving forward. People recoup better post thoracotomy with pulmonary rehab though most don't receive it because they aren't offered it. Take this opportunity to be a self advocate. A pulmonary specialist may be of help to make sure your husband recovers as best as possible. http://www.nhlbi.nih.gov/health/health-topics/topics/pulreh/
I'm so sorry you 2 are in this position. I was beside myself after my husband's thoracotomy and no way to speak to anyone about what's next until his appointment with his onc two weeks out. I didn't even try to communicate with the surgeon for I'd already found he did more harm than good in the context of communicating info on lung cancer. I hope you move through this, get the help he needs and deserves and get on the job of living life.
Janine