Waiting impatiently - 1265213

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rick3401
Waiting impatiently - 1265213

Hello all,
Some background: presented to Pulmonologist with severe pain in front chest to shoulder blade and into left arm. Had ct scan June 9 results were large lobulated mass almost completely filling left apex consistent with pancoast tumor. Next step Pet scan July 9 results were left apex mass with posterior pleural and left superior mediastinal fat invasion. Max SUV of 10.6. Notes indicate this a pleural based malignancy.There is an azygos node showing max suv of 2.6. Had ct guided needle biopsy on July 30 and awaiting results. The wait is the worst.
Thanks of reading and any comments would be appreciated.
Rick

JimC
Reply To: Waiting impatiently

Hi Rick,

Yes, many of us can relate - waiting for test results can be maddening. Please know that there are many people here, even if they aren't posting in your thread, who are standing with you and sending positive thoughts your way for the best possible biopsy results.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: Waiting impatiently

I think it's fair to say this is extremely likely to turn out to be a cancer, but it's important to know that you'll have an appropriate plan once the diagnosis is made. We've got information here, along with what you hear from your own doctors, to help undestand the treatment you'll pursue. If the cancer isn't metastatic, it's realistic to pursue treatment with curative intent.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rick3401
Reply To: Waiting impatiently

Thank you Dr West(& JimC)-Dr West, working late on a Friday night? You're commitment to this site is impressive & appreciated. I appreciate you're straight forward reply. I've done a lot of research on this (including almost everything you have written on these type of tumors) and have little doubt it is a malignancy. Of course if it happens to turn out to be some type of fungal or bacterial infection I will be jubilant. Prepare for the worst hope for the best is the order of the day here.
At present I am angry at the time frame of it all. 2 months from CT findings to biopsy, and still do not have those results, seems a bit too long in my opinion. I expect another few weeks before a treatment plan is in place. In the meantime my local docs don't seem to have a good understanding of this malady and especially in controlling the associated pain. I have been prescribed oxycodone/acetaminophen 5/325, 1-2 tabs every 6 hours. That script doesn't do much for this pain, it takes 3-4 tabs every 4 hrs just to get this down to a 5 or 6 on the pain scale, and I'm concerned that is too much Tylenol. Would you have any recommendations that I could suggest to my Dr?
Deeply thankful for all you do for us.
Peace & Blessings,
Rick

catdander
Reply To: Waiting impatiently

Rick, I'm so sorry you're in this predicament. My husband was in your exact spot 5 years ago. The waiting is very difficult for a wife and I know I can't imagine how it is for you.
The pain my husband experienced when it was understood what was going on was not helped by the levels of oxy you're given and it's very easy to overdose on the tylonal added and can and does quite often lead to liver failure. It wasn't until my husband saw the oncologist that the pain was adequately managed. It is appropriate to ask your doctor to reexamine your pain management options him/herself. nerve pain meds added to a time release dose of oxycodone with the 5mg tabs you take now as breakthrough pain med is typical place to end up with a large pancoast tumor. It made day and night difference for D.
http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer-...

Good luck,
Janine

Dr West
Reply To: Waiting impatiently

That 2 month interval is a long time -- regrettably so -- and between that and the lack of confidence you have in the local docs there, it suggests to me you might really benefit from finding other people with more experience in lung cancer/Pancoast tumor to either oversee your care or provide suggestions for the local docs to follow.

I do sometimes see docs provide woefully inadequate pain relief; reating everyone with percocet, no matter how serious there pain is, is something I see all too often from people who don't have enough experience treating cancer pain properly. That's often from ER docs or primary care physicians, but if oncologists are just flailing with inadequate pain control, it's a signal that they aren't up to the task, IMHO.

Dr. Harman's summary is a great start. I think it makes great sense to seek a long-acting pain medication, such as a MS Contin or Oxycontin that are taken around the clock every 8 or 12 hours, or even a Duragesic (fentanyl) patch that only needs to be changed every 3 days. Beyond that, you still add a short-acting pain medication, which might be a combination like Percocet (as long as you don't need too much in 24 hours, since the Tylenol in it limits what you can take in 24 hours), or I often favor the opioid alone without the Tylenol to avoid that limitation of Tylenol ingestion.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rick3401
Reply To: Waiting impatiently

Update: dr office called to remind me of appointment on Thursday. I asked if they had received my biopsy results and was told yes they have them. I said ok put my mind at ease and tell me if benign or malignant - the reply was "that will be discussed at your appointment on Thursday".
What kind of dr would let his patient live with the uncertainty for days. If benign that's wonderful let's move on to treating whatever it is...if malignant, well I'm a big boy I can handle the news over the phone.
So. 2 more days of not knowing...lord give me strength.

catdander
Reply To: Waiting impatiently

OMgoodness Rick. Full disclosure, my husband, D's onc told me I was a bulldog in regards to D's care and we all agreed that was a good thing. With that said, I'd go to the office and get the results instead of waiting. I don't know how our cancer center would handle your situation but I have to imagine they would help ease my mind, whether that is to notify the doctor or nurse practitioner to call, I just don't know. We live a mile away from the cancer center so it's easy enough to access anytime. BTW, being a self advocate is necessary and can be done without angst for either party.

When we go to the cancer center to get results if we have to wait there's a nurse who will whisper results good and bad so we don't have to wait.

For future reference I make sure the scans or biopsy results appointment is made as close as possible to the test. It takes a day or two to get radiology reports at our center so when the CT appointment is made I make sure the results are 2 days later (the appointments are made at the same time). Full biopsy reports take longer.

There are places and doctors who can get and give CT reports same day. Doctors are very aware or at least should be that waiting like this is excruciating and not at all healthy for their patients.

I just remembered you're not dealing with a cancer center but probably a pulmonologist or a general practice so it's understandable that they aren't set up to cater to people living with cancer. I definitely felt the difference between the cancer center and other. I've never dealt with a better group of people than Bruno's cancer center.

If it helps you can vent here. I'm confident every doctor on this site does everything they can to keep people from waiting.

rick3401
Reply To: Waiting impatiently

Thank you catdander for your great replies. At the moment I am just so furious that they have this info and will not clue me in. The office will not give me a copy of the report because the dr has not reviewed it with me yet. My local cancer center won't see me unless I have the biopsy results with definite diagnosis in hand. Whatever the outcome I will be looking forward to finding a new Pulmonologist. I doubt this guy will care but I can't wait to say "your fired"!
I can almost understand that he wants a face to face to tell me it's a malignancy but if he tells me it's benign on Thursday and has allowed me walk around for days thinking otherwise I will be one angry SOB and that doesn't mean "short of breath"
Thanks for letting me vent.

rick3401
Reply To: Waiting impatiently

Catdander & Dr West
Finally- diagnosis. Pancoast tumor, moderately differentiated adenocarcinoma. Getting me into an oncologist ASAP. Oncologist will explain everything else as far as stage, metastasis, etc.
Thanks for being here. Will post as it happens and will def be seeking advice.

agent99
Reply To: Waiting impatiently

Hi Rick,
I'm so sorry to hear your diagnosis and that you were made to wait as long as you did.If you are in the US you have the right to request a copy of the actual scan on cd and the written radiology report from the provider that performed the scan. The provider is usually not the doc office and even if it is you still have the right to the documentation as soon as it is uploaded even if not reviewed. I have waited 10-15 minutes after MRI and CT scans and walked out with cds. Reports may take a day or two to get in the record but they are also obtainable directly from provider.

There are pros and cons to having that info before doc reports results in person but I tend to prefer to have the info either to research myself or to bring up issues at appointment or if I am really concerned call the office about a finding and try to get an explanation or find another specialist before seeing the doctor who is holding the info. No doubt you will have to fill out forms and provide picture if (fax, email or in person). To avoid bureaucratic delays even though I have DPOA I do sign my sweeties name, don't tell anyone!! Hope this helps for the future. This applies to all tests by the way not just radiology.

Dr West
Reply To: Waiting impatiently

Sorry about the delays. I am a doc who really prefers to not give big news over the phone if at all possible, but I try to minimize the time between getting news and being able to deliver it. I have many of my patients undergo scans the same day as their visit with me (not a possible arrangement at every center), but pathology results come when they come, and you can't always estimate precisely. I sometimes have patients scheduled to see me as soon as I hope to have results back, then don't have them -- in that case, we try to reschedule for a few days later, ideally not requiring them to come in just to hear we have no big news. There's no way I know of to give timely information and to deliver news the right way -- I just don't think it's right to give big news over the phone, and I try not to break the rule by giving good news over the phone, lest people presume that not getting an early call from me means that the results are bad. I just want to discuss all big results in person, with as short an interval as possible before they know what I learn.

As for the results, I'm truly sorry, but I believe you were expecting as much (I didn't think I was sticking my neck out to say it sounded overwhelmingly like cancer) -- now you can move forward with developing and pursuing an actual plan.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education