Input/experiences

This topic contains 2 replies, has 2 voices, and was last updated by  teamfrank 2 weeks, 4 days ago.

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November 29, 2017 at 1:43 pm  #1293583    

teamfrank

My dad’s cancer journey has been atypical. You can’t even really say he definitely has cancer as their only attempt at obtaining a sample (bronchoscopy on October 6th) was unsuccessful. As you are all well aware, there is no diagnosis possible without a biopsy. They did a PET Scan on him on September 22nd and had done a CT Scan just about 10 days or so before that. He has a mass that the reports indicate should be considered malignant unless proven otherwise. Fast forward to today. He had another scan done (no idea if it is a PET or CT scan) today and then saw his doctor a few hours later for results. The doctor told him and my sister that the mass has grown but not much (he said “maybe an inch”). He did say that just because it hasn’t grown quickly does not mean that it won’t start growing quickly in the future. I’m sure in his practice he has seen a lot of cancers grow much quicker than this. However, it is in my dad and in just a couple of months it has grown about an inch. To me that’s fast. My sister told me “another type of doctor will call to set an appointment for dad. This doctor is like hospice doctor because he will treat dad and not the cancer. so whatever dad’s health needs are is what he will do.” I am thinking this may be a palliative care doctor. Any thoughts on all of this are very much appreciated.

November 30, 2017 at 6:57 am  #1293585    
JimC Forum Moderator
JimC Forum Moderator

Hi teamfrank,

The rate of growth of a tumor is based on the percentage difference in size from one scan to the next, so an inch could represent a different rate of growth depending on the tumor’s previous size. That being said, even if your father’s tumor is quite large, an inch of growth would be unlikely to be considered slow growth. On the other hand, scan reports usually state tumor dimensions in millimeters or centimeters, and that’s how oncologists refer to them. Since you’re getting the information second-hand, is there a chance that the doctor said a millimeter rather than an inch? One or two millimeters usually represents slow growth.

It does sound as though your sister is describing a palliative care doctor. Given your dad’s reluctance to attempt another biopsy or initiate treatment, keeping him comfortable is a very good idea, and palliative care specialists do a terrific job of that. Studies have shown that patients who receive palliative care actually tend to live longer. And you can always either switch to or add anti-cancer treatment if the need arises.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

November 30, 2017 at 8:08 am  #1293586    

teamfrank

JimC, thank you so much for your response. I believe anything is possible as far as miscommunication occurring through second-hand information. I will tell you that when the mass was found on my mom’s lung, my dad told me hers was about twice as big as his. My mom’s measured 2 x 2.3 cm. So the doctor could be discussing the size of my dad’s mass in centimeters rather than inches. My sister did say that she encouraged my dad to register for and starting using “health e vets” so that we can look at his records when we are there visiting. Hopefully he will do that and then maybe some of my confusion will start to clear up.

I am hoping that he gets an appointment soon, with any doctor really, who will give him some general ideas of what he might expect to potentially experience as things progress. That was what he had hoped to get from doctors at this point. He just wants to know a general timeline of how you would expect the disease to progress and what the end may look like and if they would be willing to speculate on when they may expect he would reach the end of his life. He said he realizes that even if they had gotten a tissue sample, any time frame they give him is only a best guess and he could live longer or shorter than that amount of time. He just wants to know what their experience with other patients leads them to believe is likely. We most want him to stay comfortable no matter what so seeing a palliative care doctor is a great step for him.

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