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Need some help
Hi,
Soooo.......Uhhhhh....I don't even know where to start. First of all, Andi, thank you for you info a few days ago regarding scan solution. As usual, you were there for me. I read it before I went, and drank most of the solution and didn't have any reactions like the last time, hand-wise, "just" the GI issues. I figure that the last time I was also on Clasteon (the bone remodeller) and somehow that antagonizes my kidneys and maybe interacted with the Gastrografin.
Yesterday I went for the followup to the scans with my onc. It was a beautiful day, I meditated, I felt positive for my appt. I've had scans every 3-4 months for the last 2 years and they've always shown sternum stable and NEMD (no evidence of metastatic disease)-there have been some spots that have been noted and I have questioned but not really gotten answers. Usually I prepare for the worst and expect the best. This time I just expected the same. I got the report at an office at the hospital so I could go over it before my appt, since my onc won't print reports and I don't like to speedread while he's talking.
There has been interval increase in size of a 5mm pulmonary nodule in the left lower lobe and subpleural 3 mm pulmonary nodules in the left upper lobe have minimally increased. Wait, there's more- "Right adrenal mass has developed central calcification since previous and has significantly increased in size from 1.7cm to 2.3 cm in short axis diameter. There is also a focal lack of enhancement of the adjacent renal cortex in keeping with invasion of the adjacent renal parenchyma. This is compatible with progression of the metastatic right adrenal nodule."
What?????!!!!!!!$%^%$$&***!!!!! I was stunned and PISSED OFF!!!! What do I have to do to keep on top of things? I questioned 4 months ago the things that were noted (a longstanding 2mm lung nodule-how long is longstanding? something on my L2) and asked the onc to compare these scans to May of 2012 when the radiologist reported that I had a healing response to therapy after my chemo and rads to the sternum and at that time my TMs were down (15-3 from 40 to 6, CEA from 25 to 2) and I could finally wear a bra comfortably again. In May I had been having lower back pain for about a year and my CEA was up again to 14. I asked my onc if there was ANYTHING that showed ANYWHERE and gave him my printed questions of areas to go over with the radiologist. I couldn't go talk to the radiologist myself because it's like Fort Knox-I'm not allowed. My onc forgot to do that when I went in for a followup and I never got answers after that. If this adrenal thing has been there for awhile and not mentioned, I will be more pissed off!!!!
Regarding the CEA, it is now up to 25. Yes, I had a head MRI and the thinglets that were there before are still the same, and possibly evidence of a stroke. When I was having some dizziness issues in July, my onc suggested a head CT and I asked for an MRI because my rad onc said they were a more definitive scan. My onc gave me the story of the MRI only coming to our area once a month and there's a long wait so he wouldn't order one. This is the same onc who wouldn't order a bonescan for me when I had the sternal metastasis. So I went to a private clinic at a city 3 1/2 hours away and paid for an MRI. I wish I lived closer to a larger centre, or that our system wasn't so overloaded that I have to keep thinking, thinking, thinking, myself to figure things out. I also wish Brenda was here, because I need her help. I remember she had an adrenal issue.
All of you don't know how much you mean to me and have helped me. Has anyone else had anything in their adrenal gland? I don't drink coffee, tea, and try to avoid any stimulants because I know I have had an adrenal problem for years and one of my doctors has said she thought I had adrenal exhaustion before I was diagnosed and that they are thinking it's leading to chronic diseases and cancer. I really am trying to keep a level head about this-the lung things could be inflammation or something else, and I'm even hoping the adrenal tumour is inflammation, but I don't know about that.
I am trying to arrange an appt with an onc in the centre 3 1/2 hrs away, and also my rad onc at the same place. My regular onc there is away on a research sabbatical so I'll be seeing yet another new doctor and going over the whole thing again.
I do feel better having vented. Any suggestions would be appreciated.
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Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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