I don’t even know where to begin…. I have liver mets now. Breast cancer has finally moved into a soft tissue organ. I knew it would happen eventually and I’m terrified.
On July 13th I had my Pet/Ct scan. It was done a few weeks early because I have been experiencing so much pain in my pelvis and low back. My tumor markers are holding steady at 45 (give or take a number here and there). Again I am still incredibly frustrated with the lack of radiological services we have in Reno. They are a bunch of idiots with letters after their name as far as I’m concerned. To make a long story short the liver mets found in this July scan were missed back in April. It’s because the radiologist who read my July scan documented “the size of liver lesions have gone down….” is what prompted The Blood Guy to grab the Director of Radology to read my April and July scan side by side. See below:
FINDINGS: Multifocal bony metastatic disease is again demonstrated. There has been a variable response with some areas of improvement and some worsening. There is new activity involving the right anterior 5th and 6th ribs, SUV 6.0 and 4.7 respectively. Reviewing the CT shows slight lucency and sclerosis suspicious for metastasis.
Therer has been interval worsening activity in the T6 vertebral body and in the left acetebulum SUV’s 7.7 from 6.0 and 8.1 from 6.5.
There has been some improvement in the T10 and L3 vertebral bodies with SUV’s 6.7 from 7.4 and 8.4 from a 9.8.
Scattered other areas of bony metstatic disease are seen with mixed lytic and sclerotic nature.
In the left lobe of the liver there is focal activity with an SUV of 5.3 down from 7.3 consistent with improvement of the hepatic metastasis. Other metastasis are not FDG avid, more diffuse in nature.
The sternocleidomastoid has some uptake with an SUV 4.2 but this is longitudinal and therefore is more related to muscle uptake.
Activity in the left lower lung has improved from an SUV of 5.1 down to a 3.2. this is adjacent to the thorocotomy defect and feel the uptake is more in nature with the physiological damage.
- Mixed response to treatment with some areas improving and some new activity, specifically in the right anterior 5th and 6th rib.
- Improving left hepatic metastasis.
LEFT HEPATIC WHAT??? No where in my April scan does is say anything about activity in my liver and no where in this report does he comment on my pelvis, my Ileum, Ischiium, the areas that have been causing me pain. THERE IS NEVER ANY DAMN CONSISTENCY!!!
Needless to say (and I’m sure you can imagine…) I am furious! and so is The Blood Guy. But on a good note, the Carbo/Gemzar chemo is at least working on the liver mets I didn’t know I had. So, upon more investigation and The Blood Guy really ripping the Directory of Radiology a new asshole we have learned that I in fact have Liver Mets. I have 3 very defined lesions ranging in size from 9mm, 11mm and 14 mm. I also have what is called Diffuse Mets. It’s like when you dip a paint brush in paint then flip it at the wall and get a scattered effect. That’s what diffuse means in medical language. I have lots of little lesions everywhere.
So now for the plan: tomorrow morning I am having a liver biopsy (bx) on the bigger lesion. We already know it’s cancer so why am I having a bx you ask? 30% of women’s receptor status can change over time or when cancer has moved from somewhere ie. bone disease to liver or vice versa lungs to bone or breast to bone etc. My last biopsy was 2 1/2 years ago when they took my rib out. We think my receptor status has changed (which may explain why Ibrance was more of a fertalizer…) and it’s important to know because different cancer = different chemo. We’re also doing someTumor DNA testing to learn more about any mutations that may exhist. Lots of trials going on with that kind of stuff.
What I’m scared about:
Ascites. Ascites is a buildup of fluid in the abdomen and from what I understand it can be incredibly painful and very uncomfortable. Sometimes it can get so bad a permanent drain is inserted so the patient can drain her abdomen when necessary. I’m really scared of that. Having soft tissue mets now opens a whole new gate. A gate for me has been fortunately closed because I only had painful bone disease and while I have been having a hard time walking and moving around and my back hurts so much at least I didn’t have to worry about soft tissue diease. I mean, like I said, I knew it was gonna happen just not this soon. AND I’m still terrified of ONJ (osteonecrosis of the jaw) since we increased my bone treatments back to monthly. And the liver bx makes me nervous because there is a big needle involved and I’m awake, a litte bit….. and oh how I hate needles. 🙁
So the plan is stay on Gemzar/Carbo, 1 week on, 1 week off (we did change that because my platelets just tank so badly….), continue with Zoladex (shot in belly) and Zometa (bone infusion), liver bx tomorrow, find out if receptors have changed and go from there.