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Dec 3, 2018 12:22PM
Dec 3, 2018 12:28PM
Hi Sass, thanks for the reply, you are taking more interest in me and asking me more questions than all 6 of the doctors I have seen. (1. Family doc 2. chiro 3. Med onc 4. Rad onc 5. Thoracic surgeon who did an 8 second assessment and a 1 minute appointment and gave me the IN diagnosis 6. My new family doc since I fired my last one for telling me it is all in my head plus being un-empathetic and likely burnt out.)
I will start here ( this will be a long story):
Nan a couple more questions.
What & When were the onset of symptoms.- The pain started in right upper quadrant on the lower anterior right ribs. Dec 2017. Rads ended Oct 2017, surgery was June 2017. I have all my documentation from cancer center. I complained of a 3 week history of this pain, very uncomfortable, to onc. She examined me and did liver profile, abd US and bone scan:
liver panel - I don't have copies but she states all enzymes were normal.
bonescan - degenerative changes only
US,- what appears to be fatty liver (WTH I am healthy not over weight and good diet)
She went on to say must be muscular go see FD. He did an xray said it was fine and in my head, pain continues and got worse. I demanded more investigations, I have pelvic US and MRI which showed fibroids, enlarge uterus and mild ascites, ovaries could not be seen. I had a CT ( again I demanded it) but my doc put on requisition upper chest pain so they did dome of liver up, my pain was lower ribs. That test showed fibrosis and nodule in my lung likely d/t radiation. I am having repeat CT in 6 months ( so a year from the first). No imaging from dome of liver to uterus.
At that point my pain was now from hip ( top of iliac crest) to mid upper spine. That was when he tried lyrica, it did not work and I stopped it after 3 weeks. I then saw thoracic surgeon ( Breast sx secretary would not return my calls) he said "why are you here you have IN, take lyrica good bye". I googled it and researched it and was perplexed bc I did not really fit the S and S picture nor did I ever have a thoracotomy or shingles. All docs nodded head and agreed. My FD would not even increase lyrica.
New FD she says try higher does, we went to 150mg Bid. Pain lessoned after 3-4 weeks, from "I can take this anymore" 8 to ok this sucks but I can do it 5/10) and I stayed there. I had good days and bad but that was throughout whole ordeal. So now past 3 weeks bad days have been increasing and past week all days have been bad. I don't think the lyrica ever worked it was just the pain waxing and waning. I did not take my morning dose this morning, and will wean off it and see.
1. where at top does it start? top is T2 ish, on the boney prminences of the upper spine 2-3 vertabrea, then behind scapula, Bra stap area on the side very tender to touch have to wear sports bras ( this is new past week) to lower ribs on the side, and front to abd area.
2. At what body part does it stop? iliac crest to groin sometimes making walking difficult.
3. What body parts are affected? (Torso, arm. leg) specifics -only torso, nothing to arm or leg.
4, does it occur at any special time? (sleep, sitting, walking, bending) all, constant dull with intermittent sharp
5. What makes it worse? no rhyme nor reason, but gets worse with movements such as running jumping
6. What makes it better? walking relieves it some
7. drugs that make it better? (you identified Lyrica and drugs tried before that?) have none to try accept OTC, as I said lyrica may or may not have been helping, Tyl with muscle relaxant helps a bit reg not at all, oh I tried CBD before but no effect I could not afford to experiment with dose and frequency.
8. Does temperature of room make it better or worse no not that I have noticed.
9. Pain scale (refer to page one). Pain scale pre lyrica and post lyrics pre and today 8/10. post 4-5/10
10 Associated symptoms, (fatigue, lassitude(I don't give a crap), lack of interest in daily activities, lack of care of hygiene) just during pain, I obsessively thinking about it.
I am convinced they have missed something ( well obviously :)) . This is what I read in Dr. Susan Love's Breast book " Metastasis to the bone is generally diagnosed when the patient is experiencing pain. Sometimes it is hard to know whether the pain is ordinary back pain or other conditions like arthritis. Usually the pain you get with breast cancer in the bones is fairly constant and doesn't improve overtime but it may wax and wane and it may move around. ...Bt pain from cancer is steady and usually persists at night when you are not doing anything. Sometimes however it is more erratic. Oncologist Craig Henderson tells me that he has been 'impressed with how often the cancer pain would decrease substantially or even disappear for weeks or months on end and then reappear without any treatment at all I think bone pain is sometimes overlooked as bone mets because it is not steady'"
Having said that, it sounds like me BUT I have had a bone scan last January - could something have been missed?
Thank you for listening and caring :)
5/30/2017, LCIS/DCIS/IDC, Right, 1cm, Stage IB, Grade 2, 1/4 nodes, ER+/PR+, HER2-
6/30/2017 Lumpectomy: Right; Lymph node removal: Sentinel
9/20/2017 3DCRT: Breast