New to boards-looking fo advice.
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still no primaryblweber2 said:Thank you Vicki.
Things areThank you Vicki.
Things are moving fast. I see the doctor to start radiation on my sacrum tomorrow. My oncologist also took 12 of blood today and set up a bunch of appointments for this week. I am having an mri of my breasts tomorrow morning, then see radiation dr, then have CT scans of chest,abdomen and pelvis tomorrow. Then Thursday I am scheduled for mri of my head and then a bone scan. Friday, I see the nuerosurgeon with post op of my open biopsy then afterwards a mammogram and ultrasound of my breasts. They also have me set up for a colonoscopy and endoscope (to look inside my stomach, I guess).
My oncologist is really good about giving me copies of all my reports. The last biopsy said that the pathologist thinks breast or lung ( I have never smoked) and that eventually we will find the primary if not more mestastic lesions. I only have the one on the front of my sacrum now.
I have a special needs child so I am use to gathering all records from appointments and I actually file them physically and on a flash drive. I have started spread sheets of my blood work so I can get a visual of my counts over the months.
I'm so scared and trying to prepare the best I can.
They still can not find the primary cance. The cells that were found in my sacrum are either breast or lung. Both of my biopsies state that the only way that this could be found in the tumor in my sacrum is mets. So I had the mri,mammogram and ultrasound of my breasts which all show dense but nothing is showing. The medical oncologist feels a large lump in my right breast so now I am scheduled to see a breast surgeon on the 25th to be scheduled for a lumpectomy so it can be biopsied. They think that I might have had a bb size cancer that my immune system took care of but not before it spread to my sacrumm. I also go in for a colonoscopy and endoscopy on the 24th with a pet scan the same day.
My anemia is a little better and ferritin levels are slowly coming up. They also did a CT of pelvis and abdomen which showed a nodule under my left thyroid with 15 mm of soft tissue surrounding it. They hope the pet scan will show something.
I start radiation therapy on Monday. The doctor said that my insurance might fight it because in cases like mine when it's spread, they do palatine when it's stage 4. I told him that no one has said anything to me about stage 4. He said that he is doing 6 weeks of radiation to kill any cells in my sacrum so they don't spread out.
He said the problem is that I am not a text book case and that they are not sure how to treat me since they can't find the primary cancer but only have the cells from biopsy to go on.
I am beyond upset. I know my doctors are working hard to find it but I am only 37 years old I want a plan. I want to find my cancer and destroy it.
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