Bone Cancer

[brattygirl]

Hello I am a 38 year old female who was just diagnosed by my orthopedic with metastatic bone cancer yesterday. After CT scans , MRIs, bone scans. I am in alot of pain but not just in the area the cancer is in at least I think, they tell me that this type of cancer is a secondary source and the primary source in my case is unknown as of right now, they are not sure where it is or where it started. Im very scared and I dont know what to expect. I have my first oncology appointment this coming wednesday and I am hoping alot of my question will be able to be answered. How will they go about finding out where the cancer started ? I also have 3 nodules in my thyroid (throat) they are going to needle biopsy them in a week, they may be thinking that it is the primary site. In the bone scan they also found what appeared to be a mass of some sort in/on the skull/brain. I am just so confused and have no answers I guess impatient and cant wait until the appointment to get some answers or even talk to someone who has some experience in this matter. thank you for listening

[fastfreddie]

hello bratty,

I hope you're doing OK... are the bone cancer locations visible with a lump or bump?? I haven't seen a picture of the lump/bump and it would be great to be able to compare... take care, freddie

[brattygirl]

First of all thank you for responding ,no there is no lump or bump to show, I saw the oncologist and she is refering me to an orthopedic oncologist but she says I will be seeing her also for the primary site when they find it. I have been for blood work, 24 hour urine collection, cat scan of the chest, abd. and pelvis and I go for a brain MRI tomw. I see her again on friday the 16th of this month to find out if anything was found. The bone biopsy and the needle biopsy were cancelled due to some tecnocality (spelled wrong lol) and they are trying to get my insurance to get prior authorization for me to see the orthopedic oncologist. This is defintly irritating , when you need to see someone or have some test done and the insurance company wants to give a fight. what happened to the days when a Doctor says you need and you get. I am in pain and it seems to be getting worse everyday , its to the point im sleeping in a chair because it is to painful to in bed at all and I have made a splint so it is semi stablized from being used. Im just not sure who to talk to about it and the medicine they have me is crap and dosent work (hydrocodone), primary care ? oncologist ? orthopedic ? or do I need to wait for the referal to go through to see the orthopedic oncologist ? I am so confused with all of this.

[fastfreddie]

Hey Bratty,

If you're new to the whole C thing, you really need to get legal sized folders made for each Dr. and write your questions/date/responses/notes neatly and keep records of each of your visits in the folder.
Actually, write the appointment dates on the outside folder itself for quick referrence.

You need to do this for your insurance(s) as well... my first C operation bankrutped me after my insurance denied the claim, even though I had prior authorization before the operation. If you've never dealt with insurances at this level, you're in for an eye opener!

Anyone of your Dr.s can prescribe something for pain, but you want to make sure they're all aware so you aren't double dosed, or have any precrip that aren't compatible with each other. Use good adjectives to explain your pain level, wait.... they only understand the 1-10 scale... :)

Thanks for the reply on no lumps for the bone cancer. I couldn't seem to find an image of one.

I gotta get something to eat....!!!

fastfreddie

[vikkistn]

hi im vikki, my mum was diagnosed last week with the same as yourself, the secondary cancers are in her spine and her lymphnodes( Glands that runs through our body). Like yourself they are unsure of the primary source and now are not looking for it as it is so advanced. She has had Radiothraopy for her spine then a course of chemotherapy which lasted, 5 days for radiotherapy and a 4 day intravenese drip of chomotherapy. She got home today thank god and is very glad to be there.
Its really just the word that frightens us so much but so much can be done, stay strong and a positive mental attitude is 50% the battle (trust me, i know its hard) but faith goes along way. i myself am also stuggeling to deal with all this but would love to hear from u and hear how you are doing and be brave.My best wishes vikkix

[brattygirl]

hello Vikki and Freddie , alot has happened since I last posted, they finally got on the ball and got things moving, the oncologist scanned my chest, pelvis, abdomon all which were normal (yeah), they are looking for primary cancer. They did a brain MRI,skull x-ray and the bone scan shows something on the right side of the head but they dont seem to be concerned about it , I have mentioned it and asked about it , I dont understand the MRI says I need a brain CT done and I have been having bad headaches , dizziness, blurred vission, memory laps and pressure in my head long before any of this cancer stuff even started . meanwhile I was in the hospital for 3 days as the regular oncologist sent me there throught the emergency room for the pain hoping they would admit me and do the bone biopsy that way since it was taking so long to get into the othopedic oncologist because of my insurance, by this time im very limited as how much im able to move the left arm at all. they admit me for 3 days and give me pain meds but no ortho doctor will do surgery on me they say I need a special dr and there are only 3 in the state. I got discharged and I finally got an appointment into the one I needed to see , I saw Him and he scheduled a bone biopsy for december 18th a x 1:00. YEAH.
now maybe we can get somewhere........... will post when I know more my follow up is after christmas , so I wish everyone a wonderful christmas and a happy new year . be safe brattygirl

[brattygirl]

vikki I am sorry to hear about your Mum you all will be in my thoughts and prayers
best wishes to you and your family as well and thank you xbrattygirlx