Ranting over bone scan results

BBK

4 years' ago today (11/22) I was diagnosed with bc. Had a mastectomy and tram flap recon in Jan of 2003. Started chemo (AC) in March of 2003, finished in May. Started tamoxifen in June of 2003...still on it. Chemo-induced menopause. I suffer from major hot flashes/sweats -- literally every 30 minutes round the clock. I don't sleep well because of them. Also, developed Type 2 diabetes following chemo. There has been ongoing study of my liver and kidneys (my liver panel has been elevated with each successive blood work up, and I've had a UTI and a kidney infection in the past 6 months). 3 years' ago, my right hip started bothering me. No firm diagnosis. But, pain on a daily basis -- can't sit, stand, lie down, drive or walk without pain. Constant, throbbing, intense pain in the joint, groin, and outside thigh area. Then, a month ago, I started getting pain in my lower right rib, and in my left shoulder blade. It hurts to touch, and aches much of the time. So, at my 6-month check with the oncologist this month, she ordered a bone scan. The results came back yesterday. My scan lit up like a Christmas tree, with "hot spots" at all the locations I've had pain and then some. They tell me it's not cancer, but they think it's arthritis. I'm having trouble with that, as with most of my health issues. Up until I was dx-ed with bc, I was a very healthy (although somewhat overweight) person -- I have been physically active through my life, and healthy -- didn't really have much of anything worse than an occasional cold. I have NO family history of bc, diabetes or arthritis. But, now, in the course of 4 years surrounding my dx of bc, I'm falling apart. Should I trust the results of my bone scan...or what? I thought arthritis was in joints, and some of my "hot spots" are just on/in bone. I don't understand it. not sure where to go from here. I can't live with this debilitating pain all the time. It's ruining my life. I try to push through the pain so I can continue to work. But, at home...I'm on the couch with the heating pad most of the time. And, sleeping? Forget that! My doctor doesn't really listen to me, and if she does, she's not very helpful in advise and so forth. I just can't continue with this level of pain in my body. I don't finish tamoxifen for another year, and then she's talking about femara for another 5 years... Advise? Thoughts? Anything?! Thanks!

Susan956

Sounds like it might be time for a second opinon. If you don't think your onc is listening to you.. then time to try someone else. Arthritis can be very debiliatating and it doesn't always follow family history and the good part about is that it can go into remission. My Dad about 17 years got Rhemetoid arthritis. It was so bad that he barely could move and his hands were gnarled.... He took a chance on several Drug trials and amazingly after about a year and half struggle it went into remission. He now 15 years later, plays golf and is in good health. He is now 78 years old. So if it is arthritis, go to a specialist for it. They do have treatments and they should be able to work with you on your pain.

Take Care... God Bless...

((((Hugs))))

Susan

kathydaly

Boy, I just don't get this oncologist, at all.

I can tell you that the "HOT FLASHES" I experienced on tamoxifen were baddddd. Not as often as you, about 25-30 a day. Some of that got relieved by drinking water all the time. Made sense, all that perspiration, my body needed the water replaced. In the past year my liver numbers have been slightly elevated and my oncol. is all over it w/regular extra testing.

This bone scan, I believe needs another oncol.'s eyes scanning the scan , other than your current one.
I'm sure arthritis is involved, me too, but the rest of it makes me question why she is soooo out of touch w/her patients, and unwilling to address all of the issues, the pain(go to the pain clinic, at the hosp., ask her for a referral) you cannot continue to live w/that level of pain. I had a breast surgeon who told me to see a shrink when I told her I still had pain 3 weeks after surgery (2nd time), she didn't believe me. I asked for a referral to the pain clinic and it has helped enormously! And why is she putting you femara w/out a recurrance. Tamoxifen for 5 yrs here and then I was NED, if there is evidence of disease, and that's why the femara, then say so. Where do you live, do you have other choices in terms of hospitals, or a teaching hospital. I think 1st and foremost get to the pain clinic, then get 2nd diagnosis, obviously bring the bone scan. I've had several hot spots too, but i had broken several bones and it was always about one of them, and they were also about arthritis w/pain. I was not put on an any of the AI'S until I had my 2rd run-in w/the beast.

So, sweetie, those are my thoughts, my advise and experience's I can share w/you, until later, prayers and huggs, Kathy

KathiM

Sounds very wierd, but have you changed your eating habits since your fighting with the beast??? I did, and I must say I feel pretty good. Because of my colorectal cancer, which rendered me lactose intollerant and forced me to basically an IBS diet...low fat, high fiber, no fried stuff (well, cut back, anyway) I have escaped some of the expected side effects. I also exercise, which helps my osteoporosis (a gift from the breast cancer chemo). I, too, am on Tamoxifen...have 1 hot flash daily, if I'm lucky...but I am 51 years young, so my body's estrogen was headed down way before my hysterectomy (also courtesy of the rectal cancer).
I also take Actonel weekly to increase my bone density...If I don't, along with calcium supplements, my bones ache, too.
I don't know if something as simple as diet can help, but it is worth a shot! And if you have already done this, well, just ignore this message!!!

Hugs, kathi

mc2001

Hi BBK,
You may want to see another physician or surgeon. Your current doctor is not treating you properly. She should be much more concerned about your current status. As for the pain, have your Dr refer you to a pain specialist if you haven't already. There are many ways to treat pain. A specialist may be able to find a way that works for you.
God bless.
-Michael

24242

BBK,
Quite frankly I have never heard of a bone scan lighting up like a Christmas tree before without that meaning some bad news. Yes grey areas show up that are areas of bone degeneration and to make matters worse this can be a side effect or direct result of our bodies reaction to the treatments we are given. Side effects can be dibilitating for some of us and others fly through like they weren't even having it able to work and function in society. Some of us are very sensative to everything they do to us including surgery causing nerve damage and other things like just plain trauma to our bodies. I am tired of people having to suffer...
I think I know a thing or two about RANTING and never stop trying to be heard. YOU now know your body better than anyone else and even though it maybe just arthritus there are many things that can be done to help us gain the QUALITY that is necessary to continue on in our lives.
I agree about second opions because that is something I never really did and won't hesitate next time.
Love you,