Yep, I believe here I go again :(

mdempsey96

Hello Ladies,

A little history - I was diagnosed with IDC Stage 1 Grade 3 in 2008 at the age of 35. I had a lumpectomy, chemo and radiation. I'm now taking Femara and have been for over 5 years. About 3 months ago I started having severe pain in my left rib area. Went for a x-ray and nothing. Then went for a bone scan and it showed a sclerotic lesion on my 6th rib. Sent me for a CT guided biopsy and the radiologist didn't really see it so no biopsy. Follow up in 3 months. Fast forward to now. Had a CT scan last week and it showed 3 spots on my ribs - 2 more from November scan. Dr. tried to get a Pet Scan but insurance wouldn't pay so another bone scan this past Monday. I now have a lesion on my T6 in addition to the 3 on my ribs!!! I'm freaking out that it seems to be progressing quickly. Dr is setting up a biopsy. She told me she was very concerned that my breast cancer has spread to my bones. What now???? What happens next??? Any input would be greatly appreciated!!!

KBeee

I am so sorry you are facing this. I hope you get the biopsy quickly and have a plan in place soon. If you hop over to the bone mets thread on the Stage IV froum, those fine gals will be able to give you really good guidance on what to expect next. ((HUGS))

wallan

I also am very sorry you are dealing with this all again. It is a shock when you find out, especially after so many years of NED.

I don't know about your particular case what to expect, but I do have positive news about two survivors I know personally with bone mets.

One found out about 5 years after early stage 1 er+ node negative BC that the cancer had spread to her hips and thighs. She is on tamoxifen and has been for 10 years and works and travels and lives a completely full, normal life. She is a customer of mine.

13 years ago when I had my first bout of BC, I briefly joined a BC support group that I attended near my home. One of the women there had bone mets for 13 years and was working and traveling as well.

Let us know how you are doing.

wallan

TarheelMichelle

mdempsey, there's no reason for denial of a PET scan after two CT scans. It's the best way to see where cancer is and how active it is. Your doctor is supposed to APPEAL the denial from your insurance company. If this is a problem, you should find another doctor. You need a doctor who is ready to demand what you need. A PET scan is a standard diagnostic for metastases. (I get one every 3 months.) Your insurance company knows this and so does your doctor.

It's helpful to have the CT scans done at the same hospital, on the same equipment. I learned this the hard way when I had a CT scan at a different hospital because of some pain issues and the report said I had cancer in my liver. Uh, that was wrong. Humans make mistakes and scans capture images of your body during a single point in time. It's possible that the cancer isn't spreading quickly but instead what was seen on second scan was not visible during first. These are possibilities.

Don't worry about your bones. You won't die from those spots on your bones.

I was in a similar place as you, when my cancer metastasized. When I heard that I had cancer in my bones, I thought I was going to die very soon, like in a month or two. (!!!) It took me about 6 months to calm down and tell myself I still had living to do. That was five years ago. You have had 9 years pass since you were first diagnosed. That's a good sign. Many new and effective treatments have been introduced. Oncology specialists can help you manage yours.

First things first. Get a PET scan.

You have a strong community here to lean on and refer to.

I hope my comments help. I'm not trying to tell you not to worry; that's only natural. Don't give up on yourself yet.

Wishing you many happy years ahead.

mdempsey96

Thank you so much for replying. Talking to you guys gives me new hope. I now have a new problem. I have 3 radiologist say they will not do a biopsy. Too risky, too hard to get to and too small. I know the only way to find out if it's cancer is a biopsy. I have a MRI today on my spine to check the spot on my T6. Has anyone ever had a doctor say it can't be biopsied? After the MRI she will probably refer me to Vanderbilt.

dtad

Hi mdempsey96....so sorry you are going through this. Just want to say IMO being treated at a major university teaching hospital is paramount. I don't know where you live but if you are close to a major city you might want to check it out. Hopefully you are already there. Good luck and keep us posted.

proudtospin

mdempsey, i was having seriou back pain and had a tom of mris done, at one point they saw a small tumor at the top of my spine. One doc was thinking about hydrocephelus but thought he needed to do a biopsy and said my spine was way too messed to touch. I ended ip going to a major teaching Hospital and they gave me revised correct diagnosis.

End of story is i had successful surgery for hydrocephelus this past nov, no cancer on the spine