Bone Scan Land and Metastatic Cancer

The report from my bone scan made it's way to me last week by way of a casual conversation with my primary care doc who called to see how I was feeling. While we talked she said she'd heard from the oncologist I saw once and abandoned.

Turns out she'd also gotten my bone scan report. Of course I promptly pushed to get results and she's pretty straightforward with me. It's a good relationship and I appreciate her candor.

That's about the last of the good news for now.

Turns out that two area of bone are either deteriorating (some of that could be age) or the breast cancer has metastasized and started growing in one or both areas. That sounds like a bad news / worse news option. For some reason the bone has some areas significant enough to warrant concern.

It doesn't come as a shock so much as it's a blow that I hoped to avoid for awhile.  Invasive lobular breast cancer isn't known for staying put but I'd hoped I could finish reconstruction, try to get some help with the overwhelming exhaustion, and work with the Frozen Pea Fund on increasing knowledge about cancer and funding some worthwhile projects for a few years before tackling my next round of questionable news.

On the other hand it explains the pain in both chest and lower back that I've been blaming on chest wall expansion and a back injury from my teen years.

Unfortunately I'm stuck not knowing more until I can get an MRI. That can't happen until the chest wall expanders come out. They contain metal and that's a no-no for going through the MRI machine unless I want to chance them being magnetized right through my chest wall. No one wants blood on the MRI machine apparently.

So when my second surgery is done, expanders out, new boob built, I'll see how quickly I can finagle a spot in the MRI tube so we can perhaps find out what's happening in the bones.

My next appointment with Doctor Chang at George Washington is on Friday to discuss surgery he thought should be the first week in June after the current expansion has time to rest a bit. I'm going to try to jar him lose from that estimate and hope to move it up at least a week - maybe more. I'd like to be able to get going on diagnostics.

In the meantime I'm reading up on treatment for breast cancer that has moved to bones. My reading reinforces what my understanding that it does not then become bone cancer, but in fact remains cancerous breast cells but moved on to a new host and growing in bone, taking over where bone cells should be.

Sometimes we need a shove to get us - OK me at least - to move off Start to  Action.

So while I'm at it, getting a clear diagnosis is also time to think about stabilizing the bones in my lower back. Whether it's because of cancer or deterioration its a lot more painful to stand in the past couple of years. And something there has to get fixed no matter the cause.

The injury in my teens means that issue is something I've been dealing with for about forty years but the pain and immobility has been increasing in the past seven or eight and severely limiting in the last two or three.

I'm taking it pretty well. Not sure how the family is except in waiting mode. If you weren't along on Gone Nuclear - Full Body Bone Scan Day you can go back in time via this video, or check some of the links to learn more about various topics. being informed is not a bad thing.

• Metastatic Cancer: Q&A - National Cancer Institute
•  Merck Manual - Everything You Need To Know About Cancer -
  this has wonderful detail but is a very layman friendly guide

and if you're still reading after that, delve into interesting possibilities

• Scientists Investigate Treatments for Breast Cancer That Has Spread to the Bone
• Sloan-Kettering - Molecules Can Block Breast Cancer's Ability to Spread to Lungs and Bone

 

 

Comments

[Ontario Emperor]

When I first read this on my mobile phone over the weekend, it was depressing (as I'm sure it was for you and your family), but the Imaginis article did offer at least a glimmer of hope. I assume that's where you're at now - researching, looking for the hope that is buried in the medical reports. My prayers continue to be with you and your family.

[Brian Walin]

Hi Susan!

I was wondering why your doctors wouldn't have you do a CT Scan with contrast now (I'm not sure if the dye is only used for soft tissue)to look for cancer in the bone. I don't think there is a concern wearing anything metal with a CT scan. I've had both MRI and CT and don't remember anyone caring about having metal like they did with the MRI. My doctor prefers the CAT anyway.

I'm sure the xanax wouldn't be needed if you didn't have such a heavy unknown facing you. I hope it's just a false alarm. I'm sending good thoughts and hugs your way.

Brian
http://beyondtheglassdoor.blogspot.com/

That's a good point, Brian. And I'd ask . . .if only I currently had an oncologist. There's just too much to learn for someone who wasn't focused on doing anything but treading water and staying in place.
I feel a real lack of confidence in the abandoned oncologist so she's out for questions or anything else. And my GP defers all cancer questions to someone more qualified than the is - so I've got zip right now.
Tomorrow Dr Isaacs at Georgetown U Hospital's Lombardi Center reviews my file to see if she'll take me as a new patient. If not, I'll ask my reconstruction guy, Dr Chang at GW, if he can rope one of his oncologist friends into taking a look.

[Brian]

Don't be too passive...let them know this is your life they are dealing with! I had SEVERAL occations where things went wrong.

I even had a situation where I walked out of the hospital and told them to call me when they got their S**t together. Mostly smooth sailing after that.

Do you know Jeanne Sather? She writes a blog under "The Assertive Cancer Patient." The title is mild compaired to how I see here as a patient.
Check out her page. She might have some good advice for you too.

http://www.assertivepatient.com

Brian

[debutaunt]

I was in an actonel study at MD Anderson in Houston when I first started treatment. It was to study the effects of chemo on bone density. Before my transplant, after 5 rounds of chemo, I had lost 9% of my bone density. After transplant (major chemo and 4 days of full body radiation), there was even more loss due to chemo, steroids and radiation.

I did have some herniation in my discs and some deterioration as well, but fortunately I was an athlete for many years and still have pretty strong bones. But it showed me that the treatment they used is pretty rough on yer bones! My doc told me that he sees 30 year olds with the bones of an 80 year old. Osteoporosis at very early ages.

I also agree with Brian. Jeanne is a friend of mine (I saw her a few weeks ago on my Seattle trip). She's an amazing force of nature and has excellent advice. She's been dealing with her cancer for about a decade I think and she's so knowledgeable on many topics.

Anyway, I'm praying for you (I heard of you from my sis, @Michelle_greer) I'll be keeping tabs. Hugs from Tejas.

[Cathryn Hrudicka]

Susan, you know we are so with you, no matter what course of action you take. You have been extraordinary in setting a great example for not only other cancer patients facing such tough decisions and unreasonably long waits caused by our medical system, but for all of us. You show us how to be yourself, be authentic, be bold, and yet, fully human, in going through a really tough challenge in life. I hope you're getting enough support to cry, get angry, be scared and vulnerable when you need to. You don't have to be strong all the time.

Huge hugs and love always,

Cathryn (and Richard, aka @Marantzguy on Twitter)

[Sharkey]

Found my way here via Debutaunt's site. I'm a two-time breast cancer survivor. Several months after my recurrence, I had some spots show up on a bone scan too. We did a CT scan that showed no changes from the previous one, and a month later we repeated the bone scan. The spots were gone--it wasn't cancer.

I don't think my oncologist has ordered a bone scan since, and that was over five years ago (I do regular CT scans though). He says they're too sensitive--they can show increased activity in an area where you have a bruise.

So hang in there--don't lose hope!

[jeanne Sather]

Hi Susan--Came here from Dubutaunt's blog ... I don't give advice, but I'm happy to answer questions about living with bone mets. The good news is, if your breast cancer HAS to spread, you would rather have it in your bones than in some of the other places it could go.

My cancer went to my bones more than six years ago, and I've had Herceptin, zometa, hormonal therapies, Avastin, Taxol, Navelbine, oral cytoxan, and now Tykerb. Most of the time I've gotten a combination of two or more drugs. The targeted therapies like Herceptin, Avastin, and Tykerb are definitely easier to tolerate than the conventional chemo drugs.

Also radiation several times to specific sites.

So if you have questions, shoot them my way. Happy to help,

Jeanne

[WhyMommy]

Now is the time to get pushy. All of us IBC patients go metastatic, if we live long enough, so I've done more reading on this than I would wish for. You're doing the right thing by looking for a good, agressive oncologist. Many women live for many years with metastatic cancer, but you have to get back into treatment, my dear.

So email that new oncologist, and tell her your story in brief. Tell her your passion for advocacy, and that you want to survive to accomplish your goals. Tell her that you have a beautiful newborn grandchild. But most of all, tell her that you need her expertise and are grateful for her time. She's a good one, and I'd trust her with my life.

Oh wait, I did.

You can do this, Susan. I know you can.

[Cathryn Hrudicka]

Susan, there are so many good and helpful posts here—I'm seeing Jeanne and WhyMommy's thoughtful encouragement to get pushy and get into treatment ASAP with the right oncologist, not so easy, but essential to pursue.

I want to add that I've known several women who have survived breast cancer and have been living well for years. I also had an incredible friend whose breast cancer migrated to her bones and other organs, and she survived for at least 10-12 years after it went metastatic (maybe longer, I would need to check to find out exactly). In her case, I know the loving support of her husband, a careful diet, meditation, goals, exercise when she could, rest, and a passion to live kept her going for so long.

Prayers, hugs and meditations for you to get to the right doctor and resume treatment as soon as possible.

Love,

Cathryn & Richard