Advice/ Help for a Newbie with Bone Mets

melb44

Hi -

I has hoped to never join this forum. I had breast cancer in 2015 and had chemo, lumpectomy and radiation. I had been having pain in my hip and pelvis for other a month and thought I had broken a bone or torn something. I had an MRI this morning and it is Bone Mets in my hip and sacrum.

I have a call into my oncologist and I am guessing I will need a full bone scan. My mom is convinced I should fly to MD Anderson to get a second opinion.

Any suggestions about getting a treatment plan etc? Things you wish you would have know when you first found out about the bone METS?

This is so overwhelming.

Chicagoan

Hi Melb44,

Sorry you have to join us here but you'll find good company and plenty of support. The days when you first get diagnosed with Stage 4 are so terrifying and confusing. The resident who treated me in the hospital was worried that I would suddenly become paralyzed due to spinal mets and immediately ordered a radiation consult. I started radiation before I had my appointment with my oncologist. In retrospect, I would have skipped the radiation and went right on to systematic treatment. I don't think the radiation really helped me; the systematic treatment seemed to be what healed my bone mets. That's just me-others may have different experiences. Take a deep breath-at least you already have an oncologist in place. Get a second opinion if you want but don't feel that you have to succumb to the panic of other people.

Best wishes.

LoveFromPhilly

Hi I second Chicagoan's sentiments about taking deep breathes, and trying not to panic - nor succumbing to other's panic (which there can be a lot of!). I am sorry you have joined us but yes, tons of amazing support and information here.

A couple more positive notes: bone mets is treatable. I had severe bone mets and now, with the treatments (which are not terrible) they are gone and I am stable!

It can take a while for the treatments to start to work, so you have to be patient.

Do what you can at this time to take your mind off it - enjoy life to it's fullest, eat what tastes delicious, get fresh air, be around loved ones, laugh if you can, cry when you need to, vent away to us and to who you feel safe with listening.

Just know this is not a death sentence. People live for years and years with this disease.

I was diagnosed de novo last year in April and I was in complete shock. I had no idea what to ask or what to think! I always brought someone with me to my onco appointments and we took tons of notes. I would just say that you get to participate in your treatment decisions. Take some time if you need it to research the medications they are recommending and feel free to post those recommendations in the Bone Mets thread here and we can all help give our non-medical advice feedback about our experiences.

Sending you a big hug,

Brenda

LoveFromPhilly

Melb here is the link to the Bone Mets thread: https://community.breastcancer.org/forum/8/topics/789492?page=753#idx_22561

pajim

MelB44, welcome (back) to the forum! So sorry you have to be here. Yes you are filled with fear, loathing, sadness, etc. This will pass.

The first thing you need to do is see your oncologist. I would guess (as you do) that they will ask for some imaging. CT or PET and or bone scan. This is to provide a baseline for when you start treatment.

Don't be surprised if they don't want a biopsy. You have what my onc calls 'classic' presentation for ER+ women. Bone mets. Me too. They will assume that you are still ER+ and you almost certainly are.

Ergo the treatment will be letrozole (Femara) with or without Ibrance. Plus, if you're pre-menopausal, ovarian suppression. This treatment is pretty easy for most women. Your experience may vary but it's 'generally well-tolerated' (see my rant against that term on another thread) You may or may not need radiation or something if you are in danger of breaking a bone.

If you want a second opinion go right ahead. It's a very common thing to do and if you're nervous about your options might help you. You might want to know what plan A is first?

I promise you that six months from now, when the bone mets have melted away from treatment, that you'll feel better than you do now. Edited to add -- make sure you get whatever pain/sleep/anti depressant meds you need to get you started. It's not forever. [I took sleeping pills for three months when I was first diagnosed six years ago]

meg8000

I'm going to join you here too, Melb44, as I just got same diagnosis today when I got my PET scan results. Looks like mets in several places in bones only, with an area of suspicion in lung. The PET scan was ordered by orthopedic surgeon after pathologic fracture found in humerus, along with abnormal bone marrow found on MRI and CT. Have an appointment with Oncologist on Thursday. Original breast cancer was in 2009.

Utopria

Mel B and Meg8000 - So sorry you guys have joined this club. No one wants to be here, but you have come to the right place for help, support, and finding others like you. I too was diagnosed with a single bone met to the spine after Surgery, chemo and radiation in 2014. Its been a month and a half. My sisters over here told me to take it a day at a time and breathe!

My onc, also told me to do myself a favor. He said please don't do anything impulsive. The human brain has an amazing ability to adjust to severe news like this. Give it two weeks. Go about your life as normally as possible. I think it was sound advice. My first impulse was to quit my job, but I'm glad I didn't..

I also have been getting a second opinion at MD. It just makes me feel better that I'm having two different approaches. I also went to MD to do a single treatment of SBRT (Radiation) on the bone met. Awaiting my next scan in mid January. I hope that will be the end of the bone met for some time...keeping fingers crossed and praying...

Hugs to you both. Sending healing and strength at this time.

DivineMrsM

Melb, sorry you have found yourself coming for advice on bone mets. I was diagnosed with bone mets in several places, hip, rib, scapula. That was in early 2011. I actually consider that it was present the day I felt the lump in my breast, December 22, 2010. So you can easily see doing the math I’m about to round the corner on 8 years of living wth mbc and head into a ninth year. I had the big treatments in 2011 and remain stable on Arimidex.

Good advice already given here. And like I said, I view this as livng with metastatic breast cancer,not dying from it. It should help once you get a treatment plan. Best wishes to you.

melb44

Thanks everyone for the responses! I really appreciate hearing from people who are in the dealing with this. I am starting to calm down a bit. This whole thing is so scary though. Inhave been reading the bone mets thread and it is so helpful to hear everyone's experiences.

Meg8000 I am sorry to hear that you are in the same situation.

I got a bone scan today with these results.

Evidence of a large destructive pathology in the LEFT posterior-medial
iliac bone and lateral body of the sacrum with additional smaller lytic
pathology in other locations of the sacrum and iliac crests.

I have a CT of the chest, abdomen and pelvis tomorow. I guess I will find out then whether it has moved to any other organs.

sherry35

Hey there, I too joined this club almost 2 months ago with lymph/bone mets after many years of being NED. Original Dx was 2007. I am still trying to wrap my head around it all but my mind is in a better place than it was just weeks ago. Hearing that my tx is a slow starting drug over and over really helps because I am not a patient woman! I trust that this is the best course of tx for me at this time and I also know that there are other options if this doesn't work. Sometimes I forget to breathe and reading all of the inspirations and positive outcomes on these threads really helps.

Wishing you all peace and love on your journey!

Cheers,

Sherry