Worried😔

[Bubba_6]

I don't understand anymore! I'm finishing radiation for breast cancer. I just had an mri of my back and head, also pet scan and bone density. The lesions are on my vertebra T11 and 7 more. Now my oncologists who's treating me for radiation wants a biopsy for my back. He says he's confused cause the tumor on my breast shrunk but the one on my back grew. I don't know what to think. I'm tired and stressed.

[Tinydancer1]

Of course you’re worried, but you’ll go ahead and get the biopsy and find out what’s going on in there. And you’ll ask lots of questions directly to your doctors, and you’ll get second opinions if they’re not answering your questions or if they’re recommending more treatments that you’d like to double-check that they’re the right course of treatment for you. It’s a tough road to travel, but you’ll walk through it, and we’re all holding your hands as we walk beside you. Please let us know how you’re doing as you travel down this road.

[Kats2]

Hi Bubba-6,

I also had what was thought as early Stage BC. I had a lumpectomy and radiation. A year later metastisis was found in my spine, ribs, and pelvis. To confirm that it was BC that had metastisised to my bones and nothing else, I had a bone biopsy in my hip area. I was confused by this but it was the safest area to do the biopsy. An interventional radiologist did the procedure under local anesthesia. All went well and it confirmed that my BC had traveled to my bones.

Having a biopsy in your back is very dangerous! This was told to me by 2 anesthesiologists. Unless your doctor is a neuro surgeon, I wouldn’t have anyone fool around with the vertebrae of my back. I was told that paralysis could result from going into your back. I thanked God that I was led to the right people/doctors who knew what they were doing.

Of course your tumor in your breast shrunk! It was directly radiated thereby shrinking it. The lesions in your back are most probably from your breast cancer. But don’t get a bone biopsy in your back!!!

Did you have any lymph node involvement? What does your Pathology Report say? I had one out of 7 sentinel nodes come out positive. No treatment was given to me, when I should’ve been treated for BC spread. I left this Cancer Center promptly.

After the bone biopsy confirmed that I had bone metastisis, my new Oncologist, near my hometown, took over and started me on treatments that are keeping the cancer in check. He said that he would “Watch me like a hawk,” and that’s exactly what he’s doing.

Bubba, get a 2nd opinion. An MRI will show the interventional Radiologist where to do do your vertebrae biopsy SAFELY. There’s got to be another area where they can do it, not the spine!

I speak from experience. Good luck with making the right decisions. You won’t regret getting more input from other Oncologists.

Keep us posted. Also, are you on any medicines or chemo of any sort? I’m on oral chemo in pill form.

I’m truly surprised that your Radiologist is “confused.” Even my regular Primary doctor suspected metastisis. I say get a more experienced doctor. Never rely on someone who’s “confused!”

Sending you healing light and prayers. Kats2

[Bubba_6 in reply to Kats2]

Thank you so much for the information. The oncologists requesting the biopsy is the one that is giving me the radiation. The radiologist and my regular oncology doctor is refusing the biopsy due to they told the oncologists radiology that the mrii's showed it is cancer ,so he's refusing to radiat due to he wants a biopsy done.

[Kats2]

Bubba-6,

Did you ask your Oncologists WHERE they will do the biopsy? Meaning on your body. Did they tell you that? A bone biopsy should NOT be done in your spine.

Of course the MRI showed cancer. What needs to be found out is if it’s breast cancer that has traveled to your verbrae or spine area. Sounds like it has. It could be a different cancer. That has to be ruled out.

What you’re being told is very confusing.

I have extensive bone mets in my spine, ribs, hips, and pelvis. I am NOT being treated with radiation to these areas. There are too many places to radiate.

I am being treated with oral chemo drugs plus Zometa as I explained earlier. I take Ibuprofen for pain. If I get worse, my pain meds will be stronger.

Your Radiologist is being wise in not wanting to proceed with radiation treatments until he knows for sure that he’s dealing with Metastatic Breast Cancer in your vertebrae.

Do some research on this. Better yet, get that 2nd opinion. It sounds like your doctors have conflicting views on what to do for you. That’s not a good sign.

Get another pair of eyes to look at your case. And PLEASE don’t let them do a bone biopsy on your spine! I’ve read about a woman either on this site or another one who is now unable to walk because a biopsy was done on her back.

Having back surgery is a whole different matter as a neuro surgeon is the one who has studied this field intensely and is able to operate on the brain and spine.

Don’t be hasty and rush into this biopsy business unless they choose a safe area on your body to do it.

Ask if an Interventionalist Radiologist would do the procedure. These are the people who do bone biopsies on a regular basis. I was happy I had that person do mine and it confirmed breast metastisis to my spine.

I could’ve had Multiple Mylenona which has a lot of the same characteristics of breast cancer mets and this had to be ruled out before I got any treatment at all. So yes, you need a bone biopsy. Just get the right qualified doctor to do it. Be safe, not sorry.

Please write again telling us what decision you’ve made and who’ll be doing your biopsy.

Much good luck and prayers sent out to you.

Kats2

[Bubba_6 in reply to Kats2]

Thank you kats2 for all the helpful information. I will advise you what happens.😇

[Kats2]

Bubba_6,

I just re-read your first post that says your regular Oncologist is REFUSING to let you have a bone biopsy because the MRI shows cancer in your vertebrae. Frankly, for an Oncologist, he’s NOT following protocol. My Oncologist upon looking at my MRIs said, “ You need to have a bone biopsy to confirm that this is NOT a different type of cancer.”

Even though he and my Primary doctor “ suspected” that it was BC metastisis, they INSISTED that I have a bone biopsy to absolutely confirm it. There was always that chance that it could’ve been a different type, or secondary cancer.

If I were you, and I’m not, I’d be looking for another Oncologist. Yours doesn’t seem to know what the proper procedures should be done for suspected BC metastisis. You can even find this info on the net. WebMD.com

He and your Radiologist should both agree on the next step for you. They need to be on the same page and not leave you making a decision. You’re not a doctor, never mind an Oncologist!

Your Radiologist is making the right call. Not your Oncologist. I’d definitely start looking for a 2nd opinion AND a new Oncologist. Amen. Kats2

[Abshobha2709]

Hi even I was BC stage 4 with vertebra 4 was effected doctor adviced only chemotherapy. I have gone thru 7 chemo and now my reports are normal. I m only on oral pill letroz daily and weekly vitamin tablet and zolendronic injection for bone strengthing one every 3 months. I had also take the fruit soursop which really helped me

[Cu4281]

🙏🙏🙏 Good Luck - sending you healing thoughts

[PJBinMI]

Hi, Bubba,

If I were in your shoes, I would want a sit down with my onc and I'd take a list of questions , and probably a relative or friend to be a second set of ears. One question I have for you is whether or not the mets to your spine are causing you physical pain or discomfort. If not, you most likely have time to explore options, get a second opinion from a bc specialist oncologist, give non-radiation treatment time to work, etc. It's my understanding that radiation for bone mets to vertebrae is generally only done to relieve pain and not as an early treatment. The bone drugs like Zometa and Xgeva help bone mets heal as well as strengthening the bones to prevent fractures. Bone mets are a big trickier to track with scans than soft tumors in organs like the liver and lungs. If you have been on some systemic treatment, like chemo, or hormonal treatment or one of the meds for her2neu positive bc, it would be a bit unusual for the lesions in your breast to shrink and the bone lesions to grow, but not unheard of. That could explain your onc's use of the term "confusion" and I would not read too much into that. Getting an appointment for a second opinion evaluation from an oncologist who treats only breast cancer is always a good idea when cancer has spread. Your onc should be helpful about that. The top tier of cancer centers in the US are those designated "Comprehensive Cancer Centers" and those are listed by state on the website of the National Cancer Institute. They have bc specialist oncs who both treat patients and do research and are real experts at treating those of us with mets. Insurance will generally cover the cost of this. When I had my second opinion eval at the CCC at U of MI, I saw a bc specialist onc, and my pathology slides were examined by either two or three of their pathologist. I spent a whole afternoon there and saw a "fellow," a MD in training to become a specialist onc, and a medical student before meeting with the onc specialist. My husband and grown daughter went with me, and I could feel their anxiety lessen as the onc talked with us. She was very reassuring that I was not at death's door and had years left and good treatment options. I hadn't really felt like I needed a second opinion--I really like and trust my local medical onc--but it was very worthwhile and I encourage anybody with metastatic disease to do it early on and as big decisions are made. I hope you will get your questions answered and that you will be able to move forward with treatment with confidence and peace of mind.

[Bubba_6 in reply to PJBinMI]

Thank you so much for the information. I'm currently on levetrole and ibrance with zometa once a month. I called and asked if I had her2 positive or negative. Funny part when I called nurses were like wow thats new to us. Finally got my answer and I'm positive. So now I can research it better.

[PJBinMI in reply to Bubba_6]

With a cancer that is positive for both hormone receptors and her2neu receptors, you have alot of treatment options, and what you are on sounds very standard to me for a woman with an E + bc and bone mets. Zometa and the other bone mets drugs have been true miracle drugs. People with bone mets used to eventually have alot of fractures and would end up bed ridden and then would develop pneumonia and die from that! But these meds really reduce the number of fractures and now those of us with bone mets only have more longevity. If you want to, you can ask for copies of the pathology reports from biopsies and the written radiology reports. Some oncs ask that we don't receive copies until we have had a chance to speak with them first, but I have found that for me, my time with my onc is more productive if I have test results a few days before my appts so I have time to think about whatever is going on and have better questions for the oncs. I have been seeing the same oncologist the whole time I've had this cancer, but for the first ten years plus I saw her at the cancer center in a fairly good sized city. The oncology nurses there knew alot and were super helpful. Now I see my onc at a small town hospital that has a cancer clinic where she is the only onc. The nurses there are very nice and well meaning but they have alot less experience with cancer and just don't know as much. But my onc is in her 60s and has cut her work hours back and that is the only place she sees patients and it's definitely worth it to me to stay with her. I was driving about 1 1/4 hours each way, now it's a bit closer to 1 3/4 hour each way. It's been interesting to see such different treatment facilities. The smaller place has a very happy feeling to it. The cancer center was more clinic-y. Pros and cons each place And I get my Faslodex shots at the other small town hospital 3 miles from my house. lol

[Bubba_6 in reply to PJBinMI]

My oncologist is in her late 30,and I have to travel 1 1/2 hours to go see her. I live in a small town and our hospitals are 30 minutes away . To go to a good hospial it's almost 2hrs. So I don't have much of a choice. Again thank you for all the information.

[PJBinMI in reply to Bubba_6]

Living away from major cities can limit our options, that's for sure.

[Scarey4]

I had 10 rounds of radiation on my T12. I had this done before my chemo. The radiation took out the tumor on my T12 and stabilized my spine. That was almost 5 years ago and I am still NED. Chemo took care of the tumor on my breast, in my lump nodes and three tumors in my Liver . I am her 2 triple positive upon diagnosis and I have been NED since 2013. I was on taxotere for 5 rounds, then on tamoxifen, Herceptin and perjeta for 4 years. My oncologist wanted me to take a break from perjeta due to difficult side effects. Currently, I am on Herceptin and tamoxifen. I go to the Mayo clinic in Rochester, MN. Let me know If I can answer any questions for you. God Bless.