Mets to L2 spine and opted to not have radiation but did take Letrozole/Ibrance (or similar)?

[OceanBreeze3]

Wondering if radiation is necessary if pain is not bad.

[MacroMom]

I have bone mets all over my spine, ribs and pelvis but have never had radiation because I'm not in pain from them....what a miracle that is! I was on Letrozole alone for 15 months, then Ibrance/Faslodex for 2 (didn't work for me), then Xeloda, now Abraxane. If you only have bone mets in one spot perhaps your oncologist hopes to stop the spread? Are your doctors recommending radiation?

Take care!

Patty

[OceanBreeze3 in reply to MacroMom]

Patty - did the medicine reduce the mets in your case? The recommendation is for radiation but I hate to go a route I may not need too go if the medicine alone can shrink the tumor. Radiation has so many lasting effects.

[MacroMom in reply to OceanBreeze3]

I think it would be accurate to say the medicine stabilized the bone mets. I was told that even with a nuclear bone scan it's hard to see changes in bone mets because of the scarring that occurs, and the way the bone can be broken down and rebuilt in weird ways. I was in a lot of bone pain before I was diagnosed, and that all stopped within 3 months of being on Letrozole and Xgeva. I have occasional pain in a rib if I do too much, but it's a place that had actually fractured (who knew?) and healed itself so not something that radiation would probably help. The meds did shrink my liver mets...those are the ones that get active when a therapy stops working.

Like you, I hesitate to have treatments unless absolutely necessary. I'd ask the oncologist if the radiation will prevent spread of bone mets, and why they recommend it. From posts I've read here it does seem that radiation can help a lot with pain in a particular area. It also seems that there is a lifetime limit to the radiation we can have, so perhaps best to "save" our allotment for when we really need it?

Hope some others who have had radiation chime in with good advice!

[Hidden]

Hi OceanBreeze3,

Is the L2 tumor your only one? If so, would they be radiating it in a limited way to reduce non-existing(!) pain, or more extensively to obliterate it?

When I was first dx metastatic I had one tumor, T12. They did full-blown radiation to try to obliterate it, in the "one in a million" chance that somehow that would be like a cure. After the cancer spread further, I was told that the only radiation I would receive would be palliative, i.e. to reduce pain, since the cancer was clearly systemic and radiating a couple/few tumors really doesn't address the disease. The meds deal with the system...

A couple of years ago I got it into my head that I wanted my largest tumor (sacrum) radiated. I pictured it as a cancer factory, worsening my overall condition. I learned that it really doesn't work that way (! :), although there is still a small, irrational part of me that feels (not "thinks") that the presence of lots of tumors somehow contributes to more tumors (like fungus on a tree trunk w/spores...). BUT, I think this is medically inaccurate...

Anyway, if this is your only tumor, I would more strongly lean toward radiating it, especially if this will not be "rads-lite", but full-blown. Not only for the reason mentioned above, but because there is apparently a quasi-metastatic state known as "oligometastes" (sp?). There are some who believe this is actually curable and, at a minimum, comes with much better prognosis. It's characterized by having just a few (something like1-3) tumors limited to one organ (bone = an organ). There's no clear diagnosis of this, and a lot of disagreement in the medical community, but if you might "be oligo" then I think that's another argument in favor of radiation.

Let me give you my sister as an example...

She was dx metastatic, triple negative, a little over five years ago. She had one tumor in her sternum, which they radiated, full-blown. About a year later she got a tumor in her lung. They were going to biopsy a sample but she convinced them to just remove the whole tumor. Then she was NED for another 18 months, got another tumor in her lung which they removed in full again because they saw how well she had done after the previous surgery. She's been NED ever since.

So the point is that by getting rid of each tumor as it crops up, somewhat infrequently, she is NED for long stretches of time. This is especially remarkable given the pretty grim stats re: triple negative.

I'm not even sure that what I'm saying makes sense. If that tumor in fact does not encourage further spread (I'm not 100% convinced), then I guess live with it, hope for the best with the systemic treatments, and know that it will not effect things in the long term. I guess I, for one, would just feel better, psychologically, frying that f#@4er(!) and hoping that none of it's friends take root for a long time!

This having been said, I do recall that when I did rads to my T12 the doc did indicate some not-insignificant risk. He knew of a case in another city in which the radiation resulted in paralysis. Extremely uncommon, I'm sure...but you'd of course want to weigh that sort of thing into your decision. I wouldn't really weigh short term side-effects, though.

Please do let us know what you decide...Good luck with it!

Lynn

[Hidden]

I have only had radiation to help with pain. My hip and neck/base of skull were both done at the same time. I found it did not make much of a difference. I’ve been in severe pain and the pain meds help where the radiation didn’t. It also had some vicious side effects. On December 27 I had a high dose radiation treatment to T8-T11 as my scan report said there was growth. My radiation oncologist said he did not think there was any growth but it would help with pain and would zap them a bit to help treat them. I wasn’t going to but my son and husband were with me and thought it would be beneficial so I had it. I would honestly not do it again. I get so sick and the pain flare up was bad. Since then I have had to increase my pain meds. Sorry for the long reply, just wanted to share my experience.

Speak to your oncologist about the reasons they suggest it and think long and hard. It is your decision and don’t let me or anyone else decide for you. Good luck. ❤️

[Blakeysangel]

Hi,

I had a lesion on my L4 that looked active, only one on spine, I had it radiated in Oct 19 it appears to have stopped it in its tracks 😀

[AvidBooklover]

I had one bone met to my left hip found in March 2019, and they zapped it in April. NED a few months later. There is bone damage as the tumor had hairline fractured bone in 2 areas. The interesting thing is my original breast surgeon said this tumor, which is slow growing, could have been there since my first surgery in 2012. They never scanned my whole body. This is one reason why --- "all is groovy" at five years is a myth...unless we are scanned, there is no way to really know!

[Red71 in reply to AvidBooklover]

Totally agree with you about the all is groovy at 5 years myth. I think they ought to be doing mri’s at that point. Bone mets can grow for quite a while before you have any symptoms that will be caught by an office visit. Elaine

[AvidBooklover in reply to Red71]

EXACTLY...they are doing women a HUGE disservice. I thought I had sciatica for a couple of years on my left side. NO ONE said mets. They said the pain would have to be ongoing to be a met. They were wrong. And my concierge internist never thought met.

BTW...even more annoying for me...I felt a lump a year or more before being originally diagnosed. HAD ultrasound and mammograms TWICE and they found nothing. Seriously. I pointed to where to scan. It was very close to my rib so they "could not get there" they later told me. Saw TWO doctors and mentioned this. One a second time and then he said...maybe you should see a breast surgeon. Reality...NO woman wants to see a breast surgeon...if they says it's nothing...you do not run to pursue it.

CT/PET or MRI at 5 years.

Thanks...

Carol

[Red71 in reply to AvidBooklover]

Even after having breast cancer 8 years previously, when I had excruciating back pain my concierge internist (you’d think they would be more thorough since you pay them more) dismissed it as muscle and didn’t follow up with an MRI until my husband reminded him that I had had cancer. I was in so much pain I wasn’t advocating very well for myself at that point. I had had rib pain as well but had dismissed that as overdoing it building a stone wall. I mean, I was 70, we do get old age aches and pains...or that was what I thought! Everyone needs to push for more follow up!

Elaine

[AvidBooklover in reply to Red71]

I agree with you about the concierge doctor. I really think I had Covid-19 in mid-March. He said I did not have enough symptoms to be tested. My cough was wet, not dry. It made me crazy that I was sick for two full weeks and three weekends and he could not get me tested. When the antibodies test is ready, my son and I will be there for THAT.

And yes, his missing this was really a fail.

Also, I saw an orthopedist for an MRI...and I told him my history. I had melanoma before I had breast cancer...he called the next day to tell me he thought my melanoma had spread to my hip. Can you imagine? I said...no, it probably would be the breast. It was not a pretty moment...and he was so brusque. I immediately called my surgeon at Sloan who I love, not the survivorship oncologist and had HIM figure this out.

Crazy how we need to be on top of things.

Carol

[Eliactida1955]

I have Mets to that area and up and down spine and have been taking letrozole Ibrance and was doing zometa every three months but I skipped that recently. I started the meds in November 2018 and now tumors have disappeared from my breasts the pet scan looks like they have been radiated or a lumpectomy and it’s crazy because nothing was done. I have stage 4 Mbc to bones but happy nothing is lightening up -area on leg sclerotic and left axilla node appears calcified. Hand in there!! If this med works for you it just will. The side effects are difficult but that gets better too. Ask me anything you want. We are all in this thing together and thank God for this forum.❤️🌹

[Shelby4now]

Hi OceanBreeze3

I have many tumors in my spine from t1 to l4 along with the scapula,ribs,hips,and the lining of my scalp. I have not been very successful taking the chemo drugs to control progression. I have tried herceptin,evermestine,letrozle,