May 14, 2020 10:13AM berries wrote:
Also, does anyone have any recommendations on treatment? Radiation? I am so scared.
Meet others concerned about developing a recurrence or metastases.
Posted on: May 14, 2020 09:00AM
Yesterday I received news, after a CT scan for "peace of mind" that they found 5 small 'sclerotic foci' throughout two ribs, my sternum S1 vertebral and femoral head. I had a clean CT and Bone scan in October, just 7 months ago, and then went right into a MX, dose dense AC/T chemo, and radiation and had just started Xeloda for added protection, as well as Arimidex.
Has anyone heard of having progression so quickly? I just completed radiation and still have inflammation and tenderness in that area, so I am hoping those lesions are due to radiation, but I can't really explain the other spots, but my MO said it could be from the Lupron I have been on for 8 months.
My next step is to have a bone scan and biopsy. I am so terrified. I am 35 years old. Married just 3 years ago and my husband and I were planning build a family and start our lives together, now I do not know if I will be there for him.
Has anyone heard of having progression so quickly? Thank you x
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May 14, 2020 10:13AM berries wrote:
Also, does anyone have any recommendations on treatment? Radiation? I am so scared.
May 14, 2020 10:34AM Moderators wrote:
We're so very sorry to hear you're dealing with this, and we are sending lots of love. Someone will surely be by soon to weigh in with their thoughts. Please keep us posted on what you find out!
May 14, 2020 04:03PM berries wrote:
I talked to my MO today and she said it wasn't impossible, but is rare... any insight from those who this happened to would be very much appreciated. x
May 14, 2020 05:36PM exbrnxgrl wrote:
My situation is somewhat different from yours, but related. After my bmx, the final path report staged me as IIB. I was scheduled to start chemo and had agreed to be in a clinical trial. As part of qualifying for the trial I had an echocardiogram which showed some fluid around my heart. A PET scan concluded that the fluid around my heart was idiopathic and presented no health risks... but they noted a small spot on my upper femur. Several weeks later (I had been hospitalized for a collapsed lung which happened during port installation) the spot was biopsied and was an exact match to my breast tumor. Yup, still grade 1. I hadn’t even started tx and this finding was totally accidental. I never ended up doing chemo ( but the port is still there 🤷🏻♀️). I did have rads to my upper femur which rendered the met necrotic. I have only taken AI’s and did two years on a bone strengthening drug. That was over 8 1/2 years ago and I have been NED ever since. Personally, I don’t think I had progression. I believe that since it was an indolent grade 1, it was there all along but given my pathology findings, there was no reason to believe that I was metastatic.
All the best
May 14, 2020 07:22PM - edited Jul 6, 2020 09:42PM by RadagastRabbit
May 15, 2020 01:53AM buttonsmachine wrote:
berries, I am sorry you're in this situation. As other have said, it is possible to progress in a short amount of time, but often the damage from treatment can show up on our scans too. I've had a few spots show up that turned out to be nothing. That being said, I have a new spot my doctors seem to be more worried about now (even though I just had a clear scan in January!) so of course my brain goes to the dark places. You're not alone, for what it's worth. It's tough dealing with this in our thirties. I'm hoping the best for you!
May 15, 2020 06:05PM berries wrote:
So I had my bone scan. I don't think I'm out of the dark yet, but the technician (who said, he wasn't supposed to say anything) said he compared my October scans to today's and didn't really see a difference. I don't know exactly what that means and I still don't have my full report, but I truly hope these spots end up being nothing to worry about.
Thank you all for your prayers and thoughts. I hate this for us.
May 15, 2020 07:20PM NancyHB wrote:
berries - I’m so sorry for what you’re going through right now. I’ve been there, I know how confusing and frustrating it can be, and how it feels like there’s no definitive answer fast enough. Hang in there!
You can find things on CT that don't appear on a bone scan, and vice versa. Bone islands, arthritis, fractures or other things - some things are obviously benign, and some take more imaging to get a better idea of what you’re dealing with.
My original bone met showed up incidentally in a CT scan about 7 months after I finished chemo for a recurrence of my original cancer. My MO requested a bone scan to confirm, saying if a finding appears on both CT and bone scan they consider it a correlated finding - and metastatic. My initial finding was in such a place that it required rib resection to do a biopsy. I’d already had radiation to the area (first dx) and wasn’t keen to start chemo again, and the spot was reasonably small, so I opted to wait 3 months and scan again. In 3 months another spot appeared on both CT and bone scan - this time my sternum. Neither location is easy or convenient for biopsy so frankly, I’ve not yet had one. But both spots continue to appear on scans, and while my MO says they believe the spots are slightly larger now they’re fairly stable.
Hopefully the lack of findings on the bone scan is good news. Please let us know how you’re doing and what more you find out.
May 18, 2020 10:30AM berries wrote:
thank you SO much for your support. Your prayers and your kindness. I received my bone scan results and they are somewhat inconclusive, but I have breathed such a sigh of relief.
My MO called and said that there was no correlation on the CT last Monday to the Bone Scan on Friday except for MAYBE one small area on my 3rd rib, but they will probably not biopsy it. I follow up with a scan in 3 months, but continue Xeloda round 2 (my idea as added "insurance" before this roulette of scans).
I am 35, so seeing arthritis is odd, however, makes sense because I used to be a runner/marathoner. Now I just run 3-4 miles a day, which I probably will cut out.
Here is the full report if you are interested... I don't even know what to think????
Findings: Compared to the most recent prior study of 10/8/2019, whole-body images of the skeleton again demonstrate prominent periarticular uptake, which could be age-related or could reflect early arthritic changes. These findings are somewhat more striking on the current study. Also again noted is mild scoliosis of the thoracolumbar spine. There is a new focus of mildly prominent uptake in the upper thoracic spine at the approximate level T5 on the right, evident primarily on the posterior whole-body image, and not corresponding to any findings on CT, and of doubtful significance, possibly arthritic in nature. There is a subtle focal area of minimally prominent uptake noted in the lateral aspect of the left 3rd rib, evident primarily on an anterior spot image of the chest, which corresponds to one of the sites of new focal sclerotic change demonstrated on the CT study (series 2, image 12). However, the additional multiple new focal sclerotic foci demonstrated on the recent CT study of 5/11/2020 involving the left 5th lateral rib, left femoral head, sternum and upper sacrum are not associated with any suspicious focal findings on the current examination, making skeletal metastases in these sites less likely (see below). Persistent mildly prominent uptake at the lumbosacral junction posteriorly may merely represent a normal variant.
IMPRESSION: Whole-body bone scintigraphy demonstrates only one subtle focal finding corresponding to the several new sclerotic foci demonstrated in the left ribs, left femoral head, sternum and upper sacrum on recent CT imaging when compared to the prior study of 10/8/2019, as described above. While these findings make skeletal metastatic disease in these sites less likely, given the presence of mild uptake in one of these sites, follow-up repeat bone scintigraphy in 3-6 months is recommended for further evaluation. This solitary rib finding could represent either a site of previous trauma or conceivably a focal metastasis in this location, although the latter is statistically less likely. Radiographic correlation or other further imaging is also recommended for any clinically relevant sites. See above.
May 18, 2020 12:10PM berries wrote:
Thank you, jcp. I appreciate you!
May 18, 2020 12:41PM hapa wrote:
berries, why are you cutting out running?
May 18, 2020 02:02PM berries wrote:
Good question... I don't think I'll cut it out completely, but at 35, having early arthritic changes is probably not good for my joints or bones. The tech who was doing my bone scan on Friday actually asked if I lifted weights or ran because he could tell. I'll ask what my MO thinks the next time I talk to her.
May 18, 2020 04:30PM Maryjv wrote:
Great news berries!! Yay!
Jun 1, 2020 12:34PM berries wrote:
just heard from my MO on a possible biopsy. She wanted to talk to a more seasoned Radiologist. He is going to take a look and get back to us tomorrow if he would suggest a biopsy in the femur area. Most of the radiologists she spoke to said not a good idea.
Feels like I'm living in a terrible world of limbo.
I just can't imaging someone having a clear scan 7 months ago before chemo, going through 4 months of chemo and hormone therapy then to have this happen. Something just doesn't add up. I get years down the road, but now... with grade 1? I'm at a complete loss.
Jun 1, 2020 02:21PM Beesie wrote:
berries, I am sorry you are still in limbo. It's nerve-wracking.
You've posted several times saying that you don't understand how this could happen.
It's really simple. You had a scan. Scans find things.
Having something show up on a scan, and as a result needing more testing, is not in any way unusual. Particularly as we get older, we all develop these little abnormalities. You are still young, but you already have arthritic changes. You recently had radiation, you are on Lupron, you recently had reconstruction surgery - any of those things could cause damage that might be seen on a scan. And yes, even this soon after treatment, there is a small chance that this could be mets - a tiny met that was too small to be detected last time that, despite treatment, grew to the point of being detectable now.
Most of what scans find turn out to be nothing serious. I really hope that is the case for you. If it is, you need to consider, with your MO, on what schedule you will have screening in the future. With early stage breast cancer, these types of scans are not recommended unless the patient develops symptoms that require investigation. While scans are sometimes done for peace of mind, unfortunately that's a bit of a fallacy, because scans aren't particularly good at finding lesions that are too small to be symptomatic (with some exceptions, of course, as per the previous posters). So it's precisely because of the high probability of false alarms that routine scans aren't recommended for early stage breast cancer patients.
Are you thinking that you would like to have the biopsy, so that you have a clear answer? Or are you hoping that the Radiologist feels that a biopsy isn't necessary? What confuses me is why a biopsy of your femur is being considered, when the only lesion that appears somewhat concerning on both the CT scan and bone scan is on a rib.
Jun 1, 2020 02:46PM berries wrote:
Thanks so much for your reply. I appreciate you. And you are right. I had a bone and CT in October pre-treatment about 7 months ago. My MO said something very similar, could be nothing but bone abnormalities caused by chemo. I asked for a post-treatment CT as she does not do them unless there are symptoms (I do not have any) and she agreed. I have been running about 3-4 miles a day before, during and after treatment and have been on Lurpon since October.
Trying to make sense of all this honestly, but I know I can't. I'm also not clear why they would biopsy the femur if it did not correlate on the bone scan. Most of the radiologists she has spoken to said not to biopsy, but she is speaking to someone more "seasoned" tomorrow, so I will know more then. I hope he also agrees it will not be necessary. Just feels like such a heavy, heavy weight on me right now. Hard to focus on anything else or look into the future at only 35.
Jun 1, 2020 05:59PM exbrnxgrl wrote:
I posted earlier but since you are having difficulty understanding how this can happen I thought I’d chime in again. I never even got to chemo but was equally stunned to find that I had a bone met, whose discovery was accidental. My breast tumor was grade 1, how could it have metastasized? It all seemed very unlikely, one mo even said she highly doubted that what she saw was actually cancer yet one biopsy later, there it was (a perfect match to my breast tumor). I can’t speak to other cancers, but with breast cancer, sh*t happens.
Jun 1, 2020 06:33PM - edited Jun 1, 2020 06:33PM by berries
Thanks for your response, exbrnxgrl - did you just have one area that showed up?
How are you doing now? Looks like you are 9 years from your diagnosis, wow! xo
Jun 1, 2020 08:26PM exbrnxgrl wrote:
Yes, I literally had a single 2cm met on my upper femur. It’s hard to believe that it’s been almost nine years. Since rads to my femur I have had no progression. I have only been on AI’s for treatment, though I’ve cycled through all three hoping to reduce side effects. Despite joint and bone pain (which I find ways to cope with) I still teach full time and pretty much live a normal life. If you saw me you would never guess I have mbc. Ironically, I have had a few people question my dx*, but I had a bone biopsy so there is no doubt. I understand that I’m a rare bird and am not entirely sure why but the best se of exemestane, my current AI, is being alive, so I will continue taking it.
* They really begin to doubt my dx when I mention that I have never had chemo.
Jun 2, 2020 11:34AM berries wrote:
thats amazing exbrnxgrl.... do you have scans to monitor or BC tumor markers?
Good for you!
Jun 2, 2020 02:48PM moth wrote:
Have you heard of the surgeons Halsted and Fisher? Very, very, very simply, Halsted (who came first) is mastectomy guy. He believed the source of the cancer cells was in the breast, did not travel in bloodstream & he believed removing the whole organ was best shot at preventing met / recurrence. Along comes Fisher - he is lumpectomy guy & proved lumpectomy had same outcomes - who says: I think at presentation it's already either metastatic or not. It's either spread through lymph and blood and a cell is floating around, or not. We can do lumpectomy and then use systemic treatments to try to push that lever to the no recurrence side but a large chunk of the result is already predetermined. Removing the whole organ won't change that.
If you Google these guy's names and read more. There are tons of articles and explanations of their hypotheses.
But I remember being stage 1 and looking up lumpectomy v. Umx and landing on a page which said that thing from Fisher : it either is metastatic already or isn't. We just don't know yet, & being obsessed with this idea for many days.
Of course, adjjuvant treatments are pushing the lever harder and harder & genomic testing adds additional info about likelihood a tumor has seeded itself already. Still so much we don't know yet tho :(
Jun 8, 2020 10:21PM berries wrote:
Just an update after 3 of the worst weeks I've had possibly ever. My MO and a bunch of radiologists agreed that the areas shown on my CT were too small to biopsy and in places that could cause issues. Seems the only area of concern from my reports is a small area on my third rib which could be trauma. The other areas showed on my CT but not on my bone scan.
Anyhow, she is going to prescribe Verzenio and I will start in one week (I pushed for this, too) and repeat scans in 3 months. I also had my CA 27.29 and CA 15.3 drawn and they were 23 and 20, respectively. I hope that is good news? My other blood work, including calcium and ALT were also all normal.
Hoping and praying these were just issues from chemo/HT, but for now I've at least stopped crying every day (well, almost).
Thank you for listening
Jun 9, 2020 12:27AM MikaMika wrote:
This is great news about your bone scan and normal blood work! I hope your new scans will be normal to!
Could you please share your findings about Verzenio? Is it better than Palbociclib? Does insurance cover it for early stages?
Jun 16, 2020 11:22AM ctmbsikia wrote:
You don't think Verzenio is being a little aggressive? Seeing you don't know for sure you have a bone met? Why wouldn't they prescribe a bone med along with the AI which I thought was 1st line treatment?
Jun 16, 2020 12:20PM buttonsmachine wrote:
Berries, may I ask how you and your MO arrived at Verzenio, as opposed to Ibrance or Kisqali? I'd be interested to hear your thoughts on that.
My MO wants me to start a CDK4/6 inhibitor soon also, and says that we would probably start with Ibrance. However, it seems to me that Verzenio has a better side effect profile, and it even might be more effective. Maybe I'm mistaken about that - I'm just beginning to look into these medications because I've never had them before.
I'm in a slightly different situation to yours, but I've had Grade 3 cancer recur locally a couple times, despite being on active treatment ever since diagnosis. I still have no evidence or confirmation of distant metastasis, but the risk for this is high and I have a couple spots they are monitoring but don't want to biopsy. Because of this, I'll be starting a CDK4/6 inhibitor soon too.
Jun 16, 2020 06:40PM berries wrote:
I do think it might be aggressive, but that is the whole point. Plus, studies (monarchE trial) have shown a benefit. https://investor.lilly.com/news-releases/news-release-details/verzenior-abemaciclib-significantly-reduced-risk-cancer?fbclid=IwAR32FxfUA12wSomKNESx-4Creep8VRjWKrYAqD9vioVj9KgfrcSCY_Ih9VU
Buttons - I would ask your MO about Verzenio. I originally requested to start Ibrance, but my MO suggested we do Verzenio instead because studies have shown a greater benefit. BTW, I am also in my 30s. I am sorry you are going through this! What areas are they monitoring and how did they find them?
Jun 17, 2020 01:21PM buttonsmachine wrote:
berries, thanks for that info. I have also heard that Verzenio appears to be more effective, and that does not lower your WBC count as much as Ibrance or Kisqali. I definitely plan to do a bit more research and ask my MO about that.
My latest local/regional recurrence was discovered on a PET scan, and then confirmed by biopsy. I've been getting three PET scans per year for the last two years because I am at very high risk for distant metastasis. Also, because my cancer seems to resist many treatments, my MO said it is important to find any new sites as early as possible.
The CDK4/6 inhibitor route will be new to me, and I hope it is more effective. Chemo and hormone medicine seem to slow my cancer down a bit, but my cancer still grew even on Faslodex. My doctors have said (and I am living proof of this) that BC in young women often behaves differently, so I think there is definitely a case for more aggressive treatment.
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