Oligometastatic Prognosis
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RaraJ75 - Now that would make sense that you would need those surgeries. Congrats on your on your CT scan! I think that means you are NED (no evidence of disease) then, doesn't it?
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Curing Metastatic Breast Cancer. This is a great article on treating MBC with curative intent. I showed the information to my MO and he came around to my way of thinking with some localized treatment being of benefit. I am currently NED and taking a chemo holiday. I firmly believe those with oligometastatic breast cancer should be treated with more than systemic chemo.
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JCSLibrarian,
Thanks for posting that link. I've actually read that article before, but it was good to read it again. I think the devil is in the details as far as MOs are concerned. I'm not sure that they all believe in oligo disease, or even the principles behind it. In my nonscientific mind, however, it makes perfect sense that if the tumor burden is lower, it's more likely to move towards a cure-like state.
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I recently received my PETScan after starting treatment, was first diagnosed with MBC in August 2019, which my first scan showed I had one area after the lumpectomy (a spine met at L2). I had 3 tx of SBRT in October. I am scheduled this week to see my MO and RO (next month). Since I'm fairly new at this can someone interpret this PETscan. I'm on the I/L combo with Xgeva and Zoladex. RO has stated previously in his notes I'm Oligometastatic but have no idea if I remain or being treated aggressive.
IMPRESSION
Mild heterogeneous FDG activity in the left breast with associated surgical clips and overlying skin thickening likely related to known diagnosis of malignancy with posttreatment/procedural changes. Possible residual microscopic disease can not be entirely excluded.
As compared to prior PET-CT from 08/22/2019, diffuse hypermetabolic activity at L2 vertebral body demonstrates decrease in FDG avidity and is associated with mixed lytic and sclerotic changes corresponding to known metastatic disease with some response to treatment. Continued imaging follow-up to document complete response to treatment and to exclude residual disease is recommended. No other suspicious FDG avid lesion or lymphadenopathy in the chest, abdomen or pelvis.Thank you in advance for reviewing..
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JCSLibrarian, thank you for the article. For me, it highlights the fact that bc is a complicated disease, not just a single entity. Defining what “cure" even means it not as simple as one would think.
BevJen, I agree that there are still mo's who do not believe in the state of oligometastases. Some believe that once the horse is out of the barn, mets are mets, period.
My story, 8 1/2 years NEAD, is a bit convoluted. About 6-8 weeks after my bmx, after which I was staged at IIB, my single bone met was discovered by accident during an unrelated PET scan. A biopsy confirmed it was a perfect match to my breast tumor. Since it was 2cm in size, it's pretty safe to assume it was there all along, but without symptoms there was not reason to suspect mets. My doctors never spoke about survival time nor cures. Both my mo and second opinion mo agreed that either AI's or chemo would be reasonable choices, along with rads to the bone met. Rads were not for pain relief, as I had no pain, but rather to annihilate the met. I did rads and then chose to go with an AI and a bone strengthening drug (older drug called pamidronate which I used for about 2 years before stopping). I have never had any type of chemo. Some would argue that my tx has not been delivered with curative intent, that I have not been aggressive enough, yet I have had a lengthy period of NEAD. Would I say I'm cured? No, but I'll take NEAD for now !
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Exbrnxgrl and all,
As you say, you are NEAD. From all of the reading that I have done on metastatic breast cancer, that is the goal here. Scientists still do not know if we continue to harbor cancer cells in our bodies even once we are treated -- the goal is to keep them at bay. I was NEAD from 2006-2019, having been diagnosed with a single site met in 2006. Most likely, something triggered a recurrence in my body -- I have my theories about that, but too involved to explain here. Suffice it to say that I had a rough couple of years just prior to my recurrence. My goal now, since I'm again in "active" treatment, is to keep things stable or declining, and to get back to NEAD. I don't care so much about the wording -- am I cured? Am I oligometastatic (since my lesions now appear to be only in my liver, and we think there are 4-5 there)? Doesn't matter to me if I can keep the cancer at bay. Do I push for aggressive treatment? Absolutely. That is my number one goal each time I meet with my MO. I think the point is to be informed and to also make sure that your MO knows that you are informed. Things like bringing articles to your appointments to enlighten your doc can only help the situation.
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BevJen,
Quite the conundrum, isn't it? When given a choice between chemo and an AI, presented as equally effective options, I went with an AI which most consider less aggressive. I'm a less is more kind of person so this made sense to me. I will, in all likelihood, always go with the least aggressive tx when presented will roughly equivalent options. Like you, I'm not very focused on the nomenclature but right now, “cure" is a bridge too far for me as there is no definitive way to prove it.
Your comment about being well informed, bringing articles to mo appointments, etc. is right on. My long time mo, who I adored, has moved. I will meet my new mo in early February. I have been compiling a list of questions for her and can only hope she is as open and respectful of my intelligence as my previous mo was.
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Hello, ( I cross posted in another group " Stage 4 with breast)
I hope this is the right area to post. Since the title "stage 4 with breast", I at least fit into this category. A brief synopsis of my situation: I had a lumpectomy back in August 2019 (surprise de novo). pet scan revealed bone met (L2 site). I had 3 successful SBRT to spine. From September 2019 to present I'm on systematic tx (ibrance, letrozole, zoladex and xgeva). At the end of January, I had my first pet scan, showed complete response to treatment. (NEAD). Last week, I met with my breast surgeon. I had had a mammogram and ultrasound. At the surgical site there was a heterogenous hypoechoic area with fluid and soft tissue. As well as small modular densities and macrocalcifications
So after reviewing the report, the topic came up for radiation due to the potential of high risk recurrence. Since I am stage IV this had not been an option. However there is controversial research on radiation therapy to the primary tumor for de novo metastatic breast cancer. Ironically I had my follow up appointment with the Radiologist regarding my bone met. I brought this forward to the Radiologist and he seemed on the fence or 50/50. Basically he is leaving it up to me.. Discussed benefits (prevention)/drawbacks (potential side effects).
Respectfully I am asking this group for input or feedback. I am hoping someone else may been in a similar situation.
Thanks in advance..
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Tinkerbell, my case is similar to yours but I did not get SBRT to my spinal lesion 12 years ago. However, I was advised to have radiation therapy in 25 zaps (IMRT) simultaneously to axilla, chest wall, spinal met and supraclavicular area after mastectomy. A second opinion in Boston confirmed this protocol in general for my case. I would get a second opinion for your case as well, particularly because you have received prior radiation and the tumor has not been surgically removed. I got through the exercise with some grade 3 burns, difficulty swallowing and reflux, but on the whole did well and continue to be NED. I wish you lots of luck!
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tinkerbell,
I had a met to my liver (2018). Also denovo. After systematic treatment, I had a mastectomy with radiation to the breast area (and SBRT to the liver). Second opinion at University of Chicago agreed that breast radiation would be beneficial.I would agree with Heidihills suggestion on trying to find a second opinion. Best wishes on this journey.
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I was diagnosed de novo in September 2019 and I had a full mastectomy followed by 15 radiotherapy sessions to chest wall and lymph noses. I also had rads and surgery to my spine. I tolerated the radiotherapy well.
Same can’t be said my subsequent systemic therapy (Ribociclib) but that’s another story!
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JCSLibrarian: Thank you for the link. It was a great read and gives hope to many of us. Going for my 6-month PET scan today. I am fine with the scan, it is the waiting for the results that is hard. I told my MO I didn't want to know the results until I get back from a 5-day break of escaping the Wet Coast of BC to sunnier climes in the USA this weekend. I am optimistic but realistic. I don't want bad news to dampen my enjoyment. I can pretend for a few extra days that all is well.
I did do 6 months of Pacitaxel with good response. Now on H&P -- for a very very long time, I hope.
Blessings to all
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Sorry it took so long to respond. I work 10 hour days.... First off thank you for responses. It gives me reassurance, for this is a difficult decision. As far as a second opinion, Unfortunately the closest NCI is 2 hours away. On a positive side my BS is from another institution then then the RO. I chose the RO and MO basically for it's closer in proximity to my home. I trust my BS for it's been a 15 year relationship. So that's why I brought it forward to the RO. RO is conservative but is reasonable, feels is the side effects worth the gamble, meaning a reoccurrence can happen regardless. Its been 6 months from primary tumor removed, s/p lumpectomy. However the recent literature appears to be in favor of "circling" back in specific cases "low tumor burden" de novo. I'm leaning towards the radiation unless a reasonable discussion can sway me in the other direction. My MO has not chimed in yet but she is also rather conservative, standard of care...
Heidihill: Congratulation on 12 years of NED... Hopefully many more years....
Danbee: Sounds like your aggressive approach worked in your favor. Continue well wishes.
raraJ75: Despite having some setbacks with the systemic treatment, do you believe the mastectomy and radiation was the appropriate treatment approach when diagnosed de novo?
Rosie24: My battle buddy. I got a voice message from the RO office to set up an appointment for the mapping next week. I will call tomorrow (leaning in this direction but anxious).
When I got home my husband asked why are you running to your PC. I looked at him and said my life is in the hand of perfect strangers but feel their experiences make me feel connected in ways perhaps you cant understand. He sighed, I guess will be eating later. LOL
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Tinkerbell, I’m hoping you come to a decision you feel good about!
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I am glad that I had the mastectomy and rads. I would prefer to do something than not if that makes sense? My oncologist and surgeon just presented them as what was to be done especially because of the low disease burden. I am up for any treatment offered!
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Rosie24: Last few minutes I'm reading the radiation topics. Boy some of these ladies are having horrific side effects. Lymphedema scares me more then anything. I recognize everyone responds differently. So if I go for the mapping, certainly I need some education re prevention of side effects. Since my tumor was on the left side, I will need your gadget (snorkel equipment or whatever that contraption) is to reduce toxicity to heart and lungs.
raraJ75: Sounds like your treatment team was aggressive out of the gate.. Glad to hear you are on board. I need to jump on the train before it passes me by, not sure if this would of been offered if I had progression on my last pet scan a few weeks ago. Fear is not the greatest motivating factor but for now it will spring board me into some type of action.
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Tinkerbell, I’m sorry, I tried to copy a YouTube link here with the set up that is being used for me, but my tech skills are lacking! It’s called Active Breathing Coordinator. There were a couple good video demos, or you can just search for breath holds radiation and maybe you’ll find some other systems being used. I have no idea if this is used in all cases or in all facilities.
I know what you mean about reading the less than favorable outcomes that people have had. I read almost anything I could find for a while and figured I knew what could happen, but still hoped for the best. We each have to make our own decision based on what we feel is most important. (I hope you read some good and great accounts too. 😊)
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i was told to use the breath and hold technique. Basically you need to be able to hold your breath for about 20 seconds. They do it as part of the planning scan and then again during each session.
They draw lots of dots and crosses on you each time based on the planning scan and your breath hold and the laser matches up with the dots. The machine moves around you and gives four lots (I think) and makes a loud buzzing sound as it is working. It lasts 20 seconds each time and that is when you hold your breath. In all each session lasts about 20 mins but much of that is getting you in position and drawing on all the dots!
I had some skin redness but that is about it. My mother in law and a few of her friends have also had it done over the years and they had minimal side effects too. The people I met in the waiting room were all ok too. So although of course people can have horrible experiences lots of people don’t!
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Rosie 24 and raraJ75: thanks for the information on the breathe and hold technique. I plan to watch the You tube videos this weekend. The RO office was concerned for I didn't call back, it wasn't intentional. I had plans of doing the same at the end of the day. Prior to calling, I listened to my voice messages. The RO clerk (who I knew previously from SBRT) took the liberty of scheduling and said "we made your appointment on 2/25/20. Please call if this date doesn't work for you....
So my mapping appointment is scheduled... I know the RO clerk has my back. She must of sensed my hesitation. In the meantime, I plan to chill and stay away from these radiation posts which exacerbate my anxiety. Rosie, I hope you are hanging in with your radiation. Glad to hear raraJ75, you got through the radiation relatively unscathed.
Do I need to purchase anything in anticipation of these treatments? I read something about lotions/ointments, bras, cotton tops, etc.
Thank you ladies for being part of my journey...
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Tinkerbell,
I had 16 radiation sessions to the chest wall, axilla, and supraclavicular nodes. I am also de novo oligometastatic and currently NED ( for 1 year so far) . A lot of things were off the table for me at the beginning, however, once I basically had a complete response after 4 treatments of chemo ( I still did 6 rounds though ) , they changed their minds, went for curative intent, and let me have the mastectomy and rads ( all which weren't an option before). Them wanting to do that approach made me feel like it was the best thing for me in particular , especially after I saw my Path report ( I had IDC, DCIS (7.5cms with), LCIS, PASH, Papilommas, Hyperplasia, completely dense, and almost every other breast abnormality out there ). I did the deep inspiration breath hold and did well with that. My Last pet showed that t here was some affect of t he rads on my lungs ,but all is well.. I feel great
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B-A-P: Thanks for your input. I really needed this reassurance. Wow (You had a frightening path report). Thankfully everything worked out for you and your still NED. I go for the mapping this Tuesday.. Scared Shi$!les, but as above like yourself they felt it was worth it... I looked into the deep inspiration breath hold on you tube. Hope I'm coordinated enough to pull this off.. lol.
Rosie: Just checking in to see how your first week went with the rad?
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Tinkerbell, The full week seemed long as we have about an hour drive each way to my radiation site. The treatment was fine, using creams 2x a day, may have to step that up. Hope your mapping goes well!
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Tinkerbell,
You'll be able to do it. Nothing it. The machine stops if you don't hold it, long enough and they allow for a reset. I did well with it but there were a few tech difficulties ( they thought I was letting go of my breath but it turned out the sensor wasn't on my belly properly). All in all, it was pretty okay
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So I don't hijack this site with radiation. I want to thank you Rosie and B-A-P for your support. My mapping and simulation was the same day with the deep inspiration breath. Rather awkward but got through with out incident. I will be starting on March 9th (25 sessions with some "boosts") . Hence I will jump on the March radiation topic.
Wish everyone well and continued "Oligo" status.
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Hello everyone,
I was diagnosed 6months ago oligo .
3 small METS to lungs , currently NED . I had 2 removed by surgery and the third Cryoablation.
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how are you doing ?
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Welcome Foxanne,
After 8 1/2 years of NED, I can’t complain (much). Take a few minutes to fill out your diagnosis (signature) and make sure you set it to public. This helps everyone understand your particular “flavor” of bc and when you have questions or concerns, those with similar dx’ed can respond. Have a good weekend!
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For my oligomets dx, my MO said curative intent and he meant chemo, surgery, rads to breast, and rads to my bone met To kill it (rather than to address pain). I then started Letrozole and Ibrance.
A palliative approach would typically mean no chemo or surgery and rads to treat pain. Hormonal and Ibrance would be the treatment for Er+ Her2
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Hope everyone is well 😊
Any lung oligos here ? I am one
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Congrats!
I hope you’re still doing well !0
