Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

De Novo Stage IV

Options
145791085

Comments

  • seeq
    seeq Member Posts: 1,108
    Options

    KBL, I must have said that wrong. I meant risk of excess radiation from imaging. Sorry for the confusion.

  • kbl
    kbl Member Posts: 2,765
    Options

    Oops, after rereading, I’m the one who read it wrong. Lol. Yes, I’d much rather have the MRI. Sorry about that.

  • forza
    forza Member Posts: 144
    Options

    hello !!

    I’m also one of those de novo stage 4 people. Don’t think I found this tread before , so happy to add to this group.

    Also NOT operated on. It was all scheduled but 2 days after , they got the results of the full body scans and lumpectomy got cancelled. My lymph nodes were a war zone , thyroid and bone mets. Happy to report that my latest scan is showing stable so only 1 stubborn bone met left. The big one they biopsied. The tumor in my breast and all the other mets have shrunk to nothing ... annoyingly my boobs now look quite asymmetrical. I know it’s not important but I was quite happy with them before. I’m on oral therapies only so very much alive and kicking. I wanna say 15 months in ??

    Virtual hugs Jen

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    Options

    Hello, everyone, just found this thread. I was diagnosed de novo after I found a lump but had a negative mammogram. Went back to the doctor a few months later and it had spread, very quickly. It’s aggressive, it’s been difficult to treat but I hope I have some time with the latest treatment and new doctor. I now go to a university hospital for treatment and my doctor is a researcher in TNBC so I feel like this is the best care I can get. Trying to maintain a decent life with a constant change in treatment has been difficult.

  • kbl
    kbl Member Posts: 2,765
    Options

    Hi, Foza and Wanderingneedle. So sorry you’ve both joined this de novo club, but hopefully you can get something out of this thread.

    Forza, so glad you’re doing well. I hope they can get that stubborn met to respond.

    Wanderingneedle, I’m sorry you’ve got an aggressive cancer. I don’t quite understand how cancer can change. It’s so weird. I have no experience with TNBC, but please know I’m thinking of you and hoping they give you expert care and can slow things down.

    Virtual hug to you both.

  • snow-drop
    snow-drop Member Posts: 522
    Options

    welcome ladies to the club that no one wants to be.

    They say cancer cells evolve over time but I put money on lab mistakes.

    Please check mbc.komen.org there are mbc virtual conference series from west to East sep-oct, I joined one of them several months ago and found it quite useful, Specialists discussed about latest research and treatment options, for me was educational as I learned whatshould know about treatments that my MO doesn’t explain to me.

  • d37
    d37 Member Posts: 73
    Options

    Hi I’d like to share my story: early June I was experiencing intense pain in my right side below my rib cage and right shoulder blade. My primary care doctor thought it was muscle related but sent me to get a CT scan of my lungs in case it was a blood clot. Right after the scan I was sent back to the doctor’s office to be told I had metastatic cancer of the liver. A biopsy was scheduled and in the meantime I had my annual mammogram which came back clear. The biopsy showed breast cancer. I have never been diagnosed with breast cancer and have had 3D mammograms regularly. My grandmother, aunt and brother had breast cancer. I have had cysts biopsied and have dense breasts. My MO said that my immune system may have fought the original cancer in my breasts or a few cancer cells may have traveled to my liver when I had implants removed. I had no distinct symptoms until the pain in my side. For the last four years I have had digestive issues that have progressively gotten worse. I had an endoscopy, colonoscopy, have tried gluten free, lactose free, thought I might have IBS, you name it! Now that I have started Taxol my digestive issues have disappeared. Has anyone else experienced this with liver mets? Thanks Sondra for telling me about this thread and thank you KBL for starting it! Time for me to try to sleep but I’m on a steroid “high” so I’ll probably be up until 2 or 3 😩

  • seeq
    seeq Member Posts: 1,108
    Options

    D37, Wow! that was a fast diagnosis, with no time to adjust to the idea. I'm sorry about the diagnosis, but welcome to the site.

    I was also diagnosed de novo with liver mets. I had a biopsy showing BC and a PET/CT scan before my mammogram and breast U/S, or they may have come back negative, too. As it was, they were looking hard for something and found a 15mm spot low in my left breast.


  • d37
    d37 Member Posts: 73
    Options

    Hi SeeQ,

    I see that you are newly diagnosed too, I’m sorry that you are going thru this too. I had a PET/CT scan but not an MRI. I wonder if anything would have shown on that. There was a month between knowing that I had liver mets and breast cancer diagnosis. That was the month from hell, thinking that I was stage IV and it could be a cancer like pancreatic that my late husband died of 8 years ago. I was so afraid that my kids (now 21, 25 and 26) would have to lose their mom too. I don’t want to minimize in any way my cancer but I was relieved that it was triple positive breast cancer that can be treated. I’m being treated near home but I went to Dana Farber (where my husband was treated) for a second opinion and the MO that specializes in the type of breast cancer I have was extremely positive. After my husband passed away and after a year of adjusting to a new normal, I appreciated life more, re-evaluated my life and eventually had the opportunity to change my career into something I love. Life is not all “coming up roses” for me but it could be worse right now. I feel for the women on this forum that are fighting a tough battle. I pray for all of us that we have many more years.

  • kbl
    kbl Member Posts: 2,765
    Options

    Hi, D37. I’m so glad you found this thread. I appreciate Sondra letting you know about it.

    I’m sorry for the recent diagnosis you’ve had. When you say you had an endoscopy, did they do any biopsies there? I’m curious to know. My breast cancer was found through endoscopy.

    I have another thread where I posted because I just found out recently through bone biopsy that the cancer is throughout my whole spine and has been there since they suspected I had metastasic cancer back in 2013 but couldn’t find it, so I went six years with no treatment. It started there and spread to my stomach

    I’m so glad your digestive issues are better.

    Did they tell you whether it’s invasive lobular or invasive ductal?

    I agree, waiting for test results is the worst.

    Did the pain in your ribs start slowly and get worse? I’ve had a pain in my left rib that is intermittent for quite some time. One CT scan showed a “cyst” in my liver, but I haven’t gone any further than that at this point.

    I hope you were able to get some sleep, and thank you for posting. Hearing everyone else’s stories helps me find information that I can ask about, so I appreciate everyone for being here.

    That’s so awesome you’re doing what you love. It helps tremendously with stress level.

    I’m really sorry about your husband.


  • seeq
    seeq Member Posts: 1,108
    Options

    D37, I'm sorry about the loss of your husband. I suppose you are walking into this with your eyes open, so to speak, having been a caregiver for your husband. Although I've had two acquaintances that died from pancreatic cancer, I don't know much about it - except that it's very tough to fight. Good news from your second opinion MO. Your resilience and tempered optimism are admirable, and what I appreciate about the ladies here. How wonderful that you could make such a positive switch in your careers.

    KBL - re your question about liver pain. I didn't mention that about 8 months before my diagnosis, I had some severe bouts of pain under my right rib cage. It was about 3 weeks after an accident where I had broken my ribs ( around on the right side and high in my back), and I was still in pain from that, so I wasn't sure what was causing the new pain. My bloodwork, that we were already monitoring for increased liver enzymes, showed elevate gall bladder (levels?), so my PCM thought I might have has some sludge passing through my gall bladder. By the time I was referred for u/s, I had low level pain under my ribs about 80% of the time, with some pretty good twinges now and then. At first, I wondered if the accident precipitated anything about the cancer in the liver, but then I considered the fact that I already had indications of liver damage from the bloodwork and decided it must have just been a coincidence.

  • kbl
    kbl Member Posts: 2,765
    Options

    Thank you, SeeQ. I don’t have any indication in my bloodwork that there’s any problem, so I appreciate your explanation. I’m sure my rib pain is just normal stuff, it comes and goes. I had a car accident in 2013, and four months later is when they saw what they thought was some kind of cancer in my spine. It’s weird how they find things for sure

  • d37
    d37 Member Posts: 73
    Options

    Hi KBL,

    I did not have any biopsies during the endoscopy. That must have been a shock for you to be diagnosed with breast cancer from an endoscopy. I know that I was shocked when I found out I had breast cancer on my liver and no sign of it in my breasts.

    I’m so sorry that you went undiagnosed for six years and that the cancer is throughout your spine. I hope your MO can get this under control for you now that they know what is going on. I hope you are not in pain.

    I don’t know if it’s lobular or ductal. I’ll have to ask my MO.

    My pain was under my right rib and the pain was also in my shoulder. I have a physical job and it came about suddenly after I did a lot of strenuous work. It felt like a stitch that you’d get from running but much more intense and painful. When I took it easy it got better. My MO said that the tumors on my liver were like raw abrasions that were rubbed and squeezed by my diaphragm every time I moved. When they told me I had metastatic cancer to my liver I asked if they could possibly be cysts. I was told that cysts look very different than cancer. I also had bloodwork that showed liver damage.

  • kbl
    kbl Member Posts: 2,765
    Options

    Hi, D37. Thank you for your response. I will tell you that when I did have the endoscopy, he took five samples and literally told me he didn’t see anything suspicious and he only saw some gastritis. He was beyond surprised when the cancer diagnosis came back. He still to this day said my stomach looked normal. If you have any symptoms like really satiety or losing weight quickly, I would have another endoscopy with biopsy. It doesn’t mean it’s cancer, but you never know. I’m more than grateful he did take the samples. I went back for another a month later, and he took 12 samples. The second time it was found in two places. I just had another one after a year, and it’s in three places in my stomach and now there are nodules in there that weren’t there before. Lobular is a very sneaky cancer.

    So far the Ibrance and Letrozole are keeping my tumor markers down, which is one of the only ways I can watch. That and how I’m feeling.

    Thank you for the explanation on how your liver mets were found. I hope you’re doing well.

  • Bliss58
    Bliss58 Member Posts: 938
    Options

    i-beat-it, thanks for the Komen MBC virtual conference suggesions for Sept.-Oct. and I'll check them out. I'm very happy to see Komen finally put more emphasis on MBC than in the past.

    Re: cysts and liver mets looking different. I was told for several years after diagnosis there were cysts in my liver, then in December the radiologist read my CT to say he thought I had liver mets that may have previously been read as cysts. Sure enough, he was right about liver mets. I had only CTs for several years, so who knows how long these may have been misread as cysts.

    D37, welcome! So odd when the BC isn't found in the breasts, but elsewhere first. Glad you finally got a dx and the Taxol cleared your digestive issues.

  • kbl
    kbl Member Posts: 2,765
    Options

    Bliss, that’s what I’m afraid of. They say it was a cyst, and they only mentioned it in one CT and haven’t mentioned it since.I don’t trust most imaging. Hopefully I’ll be approved for an MRI, which seems to be the only imaging that works for me.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
    Options

    Since being diagnosed De Novo last year, just wondering how often should one be scanned. Currently I'm on a 4 month scan with PET/CT scans. I'm concerned about the high radiation exposure. Is it worth the risk, or another way of saying is there low radiation scans? I would not want to have a secondary cancer due to high radiation exposure, which is supposedly rare but nonetheless it is a concern. I recognize that not all folks tumors show up on certain scans. So just trying to figure this out or shall I go a long with the MOs plan re of the high dose radiation exposure. Appreciate any thoughts on this matter.

  • illimae
    illimae Member Posts: 5,616
    Options

    Tinkerbell, I’ve been stable for 3.5 years after chemo and I get scanned every 3-4 months. I know others who have reached NED and they’re scanned every 6 months to 1 year.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
    Options

    Illimae: Do you know what type of scan you receive? It seems these FDG PET/CT scan have a really high radiation exposure.

  • kbl
    kbl Member Posts: 2,765
    Options

    I've been scanned every three months since my diagnosis. I think I've had four. I've had two PET/CTs in that time that do not show my cancer and I want to say four CT scans, which also don't show my cancer. I'm going to ask for MRIs only now. They are the only thing that show my cancer.

  • illimae
    illimae Member Posts: 5,616
    Options

    Tinkerbell, I have bone and brain only mets, so I get the body CT, Bone scan and brain MRI. No PET because no body organs are involved. Personally, I don’t worry much about the radiation effects because I’ve already had targeted bone and brain radiation and I feel like it’s more important to catch and treat new stuff early. I get your concern though.

  • snow-drop
    snow-drop Member Posts: 522
    Options

    I get ct-scanned every 2- 3 months, since diagnosed last year around this time. it is really related to where the tumors are located and your MO. Got Bone scan last year, and few weeks ago due to TM situation. MRI every 3 months of spine, because plenty of bones now pregnant with tumors, ie. Massive progression, andone of my vertebrae fractured and tumor spread to cord, so it has to be monitored. I must get a pet scan for the first time but due to body weakness I postponed it for another time. I have a burning skin around my chest under my breast and upper belly. It can related to scans? Or radiation treatment I got last year? Who knows?

    Ref to discussion about liver, it showed a mass in my liver from the first scan then mri, was suggested a biopsy but my MO didn't agree. Ever since radiologists call it benign! I guess because it hasn't changed.

    I hope everyone is doing great..


  • Rosie24
    Rosie24 Member Posts: 1,026
    Options

    I get ct scans every 4 months and so far have had MRIs once a year and bone scans once a year. My mets are liver only. I’m not crazy about the amount of radiation either but I figure knowing what we’re dealing with is important.

  • illimae
    illimae Member Posts: 5,616
    Options

    Quick clarification, my bone scan was yearly but I’m in a bone radiation trial, so the trial people ordered them more frequently for now.

  • snow-drop
    snow-drop Member Posts: 522
    Options

    illimae, best of luck. It is nice to see your post here, I hope you are doing well. I am looking for any effective treatments trial or none trial to get some stability with this bone mets. It would be helpful if you can a little explain about the trial you are in.

  • illimae
    illimae Member Posts: 5,616
    Options

    ibeatit, absolutely! The trial is called EXTEND at MD Anderson. It’s basically to see if there is any benefit to radiation of minimal bone mets while on systemic therapy vs. systemic alone. I had 3 sessions to my hip bone met. I also have brain mets but luckily I wasn’t excluded for that.

    image

  • snow-drop
    snow-drop Member Posts: 522
    Options

    thanks illimae :) I am sure you will get positive results.

  • olma61
    olma61 Member Posts: 1,025
    Options

    hi there, about scan frequency- I have PET/CT Scans vs. CT and bone scans for two reasons , PET was the first scan ordered for me so it’s “baseline” which I was told makes subsequent comparisons better/easier/more accurate, and, second , because I have read, and even my insurance company agrees, that PET/CT is preferred for detecting bone Mets.

    My first scan was three months in to chemo and I was “almost NED” with significant shrinking and low metabolic activity, next scan in three months I was NED.

    At that point, doc changed scan schedule to every six months and we talked about going to every 12 but I didn’t yet feel comfortable with that.

    However, there was about a nine to ten month interval for my last one because of COVID. I was due in April and I had an appt in April, but I chose on my own to cancel. I am considering doing a 12 month schedule now, just to reduce anxiety. We did catch some activity on my met to L1 last year and I had it radiated, so I am still a little iffy about scanning just once a year.

    I asked my MO in the beginning if radiation from PET was a concern and if CT and bone scan was “safer”, she said that a PET did involve more radiation exposure but it wasn’t too concerning.

    Long story short, accurate and early detection has to be balanced with concerns about “scanxiety” and radiation exposure.

    Although, medicine says catching new Mets early when you’re already metastatic doesn’t matter, I think it does since I do not want to end up with fractures in my spine.

    Hopefully you will reach stable/NED and can increase your scan intervals a bit.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
    Options

    Thank you to everyone who responding re frequency and type of scans you receive. I'm scheduled in October for a PET CT scan. For now I'll leave as it is until after my appointment with my MO. I never had a bone scan. Maybe this is something I should inquire about due to my spinal bone met. Typically my mind set is less then more. However perhaps I need to flip my thoughts on this situation. Its interesting to see how everyones case is individualized with scanning. Sometimes the skeptic in me wonders if it's about the hospital receiving a lot more reimbursement for PET CT scan then a CT scan. I would hope my MO would not fall into that trap. Then again hospitals are about making money. In any rate thanks again for the feedback.

  • sondraf
    sondraf Member Posts: 1,609
    Options

    Has anyone had local therapy to the breast tumor?

    As per usual, I received a letter yesterday with the summary of my MO discussion in August - the one when I finally got an in person because I was worried about the nipple retracting even further. This letter is copied to my GP and I am assuming things are also transferred digitally. At any rate, the final sentence was about how the nipple is permanently retracted now (well it has been since the start soo...) and we discussed local therapy if post scan warrants it. Other than the fact we did nothing of the sort, has anyone here had local therapy for their breast tumor? I am assuming they mean radiotherapy, but like how much and how often?

    Still trying to move to the new doctor - this entire system runs on paper letters and its enough to drive you insane some days.