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De Novo Stage IV

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Comments

  • snow-drop
    snow-drop Member Posts: 565

    Sondra, local therapy is included surgery and/or radiation therapy. If they qualify you for local treatment then you should be happy, it means your systematic treatment has worked or tumor has shrunk enough. In total it is a very good news.

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Sondra: I know there is difference of opinion with local therapy to the primary tumor. However I will speak to my situation, that I had a lumpectomy, nipple retracted, and at that time was stage 2, didn't have ct/pet until a month later, preparing for chemo, but then it all changed when dx with Stage IV, one spinal met. Went to endocrine therapy, had SBRT to spine and then at the 6-7 month point, I had radiation to the primary site (left breast), for I had several positive lymph nodes with extension. At this point who knows if the additional tx will help me in the long run. However I don't want to be looking in the rear view mirror, and second guessing. If offered local therapy, why not go for it unless there is a convincing argument otherwise... I am grateful for the ladies on another thread validated my concerns but ultimately it's up to you and your team. Good Luck with your decision.

  • Rosie24
    Rosie24 Member Posts: 1,026

    I had lumpectomy & radiation (25 sessions) after shrinkage on I/L. I know it’s not standard of care for MBC, but my new MO said she would have recommended the aggressive approach for me too. Sondra, I hope you can get this to happen if it’s what you want. 🌺

  • sondraf
    sondraf Member Posts: 1,700

    I very much want the surgery, heck at the beginning I was telling the surgeon look, just whack it off I don't care, don't want reconstruction, but with Covid and how backed up they are on the women who are "curable" Im guessing I would just be offered radiation. The breast tumor hasn't shrunk according to the scans at this hospital (from February, not from diagnosis), but let's see what happens with the next scan end of September, though I won't have an MO discussion until 15 October.

    I know NineTwelve had a further retracting nipple which was due to tumor shrinking but this thing still looks and feels the same size.

  • snow-drop
    snow-drop Member Posts: 565

    ok second opinion zoom session done. Not clear if she will continue with me or not. She listened carefully and reviewed all my reports and then said you got what you should, we continue with the current treatment until it works for you, don’t worry for something that has not happened yet, we know it will happen but there are a lot of other treatments that we will give you in time. I asked if any additional treatment can help, such as SBRT. She responded like same old, that radiation is given when there are symptoms like sever pain, numbness etc. radiation is not offering cure or shrinking tumors, it does kill cancer cells though. She continued with same story we all heard a lot that stage 4 is not curable but we control the disease until we can. Some stage 4s die in 2-3 years some are still around for 10 years. I burst to cry when I replied that I don’t have any family history so then I am not luckiest one if count on luck, she said she wished to be with me in my home and hold me.. Sweet.. I admit I never heard any of those nice words from oncology team since last year I diagnosed.

    That second opinion oncowas ounce of hope for me, not saying expecting miracle but I was hoping she could offer something. I cried after session like a river, I guess I have held this in my throat for long long time......

  • illimae
    illimae Member Posts: 5,743

    Ibeatit, if the SBRT rads you asked about would be for bone mets and you only have a few, you might see the the EXTEND trial is being offered near you. I just had rads to my hipbone without symptoms first but I was randomized to rads vs systemic only. The trial/study is to see if there is any benefit to rads for increased survival in oligometastic patients. Just a thought but true, it is not standard.

  • woodlands
    woodlands Member Posts: 72

    I awoke on January 1st of this year to severe pain in my breast (not very common). I found a hard lump. I had a biopsy, mammogram, bone scan, and MRI mammogram. The nurse practitioner did not read the bone scan result carefully, so she said I had breast cancer and it was in my lymph nodes. I was scheduled for chemo, mastectomy, and then radiation. I had a port put in and one round of chemo.

    Then someone in a different department noticed I had 6 bone mets. I lost all of my hair from the one round of chemo. I asked the hospital to pay for the chemo and port surgery because they misread my diagnosis. I have a note in my chart to never again have an appointment with the nurse practitioner.

    I told the oncology team that they need to slow down when reading scan results.I asked to have the port taken out, and was prescribed Ibrance and Letrozole for 6 months. My white blood cell count and neutrophils kept dropping, so my oncologist changed my Ibrance to 100 mg, and then 75 mg. Finally she took me off Ibrance, and now I am taking Verzenio to try and get my neutrolphil count up. It makes me much more tired than Ibrance did. Luckily just a little bit of diarrhea, which I cure with 1 tsp. of Metamucil mixed with Pedialyte.

    I am de novo, newly retired, just turned 63 years old. A hell of a year, as I began my retirement in a new home in the woods of Washington state in October, 2019. I am resilient, but I am bummed this happened to me. Really upset my plans. Luckily I have a supportive husband and a wonderful dog who naps with me daily. I have a bone scan and breast MRI about every 3 months. The bone scan shows a fading of the bone mets - which I have been told is good news..

    I miss Ibrance. I could tolerate the side effects much better than Verzenio. In hindsight I wish I would have gone on more drives while I was on Ibrance, as I had so little in side effects.

    I have a bone scan and MRI for my breasts this Monday, the 28th, and will meet with the oncologist on the 30th. I wish I just had regular breast cancer, like my mom had at age 50. She is still alive in her 80s. My tumor markers are in the 20s, so I should feel blessed that they are so low, and none of my organs are involved. I have bone mets in the usual places.

    My 24-year old daughter has very large breasts she has never liked. She told me that she will have a double mastectomy next June and become flat. I know it is so she has a better chance of not getting breast cancer, but I feel bad for her that she has chosen such a radical route. I support her. She likes to wear clothes that don't show her breasts, and is looking forward to being flat.

    I just hope I can live a long life with this diagnosis. I am very sad to have MBC. I just wish this hadn't have happened. I hope that the one round of chemo will help kick this cancer. I suppose I should feel grateful to just be tired in the afternoon and have to nap. I just wanted a new life as a retired person, and instead I have MBC. I love to watch a movie at night because I forget that I have cancer for a while.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,315

    i beat it,

    I admit to not keeping up with this thread very well but wanted to comment on the use of radiation. I had a single met to my upper femur. I had no pain or other symptoms. It was an incidental finding. I had rads to the met which has rendered it metabolically inactive. That was 9 years ago. I get upset when doctors tell patients that rads is just for pain relief.

  • Bliss58
    Bliss58 Member Posts: 938

    woodlands, welcome though I'm sorry you've had to join this club. I'm sorry, too, your daughter is thinking of such a drastic move at 24. Has she had genetic testing or is it she's fearful because of your and her grandmother's dx? I have a daughter who just turned 21 last month. Your good news to celebrate, is that you have bone only and fading is good news. With bone only, I trust you will have many, many more years to come. Even with organ involvement there is hope and many treatments available. Fingers crossed for good scans next week.

    I-beat-it, I agree with exbrnxgrl about rads to bone. Your 2nd said it kills cancer, and it does. I had rads to my left illiac and T11 over 4.5 yrs. ago, never had pain, and so far they are still metabolically inactive. The recommendation was from my MO, so there are differing opinions. Just tossing in my two cents experience. Good luck.

  • olma61
    olma61 Member Posts: 1,026

    I will add my experience with radiation to bone - when diagnosed, I had numerous bone Mets in spine and elsewhere. Was particularly jarring to think about cancer in my spine. But, at the time, MO said surgery isn’t possible and radiation is given only for pain or a met in a “risky” position.

    But - 17 months later, after I had responded to treatment and had just one spine met showing activity on PET, my MO suggested rads to kill that one little rascal.

    So - things can change, give it time. If there is just one or a very small number of Mets, and you otherwise respond to treatment, rads might be a possibility

  • sondraf
    sondraf Member Posts: 1,700

    Woodlands - I just came to this thread feeling very similar after reading some other threads on here about early stage ladies worried about mets or whatever. Or the recommendations to exercise and eat well and limit alcohol to help keep mets away - well, I DID all that and here I am. I've gotten better at squashing things down, but I hate that making major decisions now has to involve Frankenboob and The Mets. Why me, or why us? Why did we get the really short end of the stick?

    Regarding your daughter - I get that too. I had large, very dense breasts from teen years and as someone involved in a lot of sports, I just hated them. Hated them. Did the reduction as soon as I could at 20 and even then they said - well, are you sure you dont want kids? Because you can't breastfeed then as the ducts will be cut,nipple repositioned. Nope - don't want kids, sort this out. Had so much success my mom and then her sister in law both had reductions to alleviate a lot of pain. It was really really worth it - shirts and clothes fit better and I no longer felt like I had to hide them under giant shirts. Insurance paid for it and the surgeon did a wonderful job, and took off almost 3 lbs of tissue. You may want to explore that approach instead, if insurance aren't willing to go the whole hog on the desired mastectomy.

    Supposedly removing a bunch of that tissue should have lessened my risk but hey! here we are. Not bitter at all.


  • tinkerbell107
    tinkerbell107 Member Posts: 293

    I beat it- After my surgery for the primary tumor I made an appointment with oncology. Radiology and interventional radiology. Surprisingly all of them felt they could help me. To this day I will schedule if needed, Establishing a rapport was important to me. Perhaps everyone's insurance is different but I've not been denied with a MBC diagnosis, I'm not aware you need to be referred by a MO. it’s good to have more then one set of eyes or discipline looking at your case.

  • woodlands
    woodlands Member Posts: 72

    Interesting ideas about foods that might help. Free info this weekend only: https://squareone.chrisbeatcancer.com/encore-weeke...


  • woodlands
    woodlands Member Posts: 72

    Insurance will cover her surgery! She is going to a plastic surgeon that specializes in helping trans people, so you know she will be flat without problems. Thanks for your input.

  • snow-drop
    snow-drop Member Posts: 565

    illimae, thank you so much for sharing the trial, I studied the research and I hope I qualify for the study when it is available in California, fingers crossed soon. It is definitely a hope and I really want it.
    exbrnxgrl, I am thankful for your support and sharing your experience. I hurt too when oncs don’t accept facts that they don’t know yet. It destroys trust in many levels...

    Bliss and olma, sharing your experience gave me hope, thank you so much 🙏🙏 I did get radiation for a L-spine when it fractured, that time the RO told me that radiation would kill cancer cells. I must add I was in too much pain.
    Tinkerbell, there is a team that randomly looks at my reports but they see what they want to see.

    Before starting systemic treatment there were only one tumor 14 mm size in my L- spine and 2 very tiny less than 4-6 mm in my T-spine. after 6 months of starting treatment more spinal bones were involved. MRI showed Several progressions in t-spine and l-spine and growth in size of all tumors plus 2 Mets in epidural space while I was hoping a good response to treatment. RO and MO both agreed to “wait” and again stated radiation offers only for “pain management”. I am now in cycle 11, recent mri compared to 2 months earlier reported stable, which is good news, I “hope” no more growth and there will be a good treatment for bone Mets available soon.

    Ladies you are wonderful, mbc is a world of loneliness that no one understands us except us.

    Wish you all the best.


  • olma61
    olma61 Member Posts: 1,026

    Yes, I-Beat-It, radiation definitely kills those cells and a met will be much less likely to re-appear in the area that is radiated. There is also something called "abscopal effect" which is not really proven but in some cases, radiating one tumor in metastatic cancer will also cause other tumors in the body to shrink.

    https://en.wikipedia.org/wiki/Abscopal_effect


  • kbl
    kbl Member Posts: 3,010

    Hi, everyone. I’m sorry, I haven’t been here for a few days, so I may have missed something.

    Woodlands, I’m sorry for what you’re going through.

    I’m so glad everyone is keeping this thread going. I really appreciate those knowledgeable for answering questions because there are some things I have no knowledge of, like radiation.

  • shmc724
    shmc724 Member Posts: 1

    Thank you for this thread! I finally feel like I can relate to people. Every test I've had seems to surprise my medical team...but it looks like I am not alone. I was diagnosed with De Novo stage IV over this past summer.

    I had a routine scan in May of this year and enlarged lymph nodes were detected. A biopsy of the lymph nodes revealed cancer cells; nothing was seen in the breast. An MRI showed irregular vascularization in the left breast, and a biopsy was done, finding (+) invasive lobular cells and DCIS. Path reports were ER/ PR (+) and Her 2 (-). A port was put in and I was scheduled for chemo in June, further scans were done in the meantime "just in case". Many tests later, confirmed that I have Mets in my spine and questionable growths in my uterus and ovaries. Chemo was put on hold. I started Lupron injections to decrease estrogen production and Zometa infusions for the bone cancer. A hysterectomy was done a few weeks ago, and confirmed breast primary cancer cells in my uterus, ovaries and cervix. I just started hormone targeted therapy (Ibrance and Anastrozole) and so far the side effects are tolerable. They are following my CA 27-29 tumor marker and will rescan in 2 more months to determine if the current program is working.

    I live with my husband who is very supportive and have a son and 2 step sons that are grown and out of the house. I am self-employed, which has made taking time off difficult, because I do not have any paid sick time or disability ins. I would like to continue working, but do not have the stamina for the number of hours I need to put in to cover my expenses. Not knowing what the future holds is making it very difficult to make some tough decisions…

    I'm looking forward to connecting to people that "get it"! I positively believe that I do have time left to enjoy life, but am also realistic in the fact that I need to stop putting off the things that I really want to do!

  • ninetwelve
    ninetwelve Member Posts: 328

    Welcome to BCO, and the club no one wants to join. You'll find a supportive and caring bunch of people, a lot of good information, and a place to cry and cheer the ups and downs. As to working with a stage IV diagnosis, I did for six years. Now I'm at home full time, I love it. Except for the financial worries, it's great to be master of my own time, for what time is left. If there's something you really want to do, go for it. If you feel good enough to work, you feel good enough to go for a long deferred dream.

  • kbl
    kbl Member Posts: 3,010

    shmc724, so sorry you had to join this group, but welcome. Your story sounds like it was a surprise, like most of us de novo ladies.

    Please look for the SSDI thread as well. I know NineTwelve has had some issues, but as long as you have enough credits for Social Security Disability, you can qualify under what's called a compassionate allowance. You must be off work for five months before the payments would kick in. Please look it up. Maybe that will be a help to you. Stage IV is supposed to be automatic compassionate allowance.

    I applied and was approved in a week.

    Thank you for sharing your story, and I’m glad you found my post

    NineTwelve, any news about your situation?


  • Thankful3
    Thankful3 Member Posts: 1

    I was going in for a routine mammogram, but when they asked if I felt anything I said that under my armpits I think I may feel something. At the same time I was "COVID heavy" AKA - I had been eating crappy and drinking a lot of wine in boredom and gained weight - so I thought armpits must get fat too and that's what I was feeling :). They immediately said I need a diagnostic, but having had a diagnostic in the past where all was well I felt like it would be just another cautionary diagnostic mammogram with "you're fine".

    Well fast forward and two days before my 45th birthday I learned it was breast cancer...and as you all know the calls and test results just get worse from there. I learned it was in my left breast, my lymphs and spots in various bones. It's been 3 months of treatment and my first PET showed considerable improvement with "significantly" less (their words in the report) uptake for my bone mets and slight shrinkage of my breast tumor. Praise God for good results so far! I'm taking Ibrance, Letrozole, Lupron and get quarterly zometa infusions.

    I'm also mixing integrative therapies with the above - is anyone else doing that and seeing results? My PET was "really great" according to my doc, yet what is she comparing that to? Since diagnosis I've gone organic, eat vegan, juice, exercise an hour daily, no alcohol (maybe a glass or red wine every few weeks) and I meditate (that is the hardest one for my ADHD self). I'll keep doing these things regardless as I feel amazing as a result. I've lost 21lbs (that needed to be lost), my cholesterol went from 204 (been around that for 15 years) to 138, and I have tons of energy. I'm blessed in that I have zero pain and feel great, except there is cancer in my body :(. I'd love to hear from others who are doing integrative things to compliment their traditional therapy.

  • ninetwelve
    ninetwelve Member Posts: 328

    Welcome, Thankful. Those are some very positive steps you're taking. Life can be pretty good, even with this illness. One of the best things I did, which you did not mention on your list, was to see a therapist (actually a practicing shaman, but that's a story for another time) about the unresolved negative emotions I've been living with for decades. Lightening my emotional load was a big change that has, I think, helped me to keep going, when life around me has not always been so great.

    KBL, yes, I'm the one who was not granted compassionate allowance for my stage 4 diagnosis. It may be common to grant it, but it is NOT automatic. They cheerfully denied my SSDI and assured me, "you can still do your job with your stage 4 cancer."

    Hence, my economic insecurity. I am reapplying for benefits, and I hope things will go better the second time around.

  • kbl
    kbl Member Posts: 3,010

    I hope you get a better outcome. It’s nice how they get to decide how you feel. That’s crap. Please keep me posted. I am mad with you. It’s just not right.

  • olma61
    olma61 Member Posts: 1,026

    wow that is awful ninetwelve. I was refused my request to be excused from jury duty while I was still on chemo and the first reporting day was my chemo day. And I was outraged about that, so I am really outraged for you on this. It goes against their own rules, according to what I see on the SSA website!

    My jury duty turned out not to be a big deal. (We have a computerized reporting system now and I wound up in a group that wasn't needed so I didn't have to report in person it turned out...but I wouldn't have gone if I did) I also thought about showing up with my bald head and no makeup and looking like I dragged myself out of a hospital bed to be there...and then telling the judge how I was forced to miss my chemo appointment, in front of a room full of people 😂😂😂but I didn't get that opportunity

  • illimae
    illimae Member Posts: 5,743

    Sorry to hear this ninetwelve and olma. I was one of the lucky ones, I guess. I felt ok when I applied for SSDI but emphasized the SE's like fatigue, nausea, diarrhea and pain while not specifically stating that I currently suffered from them. I also faxed my FMLA forms to the court for jury duty and was excused immediately. This was before brain mets when I was bone only, maybe I just got some empathetic staff in those reviews.

    I have a terrible habit of saying “I'm good" but for these things, I've learned to stop doing that and use more medical terms, embellishing a little when I need to.

    Good luck.

  • olma61
    olma61 Member Posts: 1,026

    Yes, SSDI is an automatic excusal from jury duty where I live, probably receiving another type of disability benefit would be too. All I had was a letter from my oncologist saying I should be excused, but they didn't care, even though, in the written requirements to be excused, they included a doctor's note as proof of physical disability.

    My county is rather notorious for not letting people be excused -- but still, they caught me off guard with this. I thought being on chemo for Stage IV would be a good enough reason, but apparently not. My cancer center was in a different county and both the social worker and my doctor says all their patients get excused with a note in that county.

  • seeq
    seeq Member Posts: 1,183

    NineTwelve - what a bummer that is! I know I was going to be denied SSDI while I was still working a couple hours a day, but once I stopped working completely, it went through. I listed all my current and potential side effects (and how they interfered with my ability to work) from my treatment plan, and that I am terminal. I was also applying for disability retirement from my employer (which was harder), so I used the same info for both.

    Olma - that's just crazy! Who makes that decision? And who do they answer to? Sounds like a new story (you know, like "News7 on your side"). That just makes me so angry for you.

    KBL - Thanks, again, for starting this thread. It's a unique fit for us. I'm not the chattiest, but I stop by just about every day.

    It turns out I'm going to have my scan early. MO was tentatively planning on December, but my blood work shows elevated liver enzymes. We were also watching TMs, but those results take longer and aren't in the portal yet. I guess we'll find out if this treatment is working. I've been trying to acclimate to the potential for chemo. I have a trip to see my daughter - who lives on the other side of the country - planned for mid-November and I really don't want to screw that up.

  • snow-drop
    snow-drop Member Posts: 565

    I disqualified for ssdi as well, when I was in bed rest (my spinal bone fractured because of tumor growing), hospital social worker put me in contact with them but they said after carefully reviewing my application, considering my age and that after treatment completed I can back to work! The decision is I am not eligible blah blah In a very positive thought, I like the fact that they didn’t consider me as a terminal! I wish my oncologists share the same thoughts as they did and don’t remind me every time that my cancer is advance and not curable... just a joke...

    I guess I became claustrophobic all of a sudden, for recent scan they put me in sleep, I felt good after test but a bit fool when I saw the technician above my head waiting me wake up. Mylast MRI was disaster, they had to take me out of tube in the middle of test.. anxiety for test results, scanxiety, now claustrophobia, what else this disease put on us...

  • olma61
    olma61 Member Posts: 1,026

    wow these disability denials are awful! Have either of you ladies been able (Or willing) to appeal?

  • kbl
    kbl Member Posts: 3,010

    SeeQ, I'm so glad you stop by and are finding information that you can use.

    I would say for those denied SSDI, it might be time to consult an attorney. I know they would get a cut, but you deserve to be on it. I can't even imagine. Just a note. I applied through a human and never had to fill out paperwork. I was told that's automatically sent out, and after I applied with the person on the phone, that was it.


    I-beat-it, so sorry about your scan experience. It must be very hard.

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