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De Novo Stage IV

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  • kbl
    kbl Member Posts: 2,796
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    Iwrite, thank you for your story as well. I’m sure it was hard to think it was coming, just a matter of when. It’s really great to see so many doing well on the medication.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Iwrite: Re mammograms. Thanks for the validation. I was hedging against it. However I did email my MO this afternoon for feedback. Not sure why my BS has ordered a mammogram and ultrasound. I plan to reach out as well after receiving input from the MO.

  • kbl
    kbl Member Posts: 2,796
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    GlobalGal, wow, another unbelievable story. It's crazy how different each diagnosis has been in this thread. You are one of the few like me where no primary was ever found. Did you have thyroid problems before the diagnosis, like hypothyroidism or anything like that?

    Unfortunately, my diagnosis has been confirmed with three different endoscopies and biopsies, so no doubt here. That stinks they didn't have enough to do the other tests. I'm sorry about that.


    Sondra, I, like you, expected heart disease. Both my mother and maternal grandfather had bypasses.

    I do agree with the part of the diagnosis where if it was going to end up Stage IV in the end, I'm glad I didn't know until last year and didn't have to live through what some ladies on here have. The only thing I wonder is how long did I have it with no treatment, and does that mean I have less time in the end? I'm not sure if this is true, but Ive read that having it in the organs causes death more quickly than if it's in bone. Death either way sucks.I know we all want to have the medicine do its job and hold the progression back so we can enjoy long lives.

  • illimae
    illimae Member Posts: 5,655
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    Tinkerbell, no mammo/ultrasound for me either since scans would find anything new.

  • kbl
    kbl Member Posts: 2,796
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    Tinkerbell, can you let us know what they say regarding mammogram and ultrasound. I would appreciate it.

  • olma61
    olma61 Member Posts: 1,026
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    Hi again, ladies, thanks to KBL for starting this great thread & everyone who is contributing :-)

    I will chime in on mammograms for Stage IV de novo -

    The practice where my breast surgeon worked is where all my imaging was done, they did send me a postcard to come in for imaging again after six months but I was barely done with Taxol at that point & my MO said not to bother.

    After I was stable for about a year, my MO mentioned me that "at some point" I could start getting mammograms again.

    I think I asked her once again if I should go but at that point I was scheduled for radiation and we decided I should wait til that was over.

    I never really brought it up after that or thought much about it. I certainly could have called to the BS practice on my own and scheduled it. One one hand, I feel like I am running around to enough medical appointments as it is. Have to see a cardiologist, get ecocardiograms, then I was seeing an endocrinologist about my thyroid nodules, I had dental work done....

    But, on the other hand, I do get curious since my breast tumor is not detectable on scans. I wonder if it is "really gone" and would anything show up on a mammogram or other imaging. I do get PET scans too but there is a size limit below which a cancerous area would not be detected on a PET.

  • kbl
    kbl Member Posts: 2,796
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    Thank you, Olma. I’m so glad that this topic is giving us a chance to ask other questions as well, such as the mammogram question. Let us know if you decide to get one.

  • GlobalGal
    GlobalGal Member Posts: 29
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    Dear KBL,

    As far as my thyroid goes, I had Hashimoto's thyroiditis and took a low dose of levothyroxine for about 15 years before having a complete thyroidectomy for papillary thyroid cancer.


  • kbl
    kbl Member Posts: 2,796
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    GlobalGal, thank you for letting me know. I hope the hormonal therapy is helping keep the cancer at bay

    I’ve had hypothyroidism for so many years, I have no idea when it started.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Re Mammograms/Ultrasounds: MO got back to me this morning. She does not feel it is necessary. Often theorized that pet scans can not pick up mm Or tiny tumors. Then again in my situation it was missed regardless on mammograms and ultrasounds . Hope this helps if anyone is vacillating on a decision.

  • kbl
    kbl Member Posts: 2,796
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    Tinkerbell, that's good to know. I think it would probably be a waste of time in my case as well. Thank you for letting usknow.

  • hjernt
    hjernt Member Posts: 20
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    Hello ladies! This is my first post although I have been lurking on these boards since last December. Y'all inspired me and I have found my peeps! Smile

    I'm another ILC 'member' diagnosed de novo December 2019. My breast surgeon called it when I had my biopsy. I was 48 when diagnosed.

    I had a lump on my right breast in March 2019 that I showed to my gyno. She wrote an order for a mammogram which I promptly put off until November. Major denial. But it may have been the correct decision after all because my lobular cancer might not have shown up on the mamo in May.

    Here's why: When I had the mamo done, I told them I had a lump. We did both breasts and I was told that because I had pointed out a lump, it was policy to next have a 3d mamo and ultrasound. The mamo notes said something like 'the thickening was seen on previous mamos and is slightly larger'. My denial loved this. So on to the 3d and ultrasound. ONLY on my right breast. Left breast was declared clear (keep that in mind).

    So the 3d and ultrasound results were concerning. "I don't know what it is," said the radiologist. "But we are going to treat it like cancer."

    Fast forward to the biopsy. My breast surgeon looked at the ultrasound with me and said, "I think this is lobular cancer and I think it will be in both breasts". I was only scheduled to biopsy the right breast and one right lymph node. He asked if I wanted to biopsy both and I agreed (heck I was there and all set up for it, lol). BTW, the biopsy on the right breast hurt like hell. The lidocaine did nothing and I was shaking from the pain. The biopsy on the lymph node and the left breast went fine with hardly any pain. Sure enough, the biopsy results showed ILC in BOTH breasts. Of course the right was farther along but I will be forever grateful to my surgeon for getting the left biopsied as well.

    After that, I had a bone scan and a CT scan and an echo. I started chemo in January 2020. On the day of my first chemo, my MO got the scan results. CT was all good, Bone scan was not. About 9 mets in various places on my spine, ribs, femur, sternum. That, of course changed the treatment plan and I became a member of the stage 4 club. I was going to have TCHP (am triple positive) but he took out the C. I had 4 rounds of THP and thankfully that left me NED in my breasts according to the breast area MRI. Also seen the MRI, the mets on my ribs and sternum are greatly reduced.

    Next up is a lumpectomy and ovary removal, next week. MO believes I will have more success with an AI after losing the ovaries and BS is confident the lumpectomy is good plan too, getting any residual yuck out. Fingers crossed there is only one lymph node impacted if any but we'll find out with the dye on the day of sugery.

    Sugery is outpatient so still is ON! Even tho I am in Texas and the virus is terrible here.

    Loving this thread!!

    Heather

    P.S. I am on H and P infusions every three weeks forever. They are not bad in the grand scheme of things.

  • kbl
    kbl Member Posts: 2,796
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    Hi, hjernt. I’m so glad you’ve shared your story and that you chose this post to respond to.

    I can totally relate to loving your surgeon. I’ve thanked my gastroenterologist a few times because without him picking just the right slices from my stomach, I would still have no clue what was wrong. He seemed just as in shock as me when the results came back. He couldn’t find it in his heart to tell me and made my primary doc tell me. After the initial diagnosis, he’s called me after we do the biopsies since then.

    Please let us know how your surgeries go next week. Before I was diagnosed, I had a partial hysterectomy. I still have my ovaries.

    Thank you for coming in and responding. I really appreciate it.

  • olma61
    olma61 Member Posts: 1,026
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    hi hjernt and welcome to the forum

    I am another triple positive de novo gal

    Yes, please give us an update on your surgery if you feel comfortable , hope it all goes well for you

    Been on H&P for 33 months and tolerating it well. Wish you the same. I get the Herceptin shot now & perjeta via infusion...combo shot will be coming soon.

    Breast surgery was another thing my MO discussed with me, but neither of us followed up

    I am overdue for a scan...once I do that, I may talk to my new doc about these issues & get her perspective


    hope everyone is enjoying their weekend to the extent possible x


  • snow-drop
    snow-drop Member Posts: 526
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    Thank you so much KBL for starting this thread, it is a need!

    I am a de novo too! Metastasized to spinal bone. Million times reviewed my lifestyle to understand why BC and why stage 4, I had a healthy lifestyle, sport, healthy food, no smoke but 2 stressful incidents happened back to back before those events basketball hit my breast. I still can't understand which of those incidents caused MBC! My MO once said cancer was in your body for several years! I had an old lower back injury as sport activity, because of that mri recommended each year or every couple of years. So Less than 2 years before diagnosis mri was clean, I understood that mri for following up on mild disc injuries is way less-detailed than detecting cancer.

    (Because no family history, no breast feed I got advice that only physical examination is enough so I had not done mammogram never, only physical examinations time to time).

    Anyway, long story short, suddenly my breast shape became different, I was on denial phase, based on no family history, healthy lifestyle... stupid... mammogram and ultrasound showed abnormal solid malignant in breast and auxiliary nodes, biopsy done, and..... I diagnosed with IDC, I was sent to cancer clinic. Scheduled for standard treatment, chemo, surgery, radiation. However more tests run... I received a call from my MO office, because recent bone scans showed some other things you will sent for mri spine and chest and abdomen. A small lesion in liver, 3 lesions in lumbar and thoracic spine, one touched the bone wall. I remember that day when MO said it is stage 4 means the disease is not curable but treatable, you’ll live with it, you are not qualified for chemo and surgery will not bring any benefits. So Hormone therapy and targeted therapy are my only options. during this uncertain time one of lesions caused bone fracture and entered into the spinal cord. Radiation therapy supposed to be done for stopping the lesion changed to manage 10/10 pain of spinal bone fracture. Zometa administrated every month for 7 cycles.

    Unlike SondraF my breast tumor slightly shrank but lesions in spine never stop growing. I pushed my MO to switch to xgeva. I'll get the third xgeva shot next week, I am hopeful xgeva can stop those stubborn lesions growing.

    Here I am, cycle 8 ibrance with letrozole. Zoladex painfulinjection and xgeva shot every month.

    My concern is why spinal tumors have not responded to this treatment yet. Recent mri showed a lesion in T spine is touching the bone wall, exactly like the same report back in 9 months ago for another bone which ended up broken. I hope some of you with same condition will share your experience, I searched a lot to find some other methods for treatment of spinal bone tumors. In my next visit with MO I want to raise this issue again and ask for a second opinion if he doesn’t get me any clear answer.

    Thanks for reading this long post.

    Julia.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Julia: If I'm reading this correctly you didn't receive radiation yet? I had SBRT to my spinal tumor, 3 treatments. Since then my pain and function has drastically improved. Recent studies have also demonstrated SBRT is the way to go for spinal mets. Please review the Sabr-Comet study.

    I also met with the IR folks and they offered vertebroplasty.

    Hopefully you find something to relieve pain and responds to your tumor.

  • sondraf
    sondraf Member Posts: 1,631
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    Julia - Interesting that you also had an 'event' with a direct blow to the breast. In 2016 I had a major crash on my rollerskis - while going about 10 mph down a slight hill I misplanted my pole on the inner ski and just FLEW. Like I remember thinking mid-air oh god, this is gonna hurt. Cancerboob took the brunt of the crash as I landed on it first and then my opposite knee (which thankfully had kneepads on), and I was able to get my head and chin up enough that I only cracked my helmet and not my skull or face. The clinic doctor swore up and down that there was no connection, but you can't help but wonder.

    Hjernt - sometimes I wonder why they don't give all de novo ladies a quick hit of 'lighter' chemo to get the ball rolling. Like picking up steam downhill :). I suppose its so that they can 'save it for later' but why not lessen the tumor burden at first and then maintain? Do let us know how your surgery goes!

  • kbl
    kbl Member Posts: 2,796
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    Julia, I’m so glad you find this topic helpful, and I hope you find relief and some help from the ladies on this thread. Thank you for telling us your story.

  • snow-drop
    snow-drop Member Posts: 526
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    Thanks ladies for your warm response. Tinkerbell, great information, I’ll discuss them with my MO this week.

    A challenging question, since we are all de novo, what was your ca27-29 level at first test, specially for those of us on Ibrance+letrozole combo.

  • olma61
    olma61 Member Posts: 1,026
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    hi Julia- I was getting CEA and CA 15-3 since diagnosis. Both were in normal range before treatment and during...except for a few times when the 15-3 was a little bit over normal (30 ish).

    My new MO uses the 27-29 test, I have only had it once, the result was 30, within normal range.


  • Partyoffive
    Partyoffive Member Posts: 53
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    Hi everyone

    I was diagnosed 7 years ago de nova with too many bone mets to count. I was 43 with no history of cancer of any kind in my family tree-we had heart disease and my mother had died at 50 from a heart attack so I’d been seeing a cardiologist faithfully every year. I mentioned getting a mammo to my gyn and he gave me a script in April on Mother’s Day that same year our horse head butted me in the chest and when I pressed on my breast after he hit me I felt the mass and knew immediately that it was malignant and that it was bad. Sucks to be right sometimes but I was right and thank god that horse hit me-maybe he knew and was trying to wake me up. I was on tamoxifen for 61/2 years with normal tm’s and last year my tm’s went up and up and up. 4 pet scans and two biopsies later they still are stable but I made the decision to switch to ibrance and my tm’s haven’t dropped but they haven’t gone up so I’ll take that as a win. Last pet in May was stable as well!

    Kristin

  • illimae
    illimae Member Posts: 5,655
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    Julia, I only get CA 15-3, which was 17. I had a single hip bone met at diagnosis.

  • kbl
    kbl Member Posts: 2,796
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    Julia, my MO does all three tumor markers. My 27-29 was 491.2 the first time and is 313.0 now. Not a huge drop after a year, and it has gone up and down throughout.

    Back in 2016 they tested them when they thought I had Multiple Myeloma and it was 80, which should have alerted someone that something was amiss.

  • kbl
    kbl Member Posts: 2,796
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    Partyoffive, thank you for your story. I have heart disease in my family as well. I’ve read someone else say that too. That seems like a coincidence for the three of us. No history of breast cancer in my family either.

    I’m so glad your horse helped you find your cancer. You never know what animals know. They are amazing creatures.

    I’m so sorry your mom passed away so young.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    Re tumor markers: I only ever had them once which was Ordered before starting treatment, I/L. My 27.29 was 79. I asked my MO about ordering another test for comparison. She didn’t order the initial TM, my BS did. MO is against TM test mainly due to the unreliability plus the anxiety it has caused her patients over the years. Hence we go by how I feel, lab work and scans. This has worked for me. I have enough with scan anxiety. I don’t need the stress of watching TMs. So I know there are different opinions on TM. No judgments

  • FosterKittenMum
    FosterKittenMum Member Posts: 10
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    Julia, I am in a different situation to as I am HER+ but my tumour markers Ca 15-3 were 1894 on diagnosis. They dropped rapidly during chemo and were within the normal range after two treatments And have remained in that range for almost three years now.

    Tinkerbell, my oncologist believes that if tumours markers appear accurate from the start, they tend to remain accurate. My tumour markers have always correlated with my scans. But she also believes that if they were not accurate from the start then they should not be done on a regular basis due to the reasons you outlined above in your post. She also does not think that mammograms are necessary for me. I only ever had the one which was showed nothing even though I had 5cm of DCIS plus IDC and extensive bone Mets


  • kbl
    kbl Member Posts: 2,796
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    My MO does TMs every visit. I do not get anxiety with seeing the numbers because since I've been on Ibrance, even though they haven't gone to normal, they haven't gone up multiple times in a row. I'm grateful for them because imaging has not shown the cancer at all. It's one of the only ways for me to know if things are semi okay.

    When I had my first CT after four months on Ibrance and Letrozole, the findings said no evidence of metastatic disease, so I thought I had gone to no evidence of disease. Not true at all. The cancer is still in my stomach and now in three places instead of two. I am a case. Lol

    I just got back from a lumbar and pelvic MRI with and without contrast. That was fun not moving for an hour and 10 minutes. The last one was in 2016, and I've never had it with contrast. Since this is the only test that's ever mentioned I could have had cancer, I wanted to see what's happening back there. We shall see. I've only been diagnosed with it in my stomach.

  • kbl
    kbl Member Posts: 2,796
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    Cross post with a different thread.


    Had an MRI with and without contrast today of my lumbar and pelvic region. A different radiologist read each report. I'm sitting here on my second beer. It's not because I'm worried about what's to come. It's about the total difference between scans, biopsies, and more scans. I just can't with all the differences. I've been dealing with this crap since 2013. Can someone in the medical world please tell me what the F*** is going on with my body? Rant over.

  • hjernt
    hjernt Member Posts: 20
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    Hello ladies! Just popping in to say a quick Hi and share that my surgery is ON for tomorrow. I have to be at the hospital surgery center at 7am. My first appt is at 9am for dye injection, then another one at 10am. Surgery starts at 12:30pm and will likely last for 3.5 hours with both the lumpectomy and ovary removal happening one after the other. I'll try to post on Thursday to give an update.

    I'll look up my first tumor markers numbers. I think my MO looks at 2 or 3 different ones. They went down due to chemo and have stayed stable so far. They test every 3 weeks when I have HP treatment.

    Heather

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    hjernt- in your pocket tomorrow for your surgeries.