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De Novo Stage IV

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  • 42young
    42young Member Posts: 124
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    Hi, another De novo here. 18 months in & currently stable on Ibrance. Hugs!!

  • snow-drop
    snow-drop Member Posts: 526
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    Hi Bliss, thanks for sharing your story and I’m glad to see you here, and I am so sorry to learn that you got progression after such good time being nead. I hope your oncologist gives you an effective treatment and that all the progressions disappear very soon.

    I was thinking I had some similar experience when I was reading your story. Several years back a blood test showed I had severe iron and vitamin d deficiency, that caused heavy period, lower back pain (later understood it is related to a disc problem) and I did endoscopy which was clear. When I was diagnosed mbc mri showed there is a lesion in my liver but radiologist called it as benign. I had few sharp pain in my chest back in March but the MO didn't take it seriously. and on cycle 8 I/L the both TMs jumped up high, the MO thinks of progression, last scan was 3 months ago, no sign of progression or radiology errors etc???

    I joined mbc club November 2019, despite I learned a lot, still many things I need to learn. just recently I noticed people in different threads said they have been on first line of treatment, why it is important staying in first line?

    I ask this question because I am thinking of benefits of consulting with another onc as second opinion, and most definitely the new onc will suggest a different treatment.
    thanks

  • kbl
    kbl Member Posts: 2,798
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    42young, welcome, although I know this is a group you’d rather not be part of. So glad you’re stable. Hugs back to you.

    I-beat-it, I’m not quite sure of the answer to your question, but I would assume they want as long as they can get on first-line treatment because if you have to switch, maybe the next lines won’t work as well. I may be way off here, so someone will correct me if I’m wrong.


  • cyathea
    cyathea Member Posts: 337
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    KBL I'll add my story to the mix.

    BC was not a surprise to me. I expected it and I joined a "dense breast" clinical trial to have an ultrasound and mammogram for 2017, 2018 and 2019 just to be sure to catch it early. My mother, sister and two maternal aunts had BC, and my one maternal aunt who didn't get BC got colon cancer. We do not have the BRCA genes, but that history made me very careful. So, I expected cancer at some point, not yet, but thought it was very likely to happen as I got older. Everyone in my family has done very well with their BC treatment. (Yay! Surely, I would be like everyone else in my family.)

    I had a mammogram/ultrasound in May last year and a biopsy confirm ILC in June. (My mammos never showed any cancer. The ultrasound picked up a suspicious shadowing in the same area that had been biopsied in 2016.) An MRI in early July told me that I had cancer in not just my right breast but both breasts and lymph nodes (Yikes!). AND my right tumor was not 1.3 cm but 5 x 3 x 5.4 cm. (Seriously?)

    My biopsies painted a rather strange picture. My first biopsy indicated that my lobular cancer had "signet ring" characteristics. (Usually signet ring cancer is found in the GI tract.) My MO didn't think much of this, but the literature I read didn't indicate that this was a good thing. Being HER2+, the cancer was considered an "aggressive" cancer, but my Ki 67 was low, meaning that it was slow growing. My subsequent biopsies showed that I had both ductal and lobular cancers. My cancer was a bit of an oxymoron. (This was not a good start to my journey.)

    A CT on 7/19/2019 found, "No suspicious lytic or sclerotic osseous lesions are present to suggest osseous metastases." Finally, some good news! (That didn't last.)

    I had completed 2 difficult cycles of TCHP in July and August when my liver issues sent me to the ER and prompted my doctor to do a CT. In September, the CT report indicated: "There is a 1.3 x 1.3 x 1.5 cm lytic lesion within the right posterolateral T11 vertebral body . . . which is new from 08/19/2018. An additional smaller subtle lucent lesion measuring approximately 0.5 cm within the right anterolateral superior T12 vertebral body is also new. . ." (You've got to be kidding me!)

    I'm not sure why they compared the lesion to a CT that I had in 2018 versus the one from July/2019. Regardless, I went from thinking that I probably had Stage IIIB in July to knowing that it was Stage IV in September in the middle of neoadjuvant chemo. (It was not a fun time.)

    I consider myself De Novo because a bone lesion was found before I finished chemo and had my surgery, but some might say I just had an early progression. Even though no one wants to have MBC, I feel like I'm lucky (so far) to be considered "oligometastatic" with only the 1 bone mets that was healed through the chemo. My MO went to bat for me when they discussed my case at the tumor review meetings. He is optimistic and felt that even though I was technically Stage IV, that I should proceed with surgery and radiation because this would give me a better chance of avoiding progression for a longer period of time. (Many doctors feel that Stage IV people should not be offered surgery because the cancer is already in the blood and is systemic.)

    I am 52 now. I think I'm young (but getting older quickly). Chemo took my hair and it came back with far more gray than I ever thought I had, but who's to say when I faithfully colored it every four weeks before I was diagnosed. Winking

    I'm trying to live like I have a decade or more of life without progression in front of me while still trying to plan and prepare for things to go the other way.

    Thanks to KBL for starting this thread and thanks to all of you for sharing your stories. I enjoyed reading them. (Sorry if mine was a bit long.) Even though I wish all of you were not in this boat with me, since you are, I'm grateful for the company.

  • illimae
    illimae Member Posts: 5,657
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    I beat it, KBL is correct about the first line treatment. Typically, the 1st works longest before cancer develops a resistance, so getting as much time as possible before moving to the next therapy has an overall benefit. I’ve been mostly stable on Herceptin and Perjeta for 3.5 years but the average time to progression was 18 months last time I checked. If I’m lucky enough to beat the average with each treatment line, that really adds up to years and I want many more good years.

  • kbl
    kbl Member Posts: 2,798
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    cyathea, wow, what a journey you've been on. I'm sorry you've been on such a roller coaster. I can't imagine what it feels like just waiting through the years knowing you were most likely going to have cancer. I hope you're feeling better now and your treatment is working. Thank you for sharing.

  • snow-drop
    snow-drop Member Posts: 526
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    illimae, thanks for your response and useful information. I am sure you will beat it and get very good results 👍🏻

    KBL again thank you for this thread, a great place for discussion for new/ de novo who face a new unknown world 🙏 .

  • kbl
    kbl Member Posts: 2,798
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    I’m so glad that everyone is liking a place to talk about our de novo diagnoses. It’s been great reading the stories.

    I have a question that I’ll ask this smaller group of ladies. I am one who believes in my tumor marker numbers, simply because scans are not that helpful for me. I got my blood results today. They pull blood for tumor markers monthly, the CEA, CA27-29, and the CA15-3. I know some ladies say their doctors don’t test for them or that they don’t rely on them, and we don’t rely on them totally either. For the most part, they are lower than when I started, and my doc does not seem concerned at all, which is fine.

    Here is my question. I’ve been on Ibrance and Letrozole for over a year now. Although my numbers have dropped, they haven’t dropped a huge amount in the long run.

    I’m wondering why they aren’t dropping more than they are. I know that may sound selfish. I should be happy they’re dropping. They kind of flip-flop a little each month, which doesn’t concern me, but I don’t understand why they’re not moving even more. I’ll list the numbers below.

    Is there anyone else here whose numbers started high and have just crept down this slowly? Did yours start high and go back to normal? I do feel since they are coming down that the meds are working. I guess I’m more curious than anything else.

    My 15-3 started at 220.10 and is now 114.9.

    My 27-29 started at 491.2 and is now 305.3.

    My CEA started at 7.2 and is now 6.9.




  • illimae
    illimae Member Posts: 5,657
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    KBL, I doubt I’ll be very helpful but mine have been in the normal range (specifically 12-28) since my MO began checking, which was after chemo. I don’t know if my results are inaccurate or if it’s because I have minimal disease (single bone net and occasional tiny brain tumors) but I thought the big tumor market drop usually happened as a result of traditional chemo. I’m not familiar with ibrance (because I’m HER2+) but I assumed it was more of a steady therapy rather than an assault to the body like IV chemo. Just my thoughts.

  • kbl
    kbl Member Posts: 2,798
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    Thank you, Ilimae. I shouldn’t want to rush them down, but I guess I’m just hoping that it’s not because it’s elsewhere as well. I do know the tumors in my stomach are still there from the endoscopy last month, so maybe that’s why. I appreciate your thoughts on it very much.

  • snow-drop
    snow-drop Member Posts: 526
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  • kbl
    kbl Member Posts: 2,798
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    Thank you, I-beat-it. That’s a good explanation of the tumor markers.

  • hjernt
    hjernt Member Posts: 20
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    Hello! Thanks for checking on me!

    I am recovering well although I ended up with a large seroma under my right arm which was drained last Monday (200 cc's). Such a relief to have it drained and he also took out some fluid around the lumpectomy incisions. I am going back on Friday to have more drained thankfully since it is starting to fill up again. I have been using a heating pad and keeping a rubber ball under my arm with the hope of keeping it from filling up as much.

    Aside from that I have no issues other than stiffness in my arms and shoulders and a little soreness from the ooprhectomy. I have a follow up with the other surgeon tomorrow and am hoping to get cleared to exercise more. BS agreed I could start to increase exercise as long as it was gentle and didn't hurt. I am hoping that will help clear out the lymphatic fluid.

    The update from the BS is that he did find some other small pockets of cancer in the right breast which he took out. 6 nodes were removed on the right because they showed "hot" but only one had cancer which was "dead" from chemo. This was known from previous scans. He said they don't usually put in drains when they take out a small amount of nodes but if we can't get the fluid under control that is an option. Guess I'm an overachiever fluid maker! I have some fluid and swelling under the left underarm but it is a lot less and we are going to just let it be reabsorbed on it's own.

    I am very happy to have had the surgery and very glad the docs all agreed it was beneficial even with the bone mets. I asked the BS stright out if it was worthwhile and he said yes because that is the origin point of all the cancer. It is best to clear out all we can. I will be treated forever which should help with any new growth (until it doesn't). Speaking of which, I have my next H and P treatment next week. I meet with my MO right before and will get an update on starting an AI.

    One other update. I have noticed a change in my hot flashes. They are less frequent and I feel less sick right before. Not gone but better. I am taking Effexor to help but am really hoping now that I am officially in menopause that in a year or so these terrible things will go away. I have acupuncture in a couple of weeks which is another way I might get even more relief.

    Hugs to all and I am enjoying this thread!

  • kbl
    kbl Member Posts: 2,798
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    hjernt, thank you for the update. I’m sorry you’re having issues with fluid. Nothing can ever be simple, can it? I’m really glad you feel you made the right choice,

    Regarding hot flashes, I’m really happy you’re having fewer. I had a partial hysterectomy in 2012, and the hot flashes have been there since. They haven’t gotten worse with the Letrozole, but I wish they would just stop already. Some people can have hot flashes long after menopause, and I guess I’m one of the lucky ones.

  • Bliss58
    Bliss58 Member Posts: 938
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    hjernt, very sorry to hear your fluid issues and hope they'll get it resolved for you. I echo being glad you feel you made the right choice. My surgeon said the same as yours, that she thought it best to get rid of the bc origin. Best wishes for continued smooth recovery.

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    hjernt: After your recovery did your team recommend radiation? Radiation is a controversial area. I did it with reservation, basically to clean up what may of been lurking despite not having any signs of the same. Hopefully I made the right choice. Finished the radiation in April. I have some tightness in the supraclavicular area but was made aware of post radiation side effects.

    Take care and be well...

  • hjernt
    hjernt Member Posts: 20
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    Tinkerbell, my MO doesn't think Radiation is necessary since I'll be continuing with H and P. However, never say never! At any time it could become a good option so I just am rolling with it. I'm not opposed to it. Every little bit to get rid of more cancer yuck is good.

    Bliss, thanks for the good recovery vibes!

    KBL, Hot flashes are the worst!! I have been dealing with them for years. Finally got them under control and boom, cancer. Probably feeding the cancer with all the stuff that helped the flashes, oy. Damn hormones! So I am really happy to have the ovaries gone. Will ask my doc at the follow up tomorrow if they found anything interesting in there. Still amazed at how they only put in 5 small incisions. Ovaries come out of the hoo-ha, will wonders never cease. 😄🤭

    Next week I have an echo, appt with MO and treatment. This week was all the follow up post surgery appointments. I'll be glad to be done with doctors for a few weeks after!

  • sondraf
    sondraf Member Posts: 1,631
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    hjernt - thanks for the update! I don't agree with my team's assessment (or rather, the random collection of people that look at my chart occasionally) either for the primary to stay in and want it out. I can understand getting the cancer under control in the first instance with I/L, which it has done well for my mets. I think I will give it until the next set of scans to see if it starts decreasing the primary too and in the meantime start lining up second opinion/new option. Frankly as I am being treated currently on the NHS I think it came down to funding and treatment algorithm in this trust, but at the same time while they won't operate they offered me egg freezing and future IVF. Like in what world does THAT make sense?

    Rosie24 had hers out as well this year - maybe its an HER2+ thing?

    If you could keep updating that would be great!


  • kbl
    kbl Member Posts: 2,798
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    Yes, hot flashes are horrid. I have never counted how many I have during the day. The ones at night where I wake up soaked are the worst. Those are thankfully few and far between. Sometimes I know they’re coming because for some reason I have about a 40-second really anxious moment right before. I don’t know what the heck that is. My husband will ask what’s wrong, and I’ll say, a hot flash is about to happen. So weird. 

  • snow-drop
    snow-drop Member Posts: 526
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    ok, scans reports out, took more than expected which made me worry. diffuse infiltrative left breast mass in the retroareolar region, which I guess causes nipple retraction,Calcified granuloma and small pleural tethering in left and right lobes, sclerotic focus at vertebra...MO replied to me in a very short message(!) that he is suspicious of more bone Mets, so bone scan and mri to go... great.... even I don’t know what to say....

    SondraF, well said, I like this phrase: ... a bunch of random folks occasionally look at my chart...

    please help me how to get a second opinion: process, medical records, insurance, find a good doctor, whatever you think it would be helpful to know, I appreciate it

  • kbl
    kbl Member Posts: 2,798
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    I-beat-it, I’m sorry there may be more bone mets. I don’t understand anything from the report. I hate when they don’t speak in layman’s terms. 

    I believe you’re asking Sondra about info on second opinions, but I did have a second opinion when I was first diagnosed, and if you make an appointment with a doc, they should gather the medical records and everything they need to look at before your appointment. You shouldn’t have to do that. You’ll probably just have to sign a release for them to get them. 

  • olma61
    olma61 Member Posts: 1,026
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    I-beat-it - Sorry to hear about those scan results. I read back in the thread and I see you asked about other solutions for spinal mets. If you have pain, fractures or if you’re in danger of them, radiation to the spine can be done. Good luck with the second opinion, I second what others have said. I recently switched MOs, I didn’t have to do anything as far as gathering paperwork, etc. I just called the intake office at the new place , asked my questions, and they did everything else.

    hjernt - thank you for giving us the surgery update and sorry about the seroma. Hope you’re getting good rest, and heal quickly.

    I had my six month PET SCAN today, overdue because of COVID, it’s been about ten months since the last one. I am going to have a three week wait to see my doctor again to go over the results though. Bad scheduling on my part. She is on vacation until next Friday : ( and I don’t think my results will be in the patient portal. My old doctor would have the nurse call if results were good, I didn’t ask if new place does this. I will call them maybe tomorrow to ask. I am trying to just be chill and not get caught up in anxiety. Fingers crossed.

  • snow-drop
    snow-drop Member Posts: 526
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    KBL and Olma, thanks for your response and information on getting second opinion. My insurance will cover only the network that I am currently in so second opinions might be one of my MO’s colleagues which they never say anything against his treatment/ mistakes(?). I guess I should go on my pocket.

    I/ we know radiologists write the reports in the way no one can understand to avoid future blame. It took me good time spending on google, meaning: primary (breast) tumor is spreading to near chest wall, which is not a good thing, nipple retraction makes sense now, SondraF make sure you ask your MO about it. Lungs are developing another disease, I guess it related ibrance side effects. sclerosis or blastic lesion is more advanced than lytic lesion, radiation is offered only for pain management and for more soft lesions.

    Hjerntstay well, olma 🤞🏻


  • sondraf
    sondraf Member Posts: 1,631
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    Julia -sorry to hear that the scans aren't breaking the way you need them to break. Is your nipple retraction new? Mine has been from before diagnosis, it just seems a bit more retracted in the last 4 weeks (but corresponding to significantly increased exercise). I've got three weeks to my next MO appt, but I think I will flag now to the nurse to ensure that I can get in person visit for someone to feel around on it and just have a look.

    Do you physically feel well otherwise or any pain?

    For a second opinion, at least here I think you have to round up your scans if you are going outside the NHS, otherwise if you switch trusts just different doctors under a different funding scheme can access all your information (I think). However, I imagine in the US it would be faster and easier to obtain your scans because its not one behemouth health system. You may want to look into second opinion services through MDA or any of the other big centers - they seem fairly affordable if you have to pay out of pocket for some new eyes to consider your chart.

    Oddly enough, while the nipple seems a bit more retracted, a rash that I have had on the opposite-to-cancer elbow since early 2018 is now almost gone, without any special creams or daily lotion, etc. I always thought it was psoriasis or eczema, now I wonder if it was the former, but related to the cancer somehow (due to inflammation?).

  • hjernt
    hjernt Member Posts: 20
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    Hello friends!

    Another update that I am now the owner of a drain under my right arm. Fluid came back and as much as I tried to heat it, etc, BS said it needed a drain. On the one hand i am so glad to not have a baseball under my arm. On the other hand, the drain is a pain (lol). BS is hopeful I won't need it for too long. Sleeping tonight might be tricky.

    In other news, BS is pushing for radiation on the right breast. That has always been the bad breast. They found very small pockets of cancer in there which were removed but he wants to do everything he can to keep it gone. Also to catch anything lingering. He is going to discuss more with my MO. I'm open to anything that helps keep the cancer gone.

    And in yet other news, had my follow up re: the oophorectomy yesterday. All looks good but she said I really really cannot use my abs for another 4 weeks. I am a huge exercise nut so this is hard to wait. I can walk and gently ride the stationary bike but that is pretty much it. Now that I have this drain, exercising my arms is out. I am going to be patient but I will be walking many a long walk!

    Best wishes to all!

  • tinkerbell107
    tinkerbell107 Member Posts: 289
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    hjernet: As I said in my previous post my BS was advocating radiation. I'm glad to hear your team is now considering the same. If you proceed I wish you well.

  • olma61
    olma61 Member Posts: 1,026
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    Hjernt, treating it aggressively sounds like a good plan.

    SondraF - about the itchy rash, I have had an area on my forearm that gets itchy for no reason and with no rash or other outward sign of anything. This started well before I was diagnosed and it went away when I started chemo. It has come back lately and it sometimes gets so itchy that it has become bruised. I do wonder if it is related, my medication can also cause itching but it would be weird that it’s in the same spot as before.

    If it IS cancer related, well, I was walking around with this cancer in me for years before diagnosis.

    There is a type of rash that’s known to be related to (non skin) cancer but it has a specific appearance, I can’t remember the name right now, but it will probably come up in Google.

  • kbl
    kbl Member Posts: 2,798
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    hjernt, Thank you for the update. I'm glad the drain is helping. I know it's hard to wait to exercise those abs, but think of the time you'd be out of exercise if you ignore their advice. Hang in there. Four weeks will zoom on by. Giving your body a break isn't necessarily a bad thing. It may be even happier once you start back.

  • snow-drop
    snow-drop Member Posts: 526
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    SondraF, retraction is greater compared with what it was, a bit of pain sometimes comes and goes. I should have a serious talk with the MO, I can’t sit and wait until they decide, if they do ever. my next appointment is in 2 weeks, and of course mri and bone scan that should be done before seeing him. Regarding second opinion, I had a long discussion with my insurance company today, need a lot of effort and follow up in hope that they approve, and funny the insurance only accepts hospitals under its network! but thanks for information.

    Hejnet, get well soon, send you positive energy.

    Have a nice weekend everyone!

  • sondraf
    sondraf Member Posts: 1,631
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    Olma- is it lymphoma rash you meant (mycosis fungoides)? Yeah - mine looks nothing like that, just scaly and white patches and maybe a little itchy. But its almost completely gone now. When it appeared it was deep winter and I was doing long hours at work, so I assumed it was from rubbing against the arm rest or desk or dry environments or something.

    Julia - dealing with health systems is so frustrating isn't it. I swear its like the more I go to doctors the less faith I have in their judgement as its always such a rush. No wonder people spend time Dr Googling!