De Novo Stage IV
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prairiesea, there is so much to live for. I try really hard every day to take it one day at a time.
I have taken the muscle relaxer for two nights. I only take it at night because I want to function during the day. I am not having the grogginess the next day as some do, thankfully. I want to report that I can still feel the muscle spasms happening, but the pain of them has gone from a 7 to a 3. I am so grateful that I listened and did what was suggested here. I hope the pain stays away for the time I’m away. It sure would make it much more enjoyable. I don’t know what I would do with the support I get on here. Thank you
Hugs to all.
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Question out of curiosity. My oldest brother, who some may know, was diagnosed with Stage IIB IDC a few months ago. He had a one-side mastectomy and is currently receiving five weeks of daily radiation. The one thing I didn’t expect is for two of us to have breast cancer, and I just lost a brother in January from a different cancer. My Mom and her dad both had heart disease. That’s what I expected.
Anyway, did any of you develop heart disease after or during radiation or chemo? My brother now has afib, along with the cancer. We also have a blood clotting disorder called Factor V. I, fortunately have not had blood clots, but he has twice. Afib can cause blood clots in your heart. I have not had radiation, so I wouldn’t know if this can happen. I’m sure anything is possible but would like to know if it happened to any of you.
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KBL, I am sorry I wish I have a better answer for you. Here is what I can tell, I had an echocardiography before I diagnosed stage iv, because I was about to start an iv chemo and the chemo drug (don’t remember its name) was harmful for heart, they wanted to get my heart tested before starting it. Now some times I feel heavy on my chest, it started when I had to do back to back mri with contrast every 6 weeks. The contrast causes my heart rate rising too.
My mri appointment canceled for second time, they didn’t even bother to call me, let me know... I hate this disease I hate more this hospital...
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Snow-drop, it’s okay. I’m sorry you’re having issues as well, and that’s not right for them to not notify you. I hope you made a complaint.
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KBL - some chemos are known to cause heart problems. In 2016 my oncologist wanted to change the 2 drug cocktail to 3, because she said it was a more aggressive treatment and she thought I was young enough (58 at the time) and strong enough to tolerate it. I asked about risks, SEs etc. She said the 3rd drug did cause heart problems for some people, but they monitor and stop the drug if it does. I said NO to the 3rd drug. Radiation...... had it onthe left side in 2009 and was worried about about the heart, but seem to be ok.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Stop Ibrance Arimidex 2/2021, start Exemestane and Afinitor. Oncologist wants me to see radiologist, thinking it could help with lymphedema in R-arm (getting reaaly bad) as well as the cancer.
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BlueGirl, thank you for the info. He’s got a scan set mid April. I’m hoping it was a blip. He’s on medication to keep it in check. It’s so hard when we are one a treatment that can cause other issues.
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Sorry to hear about your brothers cancer. To your question-I’m on Herceptin and we have to have echocardiograms at least twice yearly. It can cause heart failure but usually it is reversible after a break in treatment. I do know that left breast radiation is risky but do not know anyone who has had it. Maybe in the forums outside of Stage IV you could find something about this.
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Thank you, Olma! I appreciate it.
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I want to say thank you again for convincing me to call doc about my spasms in my rib area. I was able to get them stopped and enjoy my time away. My husband and I took my 20-month-old grandson for four days to the country and had a great time. My pain was in check. I was so tired last night, I was asleep by 6:45. Haha. You forget how much work toddlers are.
I hope everyone had a wonderful Easter.
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Please forgive my stopping in here on the de novo thread. I follow to keep up with friends here. I want to address a few comments to Prairie. Hi, Prairie, nice to meet you! I am going to sound opinionated, and please ask me for journal links if you want me to back up what I say, but for now I am just going to get these comments typed while your story is fresh in my mind. They will vouch for me here.
I think you really do need a breast cancer specialist, especially with stage iv. No oncologist can keep up with everything properly for every cancer type. This really matters.
The reason KBL was asking if you have lobular is because it can be difficult to detect on imaging (but not always!). You said the oncologist "had little answer for why Pet/CT Scan did not pick up the BC which he told e would surely show up there if I had it (he suggested perhaps the glucose didn't get there???)." He should know (again, you need a bc oncologist) that PET-CT is not a good imaging modality to detect breast tumors. Mammogram, ultrasound, and breast MRI are, and MRI is the most sensitive in many cases.
Please get copies of your pathology/biopsy reports, so you can see how ambiguous they are or are not. (Maybe the oncologist just does not understand them.) The reports should help you understand how it was determined to be breast cancer. There are various genomic aspects they can test. For example, I had a liver biopsy and they needed to determine if it was another bc met or if I could also have bile duct cancer. One way they could tell it was breast cancer was they identified the GATA gene. Also your report should confirm IDC vs. ILC. If e-cadherin is negative, that means ILC as lack of e-cadherin is its hallmark.
I think you should approach your second opinion from the opposite end. Instead of asking your current institution where they want to send you and to procure an appointment for you, YOU decide where you want to go and contact that institution directly. You call them and tell them you are looking for a second opinion and possibly to transfer your care, and ask them to help you begin the process. So now they are working with you to get you there. Follow up on everything, making sure faxes etc. are sent and received, and that nothing gets stuck sitting on someone's desk. Facilitate by passing along contact info between the parties and asking when things will be sent or received. Also get your own discs with all imaging and copies of all reports which you will hand-carry. More than once I or my relative has arrived for an appointment to find the promised reports or images had not been sent/received, and we whipped out our own copies for the grateful doctor. Northwestern is the NCCN center in your state.
https://www.nccn.org/Members/Profiles/Default.aspx?MemberId=12
Ok. Feel free to ask more or to PM me.
ShetlandPony
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Prairie, I see that they are considering the possibility of two types of cancer at once. In this case I believe it is even more important to go to an NCCN center where the experts can discuss your case with each other, and will be very interested and not just trying to get you to go away. (My onc says to me, "So we've been talking about you behind your back...") Please go to NCCN.org to read about these centers. Their physicians literally write the book on how to treat various cancers. They evaluate the evidence and establish the guidelines.
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KBL. I'm so glad the muscle relaxers helped and made it possible for you to have an enjoyable trip with your husband and grandson. That sounds wonderful.
Thanks so much for these ideas Shetland. I agree I should have been more proactive, but my cancer center basically arranges 2nd opinions with either Northwestern or Siteman in St. Louis, both NCCN centers. I have ended up going to Siteman and so far, with the one specialist I've seen, an orthopedic oncologist who was looking at my spine, have been satisfied that they are providing independent assessments. I think he put to rest any notions that my back problems could be surgically dealt with and emphasized that we needed a diagnosis. The next day my local onc called with the Stage IV BC diagnosis....but the other lurking things they had found over a long diagnostic process did concern me, and also concerned the RO I subsequently saw, who thought my lesions looked more myeloa-y. As it happens, according to one of the medical assistants at Siteman who called to set up a BC opinion, the BC specialist and myeloma specialist there have already been consulting each other over my reports and are in accord with the BC diagnosis. So that's confirming. In truth, the biopsy report indicating BC is more compelling than any other tests I've had, indicating multiple markers that indicate BC. (positive for GATA3, ER, Ck7, Negative for CK20....eventually a more complete report indicated PR negative). However, since non-myleoma grade multicolonal gammapothies e.g. MGUS can also cause bone fractures I want to be sure we are not overlooking anything, as after several tries I never got a satisfactory bone marrow bioposy to confirm or rule out MM. All to say, thanks, and do send any relevant articles, as I like to do research. But since I'm set up with an appointment at Siteman in 2 weeks I'm inclined to go ahead (even though I'd prefer to stay in Illinois). In the meantime I've had a heart to heart with the oncologist explaining that I've been going through these symptoms and having to demand closer looks for 15 months now (though he's only been involved for 3 months) so I'm just going to be pushy and vigilant (ok, maybe not pushy, which anyone who knows me will tell you I'm pathologically not; but vigilant). Anyway, I do have knowledge of other patients who use the same clinic here getting their treatment overseen by doctors at Siteman or Northwestern, and that going well. One of them told me to go over the treatment plan with the Siteman doctor in detail, making sure this was the best plan for me at this stage. Generally I think if there are problems or progressions their guidance is taken into consideration for next steps. I will do that, and also ask the questions you suggest about the biopsy and imaging.
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KBL. Also sorry to hear about your brother's cancer. I hope the complications get cleared up.
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Oh, I see that Siteman is an NCCN center in MO. To my mind, any NCCN center is a great place to go, and I am glad you have been able to proceed and that the specialists there are consulting each other about your case. I would not worry about their relationship with your local institution coloring what they say; they will do their own work and I would expect the local place to defer to them. It sounds like there is an established consulting relationship and I think that will make it smooth for you. Good for you explaining your approach to the oncologist. Involved and informed patients do better. You will be under the care of a breast cancer specialist from now on, won't you?
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Hi, Shetland. No forgiving needed. You pop in any time. What great information, and I’m always open to hearing great information. I know I learn something new every day.
Prairiesea, thank you.
About the bone marrow biopsy for MM, I had one as well that was negative for MM. it was at a top NCCN cancer center in my state. I’m really mad that they didn’t do a CT guided biopsy because last year I had a CT guided bone biopsy (different than bone marrow biopsy), and they identified that what they thought was MM was actually breast cancer the whole time, since 2013. The NCCN center missed my diagnosis. Once I was diagnosed, I did go back and have a second opinion there, and they did confirm my diagnosis. I wrote the doctor who did my biopsy a few times before I found out, and he did write back to me, but once I told him they missed my diagnosis, communication ended. A fellow performed my bone marrow biopsy.
I also had above normal tumor markers, and they dismissed them since all four they tested came back above normal. I’m mad they didn’t go further or tell me to keep looking since the MRIs all said metastatic cancer. I had three of them over a few years, and they were screaming something was wrong. The only way I found out it was cancer was when it spread to my stomach and I had symptoms. I could have kept that crap in my bones if they had caught it sooner.
Am I mad? Damn right. Do I let it eat me up? No. There is nothing I can do now. I want to enjoy what time I have left. I may feel differently as time goes on and the pain gets worse and I’m closer to death. I feel they’e robbed me of seeing my grandson grow up. I choose to enjoy every minute I can with him.
Funny thing, the twinge in my rib is back. The pain level is a 4, so not as bad as the 7 last week yet. Just took another muscle relaxer. I will definitely be talking to my doc next Monday. I have to figure out what that is.
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Question. How many here have ILC vs IDC? Anyone with ILC have no imaging work except for MRI? Whether IDC or ILC, how many have it in every inch of their spine, cervical, thoracic, and lumbar. I also have it in my pelvis. Have the meds you’ve been on been shown to put you at no evidence of disease with this? Is it possible to have no evidence of disease with this much in your bones? I know I will never be NED, as I’ve been on Ibrance and Letrozole since June of 2019 and it’s still everywhere, including four places in my stomach.
Sadly, I have no way to tell if I’m progressing. CTs don’t work, PET scans don’t work, bone scans don’t work. I feel so alone with not knowing how to tell whether we should switch meds. I don’t know what’s causing the horrible pains I’m having in my left rib and back. I had a T spine MRI today, but other than being loaded in the whole T spine, it can’t see my ribs. I asked the tech what would show the rib. She said PET. That doesn’t work.
Is there anyone else in this group who doesn’t know whether or not they are progressing? Why does my cancer have to be so freaking difficult?
My tumor markers have come down since diagnosis but are still high and now just teetering a few up and.a few down every month. One is 103, down from 220 in June of ‘19 and one is 330, down from 490 in June of ‘19. I asked for my 125 to be tested recently, and it was over 1400, and all they said was it probably has to do with your original diagnosis, so it’s fine.
Sorry for the the long post. I just want to know why it seems I’m the only one who has no way of knowing.
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KBL, I am so sorry that you are in this unbearably frustrating situation. I can only imagine how difficult the not knowing is - that it's like waiting for test results that never come in. I afraid I don't have any helpful information, I'm IDC and liver mets only, but I want you to know I care. I hope there's someone out there that can help you with answers. Wrapping you in a big cyberhug.
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SeeQ, thank you so much. I so appreciate that. Sometimes just a hug helps when I feel so alone. Hugs right back to you. I’m going to try to post on the ILC forum.
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KBL,
I am IDC and have bone mets at C7 (extending into C6 and T1), T5, T9, T10, T12 and L2 plus a single rib met. At this point, I only have the original scans from my diagnosis (no report from latest scans yet) so I can’t really provide any helpful information. The bone scan, CT, and MRI that I originally had all supported each other’s findings.
The tumour marker test they use for me is CA15-3 which is currently at 152 (down from 1445).
I’m very sorry that your mets are elusive and don’t show well on scans. I can’t even imagine how frustrating and upsetting that must be for you.
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ilowen, thank you. Your scans seem very different in that they say where your mets are. Mine don’t say what part, they just say diffuse. I guess it is impossible to say it’s in this or that bone for me. I’m so glad your tumor markers have come down so much. That is so awesome. Can you tell me which scan showed your rib met. Thank you for sharing.
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KBL,
Both the bone scan and the CT picked up a met on my lateral right 9th rib. The MRI was done for surgical prep and only looked at my spine.
Looking closer at the reports, I notice that I was a bit mistaken in my previous post. Neither the bone scan nor the CT actually picked up the mets at my T5 and T12, which were the smallest mets according to the MRI. The MRI seemed to be more accurate and detailed than the CT or bone scan.
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Thank you for letting me know. I think I just have to get myself to recognize that my cancer is not the norm and isn’t seen in these modalities. I’m grateful that they do see the cancer in my spine.
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KBL, my largest breast tumor was ILC. My single bone met showed up on CT and MRI that I had done for other reasons. I didn’t have a bone scan before radiation to T11 so I don’t know whether the met would have showed up on the bone scan or not.
Thinking of you and hoping you get some relief
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Thank you, Cyathea.
I reported over in the bone met thread but wanted to report here as well. I went to the emergency room yesterday for the pain and dizziness. They did a CT scan looking for blood clots because I have a blood clotting disorder. There were no blood clots, but I have bilateral hydronephrosis of my kidneys with unknown etiology, so I have to go see a urologist this week. I fear it has spread to my retroperitoneum. If so, I will be switching meds. I just hope I can get the pain under control in my left kidney.
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Called to make appointment with my gastroenterologist because it's almost been a year since last endoscopy, and my appetite is decreasing a little and I've lost a little weight, which is how it all started. I didn't get an appointment until June 4. I just accepted that, but I wrote him an email letting him know who I was and just wasn't sure if he could see me sooner or set another endoscopy. His office called this morning and had a cancellation Friday, so I go for my fourth endoscopy to see how things are doing in my stomach. Coincidentally, this endoscopy is set for April 23, 2021. My very first one where it showed up to be cancer was April 23, 2019. Two years to the day. I'm hoping it's not much worse, but if it is, I'm going to talk about switching meds.
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KBL, I'm so sorry you are having new symptoms. So glad you got your appointment bumped up. It will be a relief, I know, to get answers. I agree that if it is a new site of growth, a change of treatment is in order. Keeping you in my thoughts, and I hope your worries and your symptoms resolve soon.
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KBL, all the very best with endoscopy and good results. Please do not let your thoughts going elsewhere, you’ve been in pain and taking pain killers for several months that might affect appetite. (((Hugs))).
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Thank you, NineTwelve. I’ll keep you posted. It’s not a new site, as my stomach was the second site after my entire spine but the first one diagnosed.
Hi, Snow-drop. You might have me confused with someone else. I haven’t taken any pain killers during my treatment. I took a few days of muscle relaxers a few times but that was it. I actually hate anything like that, so I’ve avoided it. I usually just take Tylenol or naproxen very sparingly. This will be my fourth endoscopy. Last year when he did it, he said there were nodules that weren’t there the year prior. If it looks worse, I’m definitely going to change meds. I’ve been on my first line for almost two years, started Ibrance and Letrozole in June of 2019.
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KBL, my apologies I thought you were taking pain killers when I asked about it earlier. Wish you the best for upcoming endoscopy (((hugs)))
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KBL, Way to advocate for yourself (with a little luck thrown in) for an earlier appt. In your pocket on Friday, hoping for stable findings. Two years is the average for Ibrance, right? I know I've seen at least a few people on Ibrance for four years. Let's hope it's still working for you.
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