De Novo Stage IV
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Tinkerbell, agreed. This type of surgery is what I consider last resort too. Gamma knife is easy though, just FYI 🙂
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Diagnosed MBC De Novo Jun 2015. I was 43. The only notable symptom was breast pain. My dr. sent me for mammogram which found two lumps in my left breast. After neddle biopsy confirmed, I was sent for CT and Bone Scans - cancer was found in pelvis, skull, ribs, scapula and spine - biopsy to my pelvis confirmed bc. After a year and half of hormone therapy with zometa under my belt, it spread to my liver. At that point, I stepped out of my high stress work environment and took LTD. Also, got my affairs in order for my 2 children - cause it finally hit me that this was a serious mess. So the last 4 years, I've been 100% focused on my children - while systematical working my way through 10 lines of treatment - numerous test and biopsies to see if the newer drugs would work, no such luck. Now there are no more standard treatments - none. But I still keep going, having radiation to a tumor tomorrow to hopeful spur my immune system and maybe create the rare abscopal effect, while waiting for a sponsor on 3 different phase 1 clinical trials that I'm eligible.
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Hello bewitching_bell - glad you found our little corner of BCO! Definitely check out the clinical trials thread - Cure-ious may have some input or a different perspective, and there are quite a few Ladies of the Liver in there who have been scanning trials recently who could have some thoughts as well.
Quick question for those who have not had surgery - does anyone have pain from armpit nodes? I am just getting over this sinus infection and its been bothering me on and off since the infection (and antibiotics) started a week and a half ago. I thought it was my bra wire rubbing on it, as Frankenboob has shrunk the last few months, but its been at night before bed too. Like a warm pain, if that makes any sense, not burning or stabbing, just letting me know its there. This armpit lump was biopsied at diagnosis, but the first attempt was inconclusive and while waiting for the results of the second biopsy the scans confirming mets came back, so I never found out the results (but I mean, cmon, what else could they be).
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Thanks Illmae re GK.
See Q: SInce I'm literally only a few hours new with my dx, didn't realize that acoustic neuroma is the same as vestibular schwannoma. So I don't clog up this thread, I'll PM you after my 2/25 consults. I appreciate you would be willing to reach out to your sister..
BeWitching bell: I want to say welcome, but it's not the word that fits this situation. So I'm glad you found us, for who really wants to be here with MBC.
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Has anyone had it spread to the skin? Have been on Ibrance/Arimidex for 17 months for BC in R-axilla, that made itself known when right arm swelled up. This is the 3rd BC, oncologist thinks each is new vs recurrence. First 2 on left, 3rd on right. A rash just showed up on right side of chest. Was experiencing a loss in range of motion on the right and fibrosis, which I thought was a shoulder injury from 40 years ago, getting older, not going to gym. Punch biopsy showed BC in skin where the rash was. Oncologist is concerned that regular CTs missed something and is trying to get a PET scheduled. She's thinking that the Ibrance is not working. Mentioned chemo, but wants to see what PET finds. Getting discouraged that nothing really works, that it is the same cancer.
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 caused immediate joint issues, quit. After several months started tamoxifen.
2019 - ER+ R-axilla, presented itself with a right swollen arm. Ibrance/Arimidex. Initially CTs suggested it might be shrinking. A couple of months ago I was noticing a decreased range of motion in the right arm and fibrosis neck/shoulder area, attributed it to an old injury and just getting older. A rash started maybe over a month ago, turns out to be BC in skin.
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Bluegirl,
I have no personal experience with skin mets but I recall seeing mention of it on bco. Have you tried the search function? Wishing you the best!
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Bewitching, I’m so sorry about what you’re going through and so young. I hope the radiation helps and that you can find the right clinical trial. I’m thinking of you. Virtual hugs.
BlueGirl, I don’t have any experience with BC to skin.
Sondra, I also don’t have any advice on armpit pain. Sorry.
Can I ask those with bone metastasis at de novo diagnosis what scanning found your metastasis. Was it a CT or MRI, PET or bone scan? The only thing that showed it in my bones was an MRI. CT does not see it.
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KBL, I had the CT and Bone scan the same day, I think it was noted on both. Only had the single bone met, so no PET was done, I’ve still never had one. The scans were done just before meeting my team and while the bone biopsy wasn’t scheduled and didn’t confirm until the following week, I was told they believed I was stage IV from the get go and would treat me as such but with curative intent.
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Thank you, Mae. I’m more asking for my brother. He just had a mastectomy on his left side. The tumor was 6.3 cm. They did a CT scan and didn’t find it had spread. He has IDC. I have ILC. I guess since they missed mine, I worry about him. I do notice that a lot of Stage IIB people eventually get to Stage IV. His isn’t de novo, so sorry for changing the subject for a minute. I am concerned for him since I was de novo.
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mine were found on a PET scan, a PET/CT to be precise
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My bone met was found on an unrelated PET, i.e. not related to bc. My HMO, Kaiser Permanente, has only used PET scans on me, for the most part.
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bewitching-well, I am sorry you found yourself here, there is an active thread “liver” and supportive ladies who might help you out with different trials or new lines of treatments, BevJen just started a new medication, Nicolerod and Alabamadee are very active to find clinical trials. Hope that helps.
Sondra, I do have armpit pain sometimes, now I feel that pain in my right side as well, being optimistic that right side maintains healthy, I think that pain is not cancer related. Actually one of the reasons that BS and MO didn’t pursue surgery was that cancer already spread into my lymph system so surgery will not bring any benefit for me.
Tinkerbell, happy for you that it is benign, maybe treatment for cure would distract you from MBC? Just a thought.
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javajana,
My met was an incidental discovery too. I had had a bmx six weeks before and staged as IIB. I was trying to get into a clinical trial and through screening for the trial, my met was found. I wonder how many years I would have gone before it was discovered due to symptoms
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KBL, I am sorry about your brother, it is too much to take (((hugs)))
ref to your question: Scans are able to show tumors bigger that 7 mm, bone scan is suggested to have a close look at all skeleton from skull to toe and joints while pet scan usually suggested to monitor tumors in organs. But MRI is able to catch tumors 3 mm size and suggested only when your MO is certain that there is/are tumor(s) so the MRI images show accurate size and locations of tumors, it is a good way to study potential progression especially if a tumor is in sensitive area.
I totally agree with you that many stage IIB eventually get to stage IV because of miss diagnosis.
mine:very first ct scans showed one vertebrae met, which was 1.8 x 2 cm quite big, bone scan confirmed it, MRI showed more spinal Mets!0 -
Tinkerbell, I hope the appt with the ENT goes well and yours is one that doesn't warrant any action. I just mentioned acoustic neuroma, because I wasn't sure all vestibular schwannomas were the same and I didn't want to confuse the situation (big fail! sorry!). Anyway, I think my sis would be happy to provide any info/insight about her situation if it's relevant.
SondraF - I had to laugh at the "Ladies of the Liver". That's me (newbie), and I had not heard that yet. Have you had your shingles vaccine? Probably your recent virus just has your lymph notes working hard, but part of your description sounds like my friend who had shingles last fall. She had swelling swelling and warmth (sort of an odd sensation) under her arm, then eventually pain before the rash developed. Not fun, but not cancer. She's why I made a point of getting my shingles vaccine last year.
Bewitching bell - love the screen name. I'm glad you found us. I'm no wealth of information, but I wish you the best of luck moving forward with trials.
Bluegirl - it's so frustrating that the doctors don't just know what to do to fix us. I know I just saw skin mets in a profile lately - maybe in Mel's Living Room? Could be the liver mets thread, but I don't think so. It caught my attention because of another worry I have...trying not to be the hypochondriac. I'll try to figure out who it was.
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Hi to all. Just checking in. I realized I haven't been here for quite awhile; lots of reading! Getting ready to sell our house after 30 yrs in high altitude mountains. Tired of the snow and cold and the altitude is taking its toll. Some other things going on, too, I won't go into, but thanks Snow-drop for the shout out a couple pages back and for thinking of me! Hoping for good scans and news for you all with hugs all around.
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Thank you all. As you know, even though they kept yelling there were things seen on MRI suspicious for cancer, they went the wrong direction with mine, so it was missed for six years. I don’t want that for him.
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Bliss, good to hear from you, I am glad you are doing well, good luck with selling your house, I can imagine it would be difficult to pack 30 years stuff.
A question for all, have you done ct scans with oral and IV contrast both??any suggestions/ tips are welcome. The oral drink is barium? It is first time I heard both oral and iv at the same time...new MO new order new attitude... I have to sit and drink god knows what for 2 hours in the middle of red zone, this hospital is the only one in the region that admits Covid patients I hate everything about this cancer center...
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I do both every time. They have me take the chalky stuff at my cancer center. I do it at home, though. One bottle two hours before and one bottle one hour before. I tried the mocha. If you like chocolate, I would say do the berry. Much better. At another center, I had a thin drink I had to take. I had to drink it there. I much prefer the barium. Sorry you have to sit there and do it.
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I have never taken the oral kind.
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My CT includes oral contrast but not the barium kind. I have it mixed with OJ and don’t taste anything bad. CT includes IV contract as well.
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I have both oral and IV. I like the vanilla flavored barium. I drink it there but it has never been busy when I’m there. I find it easy to drink
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thank you ladies for tips, sorry my post sounded like venting. I managed to change my appointment a bit, explained my concerns about virus and 2 hours sitting in a small waiting room (radiology is in hospital, same entrance with er), plus my back situation won’t allow me to sit more than 30 minutes tops. They agreed that I can collect the contrast drink a day prior to my appointment, so I am able to prepare at home instead. Other thing they mentioned was the iodine drink should not be mixed with anything and it is plain. I was thinking how someone can help by simply willing to listen to! Yesterday they just made me nervous by NO-ing to everything. Problem was the same as yesterday but approaches were totally different!
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Snow-drop, so glad they’ll let you do it at home. Vent any time. We all need to do that once in a while. So yours is not the barium, yours is the iodine. I did that one when I went to a different place than normal. I’m glad you spoke up and let them know your concerns. Please let us know how it goes and when you get your results.
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sweet, thank you so much KBL ❤️
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You’re so welcome.
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KBL
I had one met on a rib when I was diagnosed. It was spotted on the CT scan and lit up on the PET scan. Then biopsied. It shows up on the Ct scans everytime I have one. I'm not sure why we do bone scans. I just recently had my first MRI and it found several more mets on my spine. Both cervical and thoratic. So maybe 5 or 6 mets on my spine and a few in my pelvic area. Scans are very frustrating to me as they don't seem consistent.
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Twyse, yes, scans are very frustrating. I have extensive mets from the top of my spine all the way down into my femurs, and they don’t show up on any scan other than an MRI. I don’t do bone scans. I had a few of those in 2013 and 2016. They showed nothing either. I think it may be because I have a lot of tumors, but they’re all under 1cm. I’m sorry scans are frustrating for you too.
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Is everyone aware that they should get the Covid vaccine in the arm from which they did not have lymph nodes removed?
I have bi-lateral lymphedema, but it is controlled. But I hope that my PCP or chemo center can give me the vaccine in my thigh.
Both the Pfizer and Moderna vaccines are causing the axillary nodes to become sore and swollen even in the ladies without BC.
So there is a much greater risk to us BC survivors to develop lymphedema.
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good to know, Denny, thanks for the heads up on thi
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