If you are not Stage IV but have questions, you may post here
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thankyou bluegirlred.
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so post, GP (internist) visit for CT results.
Chest all clear.
Detected in liver a small spot.
Dr just rang and said they'd like me to get an ultrasound so they can see more clearly
But it is very small aparently. Not there 4 years ago. (Last CT).
Likely a cyst? I'm not too worried.
Bone scan in 3 weeks.
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Liver cysts are common.
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yeah. Thanks shetland pony!
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Any thoughts on CA27-29 tumor markers? It seems like some DRs use regularly, others do not find them helpful. Oncologist called, concerned that mine went up since Aug, but wants me to continue with Ibrance 100 mg and Arimidex pending next CT which is scheduled 1st week Jan 2021. Started Ibrance Sept 2019. At first it seemed like it was working, after each CT oncologist was very encouraging because tumor was shrinking, but last time her comments seemed murky. That overall, improvement was indicated, even though measurement suggest growth. She said that radiologist might measure different area etc. CA27-29 25.6 Sept 2019; 43.1 Aug 2020; 50.4 Dec 2020. "High" is anyting greater than 38.6. Is this a big increase? Some have posted about MRIs, Ultrasounds, Petscans etc to help with detection and interpretation. Would these help? What kinds if questions should I be asking? Metastatsis has not been mentioned, but I worry about it and if CT would detect it early?
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BlueGirl, my CA 27-27 has always been within normal limits - even with mets. My first oncologist (now retired) did not put much weight on the numbers. My new oncologist feels the same. Some do, some don't.
Hopefully your next scans will give you some answers.
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sunshine I Iove what you wrote for your 'tag' it won't enter your soul.
Redgirlblue Are you able to post your cancer history?
I hope all is ok there.
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Thanks, Astrid. I had seen different 'tag' lines and I like how they tell us a little bit about the person. My husband and I have a strong (most of the time) faith and there is a song we really like by a group called Bethel. It's called "It is Well". I'm determined that "all shall be well with my soul", no matter the outcome of this vile disease.
You've certainly had more than your share of recurrences! I was part of the TailoRx study and was randomized to get chemo. My Oncotype score was somewhere around 18, I think. I was glad to get the chemo because I wanted to throw everything at this beast. Research now shows that chemo doesn't necessarily benefit those with my range of scores. So, I got the chemo and still had the mets. I think I'd be more upset if I HADN'T had the chemo and got the mets. It's not our fault that we have a recurrence or mets, but at least we don't have to second guess our treatment choices.
I hope you have a peaceful Christmas, if you celebrate it. Here's to an uneventful 2021!
Carol
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and to you Carol and all of us.
Peace be with everyone.
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update:
Hd liver u/sound this morning to check tiny lesion (2mm) guy was nuce enough to say it looks fluid filled.
Very happy about that.
Looking good. 99% for another cancer free year.
Bone Scan next week.
Starting a G:LAD program for the osteoarthritis in hips.
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Astrid....great news! Whoot!!! Thanks for sharing...when one of us dodges a bullet its like we all get to feel that happy dance sigh of relief too.
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Hey 7of9...
I know right?
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Just want to acknowledge the passing of chrissyb, the creator of this thread. I never met her, but I felt like I knew her. She was so helpful to me and hundreds of others. I felt like I had a friend on the other side of the world. She was a lovely, generous woman who contributed greatly to BCO. Fly free chrissyb. You are missed.
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So ๐ rip chrissy
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hi ladies.
Freaking out. My mom is almost 2 years out from diagnosis and the other day she found what looks like a bug bite on her breast tissue
No lump and not hard but I'm still freaking out to the point where i can't eat or sleep. She just saw her breast surgeon for a clinical breast exam that she gets done every 4 months.
I'm making an appt for her to see her breast surgeon but i can't stop thinking it might be stage iv
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farmerlucy...so sad about chrissyb. Thank-you for letting us know. She was a real treasure on these boards.
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ucfknights, I am sorry no one is responding and I guess it may be good news since no one had a similar case. I do have a bruise where the cancer was found but that's it. Maybe it is a bug bite.
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knights I am with lily here, try not to stress, it could be just a bite. So hard not to freak out. Every thing makes you worry itโs cancer. You have done the right thing by booking to see the doctor. Good luck x
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Had my bone scan today.
I feel really fortunate to have amazing free care available at a very beautiful cancer hospital here in Melbourne. It was a bit weird as I also work in pastoral care here. My role was as a patient today๐ I think I did good job.
Anyway the nurse came out from room and said my hips look inflamed so they did extra close up scans and then a ct scan of the area as well. I didn't know the bone scan machine could do that!
I felt like they took great care not ro miss anything and give me a super accurate dx.
I don't feel in my gut that this is anything but
Non cancer stuff.
Still will be great when report is in.
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ucfknights
Is there a reason that your mother can't handle medical decisions on her own and needs you to make her appointments? Are you her full-time caregiver? Some of us are uncomfortable discussing a third party without knowing if they have turned over their decisions to the person posting.
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Astrid, how nice that they were so thorough with your scan. I had one at the beginning of my Stage IV diagnosis where I had an X-ray of my hips/femur and then had gone upstairs to see my MO. While I was checking out, they called my mobile phone to say they wanted me back downstairs for some more views. It was kind of funny to be sitting in Scripps Clinic and get a call on my phone from Scripps Clinic. It was nice to walk right back downstairs and not be halfway home or all of the way home and get the "come back right now" call.
Will look forward to your update.
Carol
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Hi Everyone,
I have been a lurker in these threads for quite some time but have never posted. I have been so grateful for all of the wisdom and kindness that has been spread through this site.
I was diagnosed in 2019 and had a bilateral mastectomy. It was a bit of a whirlwind. They ended up finding multiple tumors with the largest one being an incidental finding (2.4cm). In total 3 tumors, all about 2 cm each plus macro-metastases. in the nodes. My mamaprint was low so no Chemo but radiation.
Recently I have been having severe bone pain in my hips. A deep pain that wakes me up at night for the past two months. It doesn't bother me terribly during the day but oy the night is bad. My oncologist ordered a CT scan. The results came back on Monday that I have 5 sclerotic foci lesions in my pelvis and lower spine. The exact language was "sclerotic foci with the spine and pelvic bones, concerning for metastatic disease" My oncologist just ordered a PET for today. I am quite nervous about what these results might mean. She reviewed a PET that was done just after my mastectomy by my prior doctor. That doctor did not mention these to me. It appears that the change in size is not significant between the two scans. A CT many years before (2009) for unrelated issues showed a completely clear pelvis and spine. The radiologist mentioned that it is not impossible to have same image showing no change but that the pain could be indicating that it is now active.
I am of course nervous for what this might mean. I would love to hear from others who have many be been on a similar path.
Many thanks!
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hi happy2beme,
Of course you are worried.
A very anxious time for you!
I admit I was surprised...no chemo even with 5 pos nodes? I don't understand this oncotype/mamma print stuff.
They didn't have it when I was 1st dx'd 2002.
Then it seems they also knew of some lesions from your 1st pet and still only rads?
I mean why wouldn't they hit it with everything in the 1st instance?
Can anyone explain this? I fee it is reckless.
If you have spread to the nodes, do chemo...surely? I am going to ask my onco about this and her opinion when I see her. I think it is outrageous and wrong.
I looked up sclerotic which means rigid.
Anyway.here you are now HTBM, and we are here waiting with you. I am sending love and best wishes for you.
Astrid.๐๐
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Thankyou dear Carol for your beautiful response. It means a lot to me.
Will post when I know.
Astrid.
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Hi Ladies, I have couple of questions:
1. Does x-ray show metastasis that is spread to the bone?
2. Once someone has BMX, how can cancer come back to the breast as recurance? There is no breast, what are the signs?
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Hi Lilly,
1) xray *can* show mets to the bone but some mets may not show up so it's generally not used if mets are suspected (nuclear bone scan would be more likely). However when I had hip joint pain the first test ordered was an xray.
2) So two things: one is that usually not all tissue is taken. Surgeons try but might miss a tiny bit. Skin sparing mastectomies & nipple sparing obviously leave tissue behind but even in a surgery where the surgeon tries to take everything, small bits might be missed. It's hard to tell sometimes where breast tissue ends. Secondly, breast cancer recurrence can occur anywhere in the body, not just in the breast, because cancer cells are small and can spread through blood & lymph. Both of these fluids flow all around the body constantly. There are numerous theories on the bio mechanisms of recurrence but one prominent theory is that at time of diagnosis, some cells have already escaped but they're too small to detect. They might float around the body until they connect with some tissue where they can grow and invade and eventually become large enough to be detected.
eta: there was a recent thread about what a localized recurrence post mx might look like https://community.breastcancer.org/forum/105/topic...
for signs of metastatic spread; BCO article includes signs & symptoms https://www.breastcancer.org/symptoms/types/recur_...
These info sheets explain it very well (from UK ABCDiagnosis) for IDC https://www.abcdiagnosis.co.uk/wp-content/uploads/...
& for ILC https://www.abcdiagnosis.co.uk/wp-content/uploads/...
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happy2beme, sorry you're having this scare. Let us know what your oncologist says when the PET results are in. Hang in there. Hoping for a benign diagnosis for you. Imaging of mets is a complicated issue. We hardly ever use PET here and my MO ordered nuclear bone scans to rule out bone mets when I was first dx with metastatic disease...but oncologists have their own preferences. I hope your scans provide some clarity soon!
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Moth, thank you so much. My question regarding local recurrence to the breast was unclear for me. I actually asked BS before she performed BMX in 2019 and she said that she will remove the breast as an organ. That made me think that no tissue was left behind but you are right about skin and nipple.
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LillyisHere, I can say from personal experience that a local recurrence after a mastectomy can present in a few different ways. The cancer can come back in the skin, on the chest wall, or in the lymph nodes around the area where the breast used to be. I had all three of those things happen.
Also, as Moth correctly pointed out, during a mastectomy some breast tissue is left behind. It is not possible for the surgeon to remove every last cell of breast tissue, even in non-nipple or skin sparing mastectomy procedures. Think of it more as a spectrum: a lumpectomy leaves most the breast tissue, a mastectomy takes most the breast tissue.
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