If you are not Stage IV but have questions, you may post here
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jenjenl, I think CT scans do work much better for those with IDC. I have lobular, and CT doesn't pick up any of the cancer I have. I hope your pain is better. That’s great that nothing was found. It’s always perplexing when we have pain and don’t know why.
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The pain is not better and I'm taking Tylenol regularly now. The bone scan is on Tues so I should know more on Wednesday. I don't have a good feeling. Sadly, to me the probability is more its mets than other back problems normal people have. We leave for Hawaii in 2 weeks for 2 weeks.
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bone scan came back clear. I went to a spine specialist this week and he indicated there is something going on with my back and/or nerves. When he did a series of reflex tests, my body did not react. I'll have an MRI when I get back from Hawaii. Back pain is so painful.
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Jenjen, I’m sorry you’re in pain. When we don’t have the answer as to why, it’s just so frustrating. I hope you can enjoy Hawaii
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Is there anyone here who started out with hormone receptor positive, stage 1, lymph node negative breast cancer and went on to develop stage 4?
I feel like this has been asked somewhere on the boards before but I couldn't find any previous posts about this.
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orangeflower, you describe me. In 2008 I had ER+ small IDC, some DCIS and 0/2 lymph node involvement.
MBC diagnosed from malignant plural effusion. Tumors in lungs seem to be gone, but some damage remains. Liver tumors still active. So the answer to your question is yes, MBC can appear years later with no warning. Sorry to say
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Bone Mets question!
My ALP and AST have always been outside of normal but this was attributed to statin use and wasn’t a concern to any of my doctors. My ALT level has always been normal which is kinda weird.
Recent bloodwork shows both rising.
ALP: 6/23 123; 9/26 154. (Previous high was 144 in 2019.) Upper limit of normal 117 per my report.
AST: 6/23 68; 9/26 76. (Previous high was 55 in 2019.) Upper limit of normal 37 per my report.
I don’t drink and never have, nor do I have a fatty liver. I’m not doing chemo or on an AI. Calcium is normal. No aches or pains, no fatigue or feeling sick. I had a normal cancer antigen test also in June.
So my question is when you were diagnosed w bone mets, how high was your ALP when it was diagnosed and how quickly did it rise?
The AST doesn’t seem to be linked to bone metastasis so I’m not sure what’s going on there. But since the ALT is most specific to liver problems and it’s normal it doesn’t sound like it’s the liver.
I would appreciate any and all feedback - and thanks in advance!
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Lita, I was diagnosed with bone mets 2 weeks ago, all blood test and markers are normal except for Calcium which is 10.4 for the past 2 years. My symptoms has been deep dull pain that comes and go that started6 months ago.
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anx789,
I'm so sorry to know your BC progressed. I was diagnosed in 2017 with a similar stage as yours. I appreciate you sharing your story
How are you doing, mentally and all that?
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lita, Im doing ok, thank you for asking. Since I’m not in pain, I’m not stressed out yet.
Take it easy, don’t pay too much attention on blood works, unless you have other symptoms.
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I’m covered from skull to femurs in bone and bone marrow metastasis, and both ALP and AST are normal.
I’m sorry I can’t help with why your numbers are out of normal range. This disease likes to keep us guessing.
Hugs
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Thanks so much for responding - and I think you’re right - it does love to keep us guessing
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anx - I'm glad you're doing okay and not in pain.
Normally I do okay mentally but that’s because nothing has really come up until now..
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I was diagnosed in early 2015 wth grade 3 mixed ductal/lobular, LVI but low Oncotype. Did 5 years Femara..
I have been having pain in my left hip that awakens me. It does not hurt when walking, only from pressure while lying on it. I have had this for about a month. It doesn't seem to be in the actual joint.
I asked my oncologist how to be proactive with this and she said to contact my PCP. I had a double mastectomy and my doc doesn't do blood tests. How would I catch a metastasis?
I do have some arthritis, as well as several spinal fractures, so pain is not unusual for me, though this hip pain is. Is an x-ray sufficient to start? I am going to call PCP next week. I am not overly anxious, just trying to stay on top of this. Thanks!
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windingshores, I would definitely start with an X-ray. If they don’t see anything, ask for more tests. There has to be a reason. I would also ask for bloodwork to make sure your numbers are in check. Please come back and let us know what you find out.
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@kbl I posted a reply but don't see it!
Thank you for the advice!
An x-ray will show arthritis- past x-rays did. But this pain is different and in a different place. I anticipate needing to push a little to reach an answer I trust.
I don't look for things to worry about but try to be prudent when something like this pain comes up. How else would I ever catch a problem?
My oncologist does not do blood tests. In fact, after 8 years, my oncologist doesn't see me at all. I sought an appointment for a check in a few months back and they told me no need.
I had a Breast Cancer Index and Prosigna Assay at the 5 year mark. High risk of recurrence in years 5-10 but Oncotype was low, despite grade 3 and LVI. Mixed ductal and lobular.
Good luck again with your own treatment.
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Here is what I posted. I hope you can see it this time.
windingshores, I would definitely start with an X-ray. If they don't see anything, ask for more tests. There has to be a reason. I would also ask for bloodwork to make sure your numbers are in check. Please come back and let us know what you find out.
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On October 30th, it will be 10 years since I was diagnosed stage 2 BRCA1+ 🥳. Did it all - DMX, hysterectomy, DIEP, TAC × 6 chemo, radiation. My kids were 2 and 5, and are now in middle and high school. My hubs and I are going to Asheville, NC for a long weekend to celebrate.
There have been many scares over the last 10 years. In April, I had a bone scan, CT scan and MRI, which were all clear.
I am currently experiencing a scare right now.
1) very soft movable lump under collarbone - checked by onc and PCP, not concerned, however, we'll be checking by ultrasound Oct 31. My Dad has lymphoma so not taking chances.
2) top of right hip pain and tender to touch started 8 days ago. Chiro did xray and didn't see anything. It hurts when taking a stride on right side when my foot hits the ground. The next day didn't hurt and today it hurts again. This concerns me bc it does not feel right and nothing I've ever felt before. I pray for arthritis 🙂 Bone scan Nov 2nd scheduled.
I appreciate how responsive my medical team is. Reaching out to this tribe for feedback on the hip pain and probability the xray is accurate. Scared but hopeful ❣
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Lita - would your doc consider running a GGT blood test? It could give an indication if there's something going on in your liver. Or maybe it would give you more peace of mind.
After tracking LFTs that were up and down for a year, that was the last blood test my PCP ordered before sending me for an abdominal U/S, which led to MRI, then biopsy for my de novo dx.
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windingshores - is there any chance it's sciatic or piriformis pain? I only mention it because my (non-cancer) friend would describe it as a burning hip pain that would interfere with her sleep.
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i don't think so. My mind is getting the worse of me. It's the night before my 10 yr since first dx. Celebrating with my hubs and crying on the side. I'm kicking myself for not checking into the pain again this summer. I just was so happy all the thats didn't say cancer that I accepted thr pain was just normal pain now. I'm very concerned.
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The results from the ultrasound of node in neck are below, haven'theard from MO yet. I have a bone scan tomorrow for this chronic back pain. I am so scared.
"There is a 10 x 3 mm oval hypoechoic mass within the left supraclavicular region corresponding to the patient's palpable complaint. Appearance suggests probable reactive node, less likely lipoma. Clinical follow-up recommended-if there is any enlargement clinically or associated pain short-term follow-up CT neck with IV contrast would be useful for additional evaluation initially."
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My Onco just started doing a test this year for Lactate Hydrogenase or LDH along with my other markers. Received results today and all markers are low except the LDH doubled in the last six months. All low number in January and April, but hit almost 400 this month. I also started having unexplained seizures in September. I don't see the Onco until the 14th and would just like some feedback from you wonderful ladies.
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MY hip pain continues. Last week I shepherded my 95 year old mother to hospice where she died, so I got more than a little sidetracked. My pain is in a particular spot near the SI joint, but radiates more each day. I saw PCP NP yesterday and x-rays of both hips and of SI joint only show mild degenerative changes." So not arthritis after all.
@seeq I have had sciatica and considered that (and compression by piriformis muscle could be a factor). Doesn't seem like sciatica but you never know. I was also considering bursitis-? Not jumping to cancer spread as a cause just yet but trying to be prudent.
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This is my third time being diagnosed with breast cancer. It did not make me an expert!
I am wondering who diagnosed metastasis in those with stage 4, their PCP, Breast Surgeon, or Medical Oncologist? I am feeling symptoms but not sure which doctor is best to discuss it with? The next one I am scheduled to see?
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I'd pick the next one you see! My MBC came to light after having breathing issues. PCP's asst noticed left lung was different from right & ordered some cough meds (Perls) which did nothing. Week later I couldn't breath and had to go to ER. When they tested the fluid from draining my lung, they found BC.So symptoms alone would never have led me to guess MBC.
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I would see an Onco, baesd on my experiencePCP cannot order pet scan or biopsy, they are limited to xray and ultrasound, ct or pet scan must be ordered by a specialiist
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Thanks for the responses! They were very helpful
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One more question I have yet to be able to find an answer to. I had IDC in 2003, a failed sentinel node biopsy, so the surgeon removed the axillary nodes (24 all negative).
Almost 16 years later, I was diagnosed with ILC in the same breast, grade 2, treated with mastectomy. Is it even possible for the ILC to have metastasized anywhere since there were no axillary nodes on that side to begin with?
I assume that since this is now on page three, I won't get any responses.
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mavericksmom, ILC can be very sneaky. They never even found it in my breasts before it spread to all my bones, bone marrow, and stomach. It may be possible it’s in your other breast and not seen, I would imagine. What symptoms are you having that would make you think it may have spread, if you don’t mind me asking.
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