If you are not Stage IV but have questions, you may post here

Thanks Chrissy

Hello everyone, I have a kinda similar question like Loribach, I would like to know if anyone has a recurrence after treatment with neoadjuvant chemo, as part of their treatment? I heard many success stories but many also have surgeries as initial treatment. I wish I know better and tell the doctor in April 2016. The OC just give me chemo first as her plan saying she wants to save the breast. Realistically, I have a few calcification too so how can you do just lumpectomy?? So later they did mastectomy in Oct and found LVI. I blamed that on neoadjuvant chemo. If I had done a mastectomy to begin with, it wouldn't have a chance to spread. Now I'm afraid that recurrence is more likely. Does anyone have an experience with neoadjuvant chemo. Thank you.

Hello scar88, congratulations on your longevity, that really inspired me. I would like to know do you follow any diet plan, avoiding certain foods, like red meat, milk, sweets, or stay active exercise? Do you take any herbals, vitamins? Thanks so much.

Mom2fourplusmore... A couple of thoughts on your hip pain, which I suspect is from the Tamox. One thing you might do is ask your onc if you can take a little Tamox holiday to see if it improves. If it does, you'll know Tamox is the the cause. Or, you can ask for an MRI, which should give a pretty clear indication if it's med-induced arthritis or similar non-cancer issue. Assuming it is something like arthritis (or similar joint discomfort), sometimes the supplement curcumin can help. I use the one by Life Extension, and it makes a big difference in my joint pain. Deanna

Mom2four - I have bone mets in my ribs but have never had any pain. conversely, I've had such severe pain in my left hip that my MO ordered a bone scan and CT, with no mets findings. We suspect a pinched nerve or possibly arthritis (I don't take Tamoxifen or an AI so that's not the cause).

Pain isn't always a good indicator of mets. But if you have pain for > 2 weeks that isn't easily controlled by OTC pain meds, see your PCP it MO. AIs and Tamox can make already-challenged joints even more painful.

Good luck!

*edited to finish my post since my uncaffeinated fingers hit the Submit button too wuickly

Tpraiph, mets showing up in a knee is extremely doubtful, and sharp intermittent pain doesn't sound like bone mets pain either, which is much more often a deep, dull aching or burning pain. Have you had an MRI of your knee? It sounds like you have an injury or some sort of degeneration issue. And if it's lasted for 6 mos., it really needs to be checked out with an ortho doc. Please keep us posted on what you find out, but I would be shocked if it has anything to do with your bc.

As far as this thread... Yes, it is specifically for those who are not Stage IV but have a concern or fear about something going on and want to ask someone who has had a Stage IV dx and is living with metastatic disease for input. The space was created as a safe place to ask questions when someone is wondering if their pain or other concern could be mets -- rather than barging in on other Stage IV threads. I believe MinusTwo's comments about keeping the integrity of this thread were directed at a couple of earlier posts that were looking for more general information and support.

Well now dlb834 what you're describing is exactly what I'm feeling deep dull aching pain. My oncologist ignored me and now my knee surgeonisn't willing to do the mri he was going to do before my 2nd surgery.

Tpralph - I've been having hip, lower back, quad, behind knee cap, and tibial pain getting more intense in last few weeks that originally vaguely started with a fall last December on the opposing hip. I mentioned the hip and quad part to my MO (comes and goes, dull ache) and she didn't seemed concerned though offered an MRI (3 weeks ago). Now it has gotten worse, but still comes and goes and I feel it as you describe your knee pain. I may still avail myself of the MRI if it continues, but one of the things Dr. Google led me to was a form of sciatica, but with the femoral nerve. Sometimes the origin of pain is hard to pinpoint if a pinched nerve. Now a tumor can be a cause of pinched nerve, but many other things too (or so I've convinced myself).

I had DCIS, negative nodes, bilateral mastectomy, no radiation or chemo. I have stable lung nodules that were followed with CT scans for two years. A year and a half ago the chest CT noted the right 7th & 8th ribs as "healed fractures". My PCP ordered a Bone density test which showed osteoporosis. So we attributed these fractures to that. Fast forward 1 year, chest CT shows same fractures but states that they are non-healing. 3 months later I start having rib pain on right side. After several weeks, X-rays show 7th,8th & 9th ribs with subacute(Old) fractures that are healing. So I question my PCP about the possibility that this is not due to osteoporosis. She ordered a bone scan. The rib area lit up and the results state " probable healing rib fractures. Sclerotic metastasis within the differential diagnosis". So I'm awaiting a response from my onco to whom I sent a detailed message of what's been going on. My question is, has anyone with DCIS, negative nodes had mets to the bone?

Thanks for reading.

srmaryfreddo

MJH - Thanks for the reply! I had a nuclear bone scan yesterday and just awaiting results now. This shoulder is driving me batty!!

Goodness. I will say, I don't think doctors say that lightly. I'm glad the are sending you to a pulmonary doctor. that would be a good plan. Are you also having a pet scan?  Good luck and I hope things turn out okay. 

Hi TPralph,

I can't say how many of us there are but my mets were in the pleural lining. We found it when I developed a persistent cough and shortness of breath on exertion. I did have enlarged nodes in my chest and there may be a lesion but this is unclear. Also a couple of slightly suspicious areas on the bones in my hips.

Jmanningtx, I am sure there are many things that can cause a cough. As I mentioned above, the cough is really what led us to my diagnosis. I caught a bug last October and could not shake the cough. A chest X-ray showed fluid in my right lung and the CT scan showed a lot of fluid. They did a thoracentesis in late December and found BC cells in the fluid.

It doesn't sound like you have the fluid so I can't comment on your symptoms. My cough got progressively worse and, as the fluid built up, I was increasingly short of breath on exertion.

Hope this helps. PM me if you gave any questions.

My question too is about DCIS turning into Stage IV. I keep reading that it is impossible, yet I see people that it happens to all the time. How is it possible for DCIS to become Stage IV. I worry every time i have a back-ache that I have it. Thanks for your answers.

Annie, just to add to cive's answer... I think some women are told they have DCIS and that's what they focus on and remember. But if they were to go back and look at their original pathology, they will see that there was IDC mixed in with the DCIS. Not saying this is always the case, but it often is. Women remember the original DCIS dx, but because of being in shock or disbelief or because of poor communication from their BS or onc, they never fully understand that there were also some IDC cells found. Another possible explanation would be a lousy pathology job -- which is probably extremely rare, but can happen. In other words, the specimen isn't sliced or broken down sufficiently to detect tiny IDC cells somewhere in the lesion.

But as cive said, worrying about it is futile. Just do the things we know lowers risk like maintaining a normal weight and getting sufficient exercise, and try not to dwell on what are probably extremely rare cases.

Hi Bluepearl, of course! My spine collapsed at L5. That's when the docs found my bone mets. I was in the operating room five days later for a four-level spinal fusion to keep things in check.

It's been 4 1/2 years now. I'm still going strong. It sounds like your sister's hormonal therapy is still working -- you can expect her to be with you for many years to come.

Check in on the bone mets thread. You'll see lots of long-term ladies. Some of them had extensive mets when they were found.