If you are not Stage IV but have questions, you may post here
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CandM, I think you should join the liver & bone mets threads as your mom is definitely StageIV now. Your mom might need a genomic/next generation sequencing test and if she's switched markers once already, I think you should at least consider a new biopsy. Also pls post what treatments have been tried so we can make better suggestions about options.
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hi guys. I have a question. Is herniated or slipped disc/disk common in cancer patients? Or does back pain immediately mean spinal metastasis
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back pain does not automatically mean spine mets, but certainly you should bring it to your doctors attention
Not sure how common disc problems are, the usual problem is fracture
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dear Olma61,
Are your mets in your spine? If yes what did you feel as your symptoms
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yes, I have spine mets but I am one who never had pain with them (yet). They were found on a PET scan in 2017.
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I've mentioned this elsewhere but I had a herniated disk in '16 and spinal mets in '19, with sacral fracture. Herniated disk was WAY more painful, mostly because I had a disk blow out with a bit touching the spinal cord, resulting in significant burning nerve pain and neuropathy in my big toe that exists to this day. The disk herniation was immediate pain, the mets pain was like a thief in the night and while there were, looking back, signs months prior, it wasn't until I did a common athletic move that has caused problems in the past which set it off. From there it got worse and worse until I could no longer lift my leg and then it fractured.
There are a lot of ladies who have disk degeneration or arthritis in addition to mets. My lumbar mets cause me no pain, but I have to ensure I continue to keep the spine flexible and strong because I don't want another prolapse. Not all back pain is mets, but if there is ongoing pain beyond two weeks then you should raise it with your doctor.
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In the general population, herniated discs are common. Most people have no pain. But when there is, it's often very painful.
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thank you for all your responses! Does disk herniation cause weakness in the leg too
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Hello,
I am not stage IV (hopefully) as I am waiting on the results of my CT to see if my cancer has metastasized to my lungs.
Here is my question: Why are there no regular preventative screenings for Breast Cancer patients? Why does it take waiting until you have symptoms to see if it has spread? This means it is usually too late to treat effectively.
Pap smears, mammograms, colonoscopy, all designed to detect early development of cancer. But now that you have had it, and are more at a risk of it spreading elsewhere in your body, there are no regular scans available.
It just doesn't make sense. If I were in charge, there would be scans (CT, PET or MRI) available every 2-3 years for breast cancer patients. This would provide peace of mind in many and maybe allow early treatment for others.
Just my two cents......
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I have one large bone met on L1. I had no back pain, but had referred pain to my left hip. The lesion is pressing on the spinal cord, so it transfers to a sharp pain in my left hip when I pivot. I start radiation next week to see if we can shrink the cancerous cells so that it no longer impinges on the spinal cord
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ALovingDaughter - in my instance the disk didn't cause leg weakness (it did cause "foot drop" where I couldn't lift my left foot),but the mets did. I would suggest you definitely bring it up with the oncologist because anything causing weakness usually means something is pressing on the spinal cord or nerves somewhere and needs to be dealt with (even if it is just a herniated disk - that would be a neurosurgeon) as it can impact other more critical areas like bladder control.
If there is any ANY loss of sensation or numbness in the "saddle" area (between the legs, genitals area) or incontinence,that is a medical emergency and is absolutely an ER trip (signs of cauda equina).
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Stina, the reason there is no screening for Stage IV is that studies did not show it provided any survival benefit. Finding it once it's symptomatic or finding it 6 months early, the person still dies on the same date....might have just gone through 6 months extra 'treatment'. Look up "lead time bias" for explanations of this. Also, the screening itself exposes the pt to radiation, toxic contrasts etc so it's not without risk. PET esp is high amount of radiation.
BUT.... I think we need a new large study on this. I believe the last one was from late 90s/early 00s. These have to be super large population wide studies and rigorous so they're expensive but I do think we need to run them again because a) we have had advancements in those 2 decades in imaging & b) there are some new studies on aggressive treatment of oligmetastases and oligoprogression which *might* be showing some OS benefit. I think it's too early to tell.
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thank you, SondraF. i'm not actually the patient but my mom. My mom is struggling from back pain and she experiences the "foot drop" that you said.
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Stina - your question is one i keep asking. Screening/detection options. After the bi-lateral, there seemed to be none. 2 1/2 years after bilateral,new cancer in r-axilla (previous 2 cancers on left). It presented itself as lymphedema in r-arm, clots ruled out. Nodes had only been removed on left side in 2009 (lumpectomy) and again in 2016 with bi-lateral. There were no scans or other checks during those 2 1/2 years. 1 year after detection, it mestatisized, even though CTs suggested tumor was shrinking.
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Hi, my calcium has been elevated (10.3 - 20.4) since last year but my PTH in on a normal low (29), it’s very unlikely it’s parathyroid. I’m concerned it’s hypercalcemia of malignancy, that some kind of cancer is causing it. I’m having issue with my throat, I’m feeling weird sensation and dry throat but no pain, my ENT thinks it’s allergy but it’s been bothering me for a while. Now with this elevated calcium again it’s worrying me. I will appreciate any info about hypercalcemia before cancer diagnosis or met
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I agree with moth, that the idea that finding mets earlier does not matter needs to be revisited. An additional point is that time of detection may mean a quality of life difference. For example, hormonal therapy if liver mets are found earlier vs. the need for chemotherapy if found when the liver has reached a critical/dangerous state; or treating bone mets before a fracture occurs rather than after.
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I guess I am looking for someone in a similar situation as myself. My journey started with the discovery of enlarged supraclavicular lymph nodes on a head CT for another issue. Biopsy showed metastatic adenocarcinoma, no obvious primary. PET/CT showed involved left internal mammary node, multiple mediastinal nodes, the supraclavicular nodes (5.7 cm or about 2inches), and some level 5 neck nodes. No evidence of disease in organs, brain, or bones. Recent mammo was clear. Breast MRI clear. Thyroid scan clear. Genomic testing on node tissue finally showed 81percent chance of breast cancer. Primary never identified . I was given diagnosis of Metastatic breast cancer, Tx, N3, M0, HR neg, Her neg, considered unstaged. So, I am triple negative, PDL-1 neg, and a genetic mutation of PALB2, which is almost as bad as the BRCAs. I started chemo with Carboplatin and Gemcitabine 2/17/21. Currently on cycle 5 of 6.
So I have breast cancer that is not in my breasts. Lymph nodes only. Surgery not an option, no lesion in breasts to remove. I have metastatic disease, but not considered Stage IV. I am triple negative so treatment options are limited. No immunotherapy since the PDL-1 is negative. I do qualify for PARP therapy because of the PALB2 mutation.
So when I try to find information about metastatic triple negative breast cancer treatment, prognosis, chance of recurrence, etc it always presumes surgery is involved, there is a primary site that can be measured, there is a stage to start with, there are organs involved. My round peg does not fit in these square holes. Even filling out the form to join this site I had to answer I don't know to a lot of questions since " none of the above " was not an option.
Anybody else out there not fitting in these standard categories?
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Teaturtler, welcome to the board & sorry you find yourself here.
I think the closest staging is 3C because I think that's any T + 3 lymph nodes but yeah, I can see why they don't want to really stage it.
So the thing is that strictly speaking, metastatic means "escaped the original tumor site" BUT in common parlance here metastatic is Stage 4 - distant organ. Distant lymph nodes is controversial. I recently saw oncologists on twitter debating what constituted distant = how far from axilla did it have to be & some arguing that all lymph mets regardless of location should be 3C & treated with curative intent (as opposed to stage 4 which is not treated with curative intent)
Also not sure if you know this already but when no primary is found, that's called 'occult' cancer. Might help if you're doing literature searches to look for that term. Not hugely common but not uncommon either - we have members with occult disease here & my aunt had it.
I hope you are able to find support here! The monthly chemo thread perhaps? & we have a couple triple neg threads (for Stage 4 & otherwise) and there's also the general hanging out in Mel's living room thread which is open to stage 4 & non stage 4 https://community.breastcancer.org/forum/163/topic...
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Dear Teaturtler,
I am another round peg who does not fit into a square hole.
Like you, I have breast cancer that is not in my breasts. It was discovered by accident when I had my thyroid removed for papillary thyroid cancer—along with 3 central neck lymph nodes, which turned out to contain breast cancer (possibly lobular). HER 2 status was unclear as there wasn't enough node tissue to run FISH testing.
Despite extensive testing/scans, no primary was ever found, but because of the neck location, it was considered metastatic Stage 4.
Recent PET scan and mammogram were clear. Genetic testing revealed no mutations. There was no breast surgery because there was nothing to cut out and no radiation because there was nothing to radiate. Treatment at this time consists of Anastrozole.
I just celebrated my second cancer-versary.
Wishing you good luck, Teaturtler!!
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Teaturtler, I do have metastatic to my whole spine, skull, hips, femurs and stomach but also another occult, never found in my breast. I’m sorry. I know it’s totally confusing. I’ve actually had mets for eight years, diagnosed for two. I hope you can get some answers.
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to everyone
Hello, recently I had extreme pain in my right leg. It is now to the point I could not walk. I went to a spine doctor as I thought I had sciatica. The mri showed a mass 1 to 2 cm lumbar 1.
Today I took a ct scan, tomorrow a pet scan.
Is anyone have the same ER PR her that I do or have any of you experienced this
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Hi, Positive. You can go to the bone mets thread and read up on bone mets. I have ER+ bone and bone marrow mets from my skull to my knees. I hope your scans come out okay. Please keep us posted.
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Positive - Sending you hugs and hoping scans are clean. I am ER+ , PR seems be be not listed/unknown, HER- . Also PDL-1, and AR. Have not experienced bone pain, but am wondering if some pain in lower back right rib is from radiation and recent pleural efusion; or maybe going for months with limited use of R-arm and sleeping weird do to lymphedema; or maybe not doing much stretching, strength building for many months, even though I do do a lot of walking/hiking.
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Everyone,
I have read on here thatgetting a second opinion is a good idea.. I’m just diagnosed with Stage 4 . All week I have done scans, liver biopsy etc.
Why is the second opinion important and did any of you get a second opinion.
Linda
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Hey Linda,
It’s me, again. I guess ten years at stage IV gives me a bit of amateur cred 😉. I had a second opinion twice. In my case it was self pay (I belong to Kaiser) but it was worth it to have a completely fresh set of eyes look at the situation and make a tx recommendation. I had my second opinions at Stanford and my initial visit involved a thorough work up, in addition to records from Kaiser. It made my treatment decisions very clear when both Kaiser and Stanford proposed the same tx plan. There was so much info coming at me in those early days and I had an unusual complication that required hospitalization so it really made me feel secure and confident in the tax plan. Like you, this was at a time when I was beginning to learn about the very complicated world of bc. Take care.
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Positive - I had a second opinion - covered by my insurance. This disease is clearly so serious, it seemed prudent to have confirmation of my tx plan and hear a different perspective. An unexpected benefit was that because that conversation was so much easier, it convinced me I needed to keep pushing for the switch to the originally recommended/referred MO (insurance issue that resolved with time). It's important for me to be able to have a comfortable conversation with him, and that was something I couldn't do with my 'interim' MO
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I also had a second opinion. I think it's always wise to do so. This is your life, and you want to feel confident you're making the right decisions for you. I’m sorry you’ve become Stage IV.
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Positive- I am considered ER+ , PR-, HEr2 - ( although i was 2+ on IHC so some would consider that HER2 Low but to my onc, i'm negative). However, My lymphnodes were ER/PR +.
As for a second opinion, I always think it's a good idea. It's great to have another set of eyes on it and another perspective because your treatment plan is important, and it's important that you feel comfortable with what they are proposing. It is your life after all. Where I live , there isn't much of a second opinion I can get but I do see the head of Breast cancer. I do have a team and they have so far been great. I did get a second opinion from a surgeon because the one who had done my biopsy had blown me off previously, and when she discovered the DCIS, she blew it off as " no biggie, they'll laugh at me for sending you to the Cancer clinic. But I will send you anyway. Don't worry" As if being told at 30 that after 2 years of symptoms being brushed off , I was right to be concerned. Anyway, as the ball started to roll, she was just never around. SO I saw a different surgeon who I jived with so much better. She was amazing and I felt like I was heard. So a second opinion can also just introduce you to people that you feel are on your side and will work for you.
That's just my two cents
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lungs do not hav nervous receptors as far as I know so can not cause pain . What you describe sounds more like muscular/ tendonal/may be even lung lining thing.
I had breathlessness and persistent dry cough for a bit more than a month before diagnosis
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Jumpship, I would definitely talk to your doctor. Even if it's just mentioned "for the record", your doc can monitor it and follow up with tests if it persists. I mention "stuff" to my MO, like I feel that I'm getting clumsier and she asks a few questions about headaches and/or vision changes and then she makes a note of it in my chart.
For your peace of mind, you'd probably feel better mentioning it to your doc.
Good luck! (((hugs)))
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