If you are not Stage IV but have questions, you may post here
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Mavericksmom, not to scare you but unfortunately cancer cell can travel through our blood not just the lymph system. if you’re having symptoms right now, your Onco or surgeon might order a pet scan then followed by biopsy, if needed.
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Anx is right. Cancer does not need to be found in nodes in order to have spread. It can spread through any tissue, blood, or pass through the nodes and not leave a trace.
As for who diagnoses a Stage 4 recurrence, it depends. There are many ways it can be found, sometimes because of symptoms and sometimes by accident. I had recently seen my oncologist so I went to primary care because I didn't think my very mild breathing symptom was cancer related. She suspected asthma but had an xray done which showed a pleural effusion, so then I was sent to pulmonary. They drained and tested the fluid and then called me to say it had cancer cells in it. After that I went to my oncologist to figure out a treatment plan.
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Similar story to parakeets… I was originally diagnosed in 2001 and had no symptoms for years. Then, in 2016 I caught the bug that was making the rounds and couldn’t get rid of the cough. My PCP sent me for an X-ray which showed some fluid in the lung. He ordered a CT scan (anx, not sure about the US but here our PCPs can order CT scans and other tests but it tends to take longer than when a specialist puts in the order) which, by the time I had it, showed a lot of fluid in my rightlung. Within three days (remarkable given the CT scan was done on Christmas Eve - my PCP called me back the same morning) I saw a pulminologist who drained some of the fluid off my lung. That came back as BC.
I initially had one positive node but also had extensive vascular invasion in the tumour. I always felt there was a high probability that it would turn up again.
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Hello,
I hope you don't mind if I post here. Im stage 2b, ER+/PR+, HER2-, on Verzenio, 6 months out from mastectomy. I hope you don't mind if I ask- I'm wondering if folks have experience with lung nodules, specifically mixed solid and ground glass nodules. I just had a 8mm nodule found in my cancer-side lung. I'm awaiting further tests, but of course having anxieties. Anyone had this and have it be nothing?
Thank you in advance.
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xfitmama2: I have several of those nodules in my cancer-side lung which are benign. The doctor thinks they were caused by inflammation. There is no way to tell for sure without the tests (repeat CT to check for stability or biopsy.) I hope yours turns out to be benign, too
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Maggie- wondering what kind of benign nodules you you have- are theymixed solid and ground glass similar to mine?
Thanks. I have another week and a half before my scan. Sigh
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xfitmama2: My nodules are mixed solid and ground glass. They have been stable for nearly a year now (3 CTs) so they haven’t been biopsied. Waiting is so hard. I hope yours turn out to be nothing to worry about
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xfitmama2, I don't have lung nodules, not that I know of however, I want to let you know what my MO told me when I had a CT scan on my abdomen. He said that with scanning, you can see all these unusual stuff that every healthy person has and are normal. He said not to worry if they find anything that sounds bad but doctors know that is ok. Probably, most of healthy people have nodules, etc that are benign.
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So based on this my MO is requesting that I see a Pulmonologist and is requesting a PET scan possibly a biopsy depending on what the pulmonologist says. The doc says it could be 20 different things and not to worry yet. Also, that depending on insurance we may have to wait the two months for another CT if insurance will not do the PET. Needless to say, i will be a nervous wreck having to wait two months.
I know I put this on another post, but before I saw my doctor.
Anyone have something similar and maybe what it ended up being?
also, no surgeries within 1 year, non smoker, only cough I have is when I laugh too hard or too muchIMPRESSION:
1. New 1.6 cm opacity at the anterior left lung base is probably minimal focal atelectasis or infiltrate formation. Given its slightly nodular configuration, short-term follow-up is recommended to document resolution, with repeat noncontrast CT chest in 2-3 months.
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bookworm14: Your MO is giving you good advice as nodules are most often caused by inflammation or a prior infection. They have you wait for three months before a follow up CT because they are looking for growth. If the nodule grows then it might be malignant and a biopsy is done to check. There are protocols pulmonologists use to determine surveillance based on nodule size, appearance, location and medical history (called fleischner criteria.) Being a smoker and having had another cancer are two of the reasons why they bother to do a follow up CT. Hopefully your nodule remains stable.
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thank you maggie15.
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xfitmama2, I had one lung nodule show up on a CT scan in Jan. Right lung, where I got radiated. It had some ground glass characteristics. When I had a repeat in April or May of this year, it was gone. I attribute it to radiation and inflammation; at least that is what my MO says and I have to trust her. I do trust her.
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Hi, thank you for allowing me to ask a question here. I was diagnosed with BC 5 years ago which is why I am a member of this site. However, in the past week my husband has had some very concerning CT scans that I believe are going to lead to a Stage IV esophogeal cancer diagnosis. I know enough to understand what is coming. At any rate, I know there was a thread here at one time about getting affairs in order, and I think that would be quite helpful but I can’t seem to find it. Can anyone direct me to it? My husband had just quit his job before we started down this rabbit hole so he has no life insurance and we have no mortgage insurance. I’m assuming it’s too late to get any of that. <sigh>. Any thoughts would be welcome.
Thank you so much for your help. I am very grateful
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rdeesides, I'm sorry that you find yourself in this situation. I was given the get your affairs in order talk by my pulmonologist last spring; thankfully things took a turn for the better. However, I also have a precancerous condition of the esophagus and am well aware of how aggressive esophageal cancer can be.
The gold standard is to consult a lawyer since rules and regulations vary by state. Call various lawyers to get a ballpark figure quote since fees can vary. Before meeting with one ask for a list of information needed and bring that with you to cut down on the billable hours. Legal Aid is an option if you are income eligible. If there are any "complications" in his situation like children from another marriage or business ownership a lawyer is a must.
I live in a state which has boilerplate forms and allows you to do everything without an attorney. Banks have notary public employees who will notarize documents for free. I actually took this route but it is not always possible. I'm not a lawyer but did work for one in the summers a while ago so that, as well as experience as an executor, gave me a good idea of what needed to be done.
Simple ways to make sure accounts/property transfer outside of probate is to have real estate and vehicle titles in joint names, joint bank accounts or a transfer on death clause (ask at the bank,) and beneficiaries named on all insurance policies and retirement accounts (don't forget about former jobs.) He will also need a power of attorney to let someone make financial decisions and transactions while he is alive but incapacitated and a medical advance directive for someone to make medical decisions. The medical directive also varies by state but your local hospital can provide him with the correct form. I receive medical care in two states so I filled out one for each. Also, some health insurance companies have their own forms which allow a proxy to deal with the insurance company in his name.
In addition to all assets take stock of any accounts such as credit cards, loans and utilities. Write down all the account numbers, any online passwords and other relevant information. Get the utilities in joint names. If a vehicle loan in his name does not have life insurance and you want it to continue talk to the bank about rewriting it. Funeral decisions should be made (but not necessarily paid for) in advance. Research the cost of various options if that is important.
This sounds daunting but is something everybody should do since the future is unpredictable. Joint accounts/named beneficiaries, power of attorney and advance medical directive are a good place to start. Hopefully things turn out better than they look right now.
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Anyone have BC show up in gallbladder?
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how often should my mom do PET scan ? She was diagnosed with recurrence and not eligible for surgery due to health issues and also her PET scan showed 2 small modules on the lung 🫁 But they did not do biopsy and just decided to give her hormonal therapy
now for us to check the status of the tumor
how often she needs to do PET scan0 -
fathea, Doctors generally scan when the information from the scan might change the treatment. If your mom's symptoms are stable on her hormonal therapy there would be no reason for a PET.
People who are using other treatments like CDK4/6 inhibitors often do get regular scans to see if those treatments are still working. Since AIs have been around for some time their effect is not monitored like those of the newer drugs.
It sounds like the doctors are trying to preserve quality of life for your mom rather than being aggressive and causing rapid medical decline. I'm in a different situation (progressive lung damage from radiation) but my only option for recurrence is AIs since exacerbating the ILD would be more dangerous than the cancer. I've had to come to terms with the fact that treatment would be limited to hormonal therapy and the many newer options are not a possibility for me. It's a balancing act between doing good and causing harm. All the best to you and your mom.
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Hello everyone,
I’m wondering if anyone had a sacral met as first indicator of metastatic disease. Bone scan due to low back pain lasting more than 3 months. I had uptake on sacrum but dr said probably a stress fracture as that was only spot. I had no fall or injury to cause stress fracture. He did ct to make sure but said it was inconclusive as scan didn’t go far enough(not sure what that means). He’s rescheduling me for another ct and if not definitive then a mri. Trying not to worry too much, but definitely weighing on me. thanks.
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chaclaray, I’m sorry for your worry. I have mets throughout my whole spine, but nothing sees it but MRI. If CT can’t give you a definitive answer, I would definitely ask for an MRI.
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Thank you KBL for your response and kind words. I will definitely ask for MRI if I can’t get definitive answer.
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Hello... thank you for letting me ask a question, and have a ramble here.
I had a CT scan 2 weeks ago, this is my 4th since diagnosis as im part of a clinical trial. Im my last ct scan it was noted I have slight thickening to my 5th rib (otherside to the BC) and a bone scan may be helpful. The report also mentions there has been no significant change to this area since my first ct 9 months ago.??
This has left me scared and confused. I go for the bone scan tomorrow. None of my other ct reports have mentioned anything about my rib before... but apparently its on them all. I do experience pain in my ribs back at times but have always put this down to bad posture.
Has anyone ever experienced something similar? Thanks
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Hi @inneedofhope. We're so very sorry for the worries that bring you to this thread — we know others will be by shortly to weigh in with their advice and experiences. In the meantime, please try to remain positive and calm until you know more about what's going on.
For more information, including what to expect, check out Bone Scans.
We hope this helps!
—The Mods
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Hi @inneedofhope , I get regular chest CTs and what is mentioned varies from scan to scan, probably depending on the radiologist who reads it. Since they are ordered by my pulmonologist I always hear about the extent of pulmonary fibrosis, collapsed lung lobes and lung nodules (but there is some variation on how many are mentioned, sometimes only those in my bad right lung and sometimes those in the left are included.) I always hear about how my thyroid is deviating my trachea and restricting my airway since this could be life threatening. The radiologist doesn't know that it is under surveillance and to avoid intubation the doctor is putting off surgery until the last possible minute. It's pretty common to have degenerative spinal changes, scarring due to lumpectomy and probably benign sclerotic bone lesions mentioned. A couple of times carotid artery calcification, liver and right kidney have appeared in the report.
It is disconcerting when you hear about something worrisome that was previously there. I once got the comment that two enlarged mediastinal lymph nodes had returned to normal size, good news but something that I think should have been mentioned when they first appeared. I'm glad you are having a bone scan to investigate the rib. I hope it turns out to be something inconsequential.
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Thank you Maggie for your reply. I dont know how you cope with all those scans, I find them very anxiety inducing. Im off for the bone scan today and 🙏🙏🙏 its benign. I just cant understand why it hasnt been considered significant up until this point. My oncologist just said it is different radiologists 🤔 I always think with every scan seems to find something needing further investigation... it feels like its constant uncertainty.
Im sorry to hear of your health issues and thyroid. I hope your team are taking good care of you.
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@Sweetpee Hi, Of course it's ok to ask these questions .Although we don't always have all the answers but we try to rationalize with you.
Sounds like your mets have been moving slow on your previous therapy and now may be time to move on to another drug. We never know for sure which drug will hold us stable and for how long. Sometimes we can achieve NED with chemo that our cancer responds well too. So yes one can work and one can fail.
We are lucky that there have been many new drugs added to the arsenal since 2016. I have seen so many advancements since I was originally diagnosed as I'm sure you have. I try to remain hopeful at Stage IV that the next drug around the corner will help me live a longer life.
Sending you strength and good vibes.
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@Sweetpee - We're glad you posted. Please feel free to ask your question in this discussion, as well as any other forums/discussions related to Living with Metastatic Disease. We also offer free virtual meet-ups with other Stage IV BCO members where you can share and ask questions in real-time. The following webpage has information about registering for them, in case you are interested: MBC Zoom Meetups: Register Here to Share Face-to-Face. Let us know if you have questions!
We hope this helps! And again, welcome to the community!
The Mods
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My apologies for previously posting in the Bone Mets forum. I'm still having trouble navigating this newer format.
I've been away from this site for some years attempting to leave behind my prior stage 2 breast cancer journey in 2006 age 49. I was 100% positive ER, PR, Her2 negative IDC (left breast) with 1 positive sentinel node, 18 nodes removed. I had lumpectomy, chemo with dose dense A/C x4, Taxol x4 and radiation treatments. I briefly tried Tamoxifen but did not tolerate it well so had oopherectomy to switch to Lextrozole (Femara) - which I took for 9 years. Dx with osteopenia allowed me to get zometa infusion and then Prolia injections - stopped 4 years ago because osteopenia considered stable.
I've been fortunate to have been seen by an oncologist (2nd onc as I switched from my first onc) - who has been seeing me twice yearly and providing the zometa and prolia treatments. I've been treated the past 10 years for hypothyroid by my PCP and had a recent negative thyroid scan in February.
I just saw my oncologist this past week and finally graduated to a yearly appointment schedule. I was so happy that I might have moved a step forward with my depression and fears of recurrence. Then the next day I received a phone call that my CEA was elevated to 7.8 - so the lab was repeated 8.1. The January CEA lab was 1.8 and CA 27/29 within normal range. All other blood labs are normal range too. Mammogram last month clear. Cologuard screen last winter was negative and prior 2 colonoscopies were negative. I had a very bad time during A/C chemo with GI issues and now have moderate/severe diverticulitis which I carefully manage.
I've had recent minor shoulder pain (May) which I felt was muscle strain as I am physically active. I lift heavy items and manual farm chores. The pain resolved with some ice and Advil as I felt it was a strain. I avoid sleeping on my right shoulder side as that will aggravate it. Also, I am a daily dog walker weather permitting so my physical fitness and weight is good for age 66.
I have a bone scan scheduled for later this week. All my former terrors and stress has returned because I fully know how silently cancer can recur for some survivors without symptoms. I HATE this disease!! CT scans have been approved fro chest and abdomen but not scheduled yet. I feel like I fooled myself with my prior aggressive treatment and healthy lifestyle trying to cope with my PTSD.
Lastly, I am overseeing my mother's care in a local nursing home (5+ years) - she is age 96 and her younger brother (my uncle) who lives nearby alone age 87. Stress has been my middle name for MANY YEARS…. I was dx in 2006 when my father went into a nursing home multiple strokes - he passed age 88.
Mentally this elevated CEA lab report has shattered me because physically I felt fine. I had to contact my PCP for xanax script because I am stress exhausted and cannot sleep.
Thank you for letting me share…..
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@cp418 Sorry to hear about all the stress you have been dealing with and this rise in CEA. By your history you are very on point with your healthcare and do everything in your power to reduce recurrence risk. If this does turn out to be something it's not your fault. We all feel like you and question how we lived our lives and try to find answers. Sometimes there just isn't a clear reason and treatments fail us, we don't fail!
That being said the jury is still out on this. I know how hard it is to stay positive and not go down the rabbit hole. You have been vigilantly watched very 6 months and sounds like your are a great advocate for yourself. Your care team is right on top of this and have your tests ordered. Take a breath and take it one day at a time. Keep your mind busy and try music or meditation a couple minutes a day to kinda reset your mind. Do whatever helps you destress a little, lean on family and friends for help. We are always here to listen.
Sending you positive vibes, strength and a big hug. Fingers crossed for good results.
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waiting for a recurrence is like waiting for the other shoe to drop. After 9 years…the other shoe dropped.
first go round I had stage 3 (b?, c?) never able to stage it as I was pregnant with my second set of twins… y first set of twins were 15 months old at the time. AC/T, lumpectomy/reduction/ re-excision to get clear margins…rads…ovarian suppression and Letrozole from the get go.Clinical trial for palbociclib and zometa infusions…a few years later ovaries removed —
brought up my concern of changes, fullness…increasing truncal lymphedema —just thought I wasn’t doing enough lymphatic drainage…got new compression, started back with a LE therapist…moved back from one-year surveillance to six months…onc was like…it’s nothing…dime a dozen…kinda waved me off, but I persisted anyway.
in September, got a mammo and ultrasound, but no bx…got an MRI and bx two weeks ago…it’s back.
have a pet/ct and SO/Onc appointment 11/28…I am fearful my symptoms are IBC. ‘Bug bite” on breast in July that’s never really gone away…increasing lesions in breast folds that look like heat rash or pimples…but these haven’t cleared…which seems easy to explain away with 24 hour compression wearing. In the past 6 weeks though—intense nipple pain…itching outside of breast…add to this my hip and distal femur pain and I’m thinking I’ve progressed to stage IV with IBC. My kids are 11 and 8 and there is so much more for me to do. Thinking about how I’m going to wrap presents after chemo…as I’m sure that chemo/mastectomy/deip flap?/rads? are all back on the menu.My mom is now 84, she helped tremendously 9 year ago, but she just can’t do it again, I’m sure. She lives a few houses away…and My husband and I have been holding in this news from our kids and I’m afraid this news will kill my mother…or worse, give her a stroke. And who is going to take care of her? I’m so sad, angry, guilty (!) I know—it’s nuts, but…
I’ve been coping okay since finding out 5 days ago…but the IBC panic and stage 4 possibility have been really hard to overcome. My parents are aged and have some mild dementia…I am kinda the glue for everybody…I am grateful for the time I’ve had with the kids, and that even the second set of twins who got chemo in utero are fine…and I know this is just the beginning of a new part of the journey…but…it’s devastating.4 -
@ncswic2024 I'm so sorry to hear all you have been through only for this ugly disease to return! One thing I do know is that when I was diagnosed Stage 1 in 2016 and until now here have been many advancements in treatments available. I am MTNBC so I don't particulars about IBC advancements but I'm sure it's better than 9 years ago. Regardless it all just stinks!!!!!
It's been a little over a year for me being Stage IV and I was in the full blown panic mode for months. My mind wouldn't stop reeling thoughts of despair. Your life has been turned upside down and it will take time for some type of acceptance to set in. I still have days where I think how the hell did I get here?? I now truly try to take it one day at a time to be able to live a little less tortured life. There will be some level of relief when you start treatment and begin CRUSH this cancer back!
Take a big deep breath and focus on you. I know there are people that are depending on you and you are a big help to them. Others will have to step up and help with your parents, family, friends , hired help etc. It may not be the way you are used to since you are the glue but someone else will be the tape for now.Things always have a way of working themselves out.
Sending you positive calming thoughts for strength and hope❤️
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