If you are not Stage IV but have questions, you may post here
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Hi Capri, I would ask your MO about reducing the frequency. How about every two years for a little while since you have done so well for so long? I didn’t have scans with the exception of when I had specific symptoms, went for almost 16 years before my stage IV diagnosis. While it seems counterintuitive, it’s my understanding that finding spread early may not increase life expectancy except under exceptional circumstances so why add a bunch of radiation and stress
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I have recently joined as a new member. Like many, I have spent many years gleaning information from the post of knowledgeable individuals on these boards.
In short, my cea tumor marker has been high from the beginning of this journey. However, my CA 15-3 has never been high from diagnosis until December 2020. My CA 15-3 was 25.2 in June 2020 , 50.4 in December 2020, and 56.7 in January 2021. I had clear CT scans in December 2020. My oncologist sent me for a PET scan and notable findings are 1) 6 x5 mmm module along the left major fissure that demonstrates a max suv of 3.1 and 2) mildly prominent right lower quadrant mesenteric nodes that all demonstrate mile uptake with a max SUV of 6.4. With the weather in my area being bad, the results were passed along by the physicians assistant. She said the doctor was 'pleasantly surprised' with the PET results. I have been scheduled for additional CT scans in May 2021.
My questions are 1) should I be concerned about the elevated Tumor markers (not extremely high but trending upward) 2) what limitations exist with CT scans (suspicious areas being certain size, etc.) 3) for those diagnosed at a later time - was your doctor watching specific areas of interest before a stage IV diagnosis 4) is a biopsy needed to confirm progression?
I was told from the beginning that my cancer was aggressive, had positive margins on the chest wall, lymphoma vascular invasion, very high KI, etc.
I am worried about a recurrence and would be greatful for any information willingly shared.
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Hi Mitzy, I am no expert but will try to answer your questions.
1. Some MOs don’t pay any head to tumor markers and some people don’t have tumor markers I don’t. . They are usually read in conjunction with other symptoms and alone may not tell you much. it is up to your MO. Other tests such as scan may reveal if rising tumor marker are of concern. Can anyone add comment here please?
2. CTs like any scan can only indicate masses / changes/ abnormalities. A mass indicated on a scan needs to be followed up, usually by a biopsy wherever possible. It may or may not be recurrence.
3. My MO is doing bloods and scanning as required. Changes in blood counts are closely monitored to see they remain within normal limits. There are really no rules about where cancer will recur. Everyone’s cancer is to some degree unique. Some places are more likely for recurrence for some types of cancer.
4. Wherever possible a biopsy is the preferred test to confirm recurrence and the tumor status. Some cancers morph . Mine changed from TNBC to HER positive, which changed my treatment pathway.
I see your diagnosis and treatment was some time back. I wonder if you still have follow up with your MO now that you have passed the 5 year mark? Always best to ask your doctor if / when you get the opportunity.
Hopefully others will chime in and add what they know.
Best wishes to you.
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Mitzy Girl, I would be so annoyed that the MO's assistant said the MO was pleasantly surprised. What does that mean? I overthink everything and I would need to have the MO tell me what that means. What I know about PETs is that it's not great at seeing stuff that is less than a cm.
Where is this? : 1) 6 x5 mmm module along the left major fissure that demonstrates a max suv of 3.1 and 2)If this is in reference to your lungs--lung nodules that are 5 mm or less are typically benign lung crude and the suv is pretty low, which is good.
re: the right lower quadrant mesenteric nodes note- according to google those are a lymph nodes in the abdomen around -ish the appendix and seems like that is a fairly common finding when doing scans and not typically anything to worry about. https://www.ajronline.org/doi/full/10.2214/ajr.184...
So it looks like you are in a waiting pattern because you had cancer in the past they can't just disregard these potential findings as no big deal so they need to do a scan in three months to see if these findings are stable or if something changes. If stable then all good, if something changes then more tests and could lead to a biopsy.
I hope that helps and if anyone has better/or different knowledge please correct me :-)
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Thank you ladies for that valuable information, it has calmed my fears! Glad to know none of that sounds remotely serious, at this point. I have several 'presumably benign' lung nodes. Those are fairly stable in size and was told by the oncologist they were most likely caused by radiation treatments. I do still see the oncologist twice and have scans yearly.
I believe my imagination went wild this time around. At the top of the PET scan results it said 'PET scan for restaging' and the doctors comment about being pleasantly surprised was enough to send my onto the ledge.
You are my heros! Keep up the good fight!!
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I apologise Mitzy for not taking on board the prelude to your questions.
Good luck for scans in May!
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Hello everyone,
It's pretty late in the night where I'm at while posting this but in the last 48 hours it has been nothing but google searches for me and I can't take it anymore.My mom who is 50 was diagnosed with ILC on 1/19. The tumor grade is 1 and she's ER/PR + and HER2-. She's having a mastectomy this Monday 3/1. They did an ultrasound on her lymph nodes and 2 were enlarged so my first fear was that the cancer has already gotten there, which is bad enough. Well today she did blood tests and her Anion Gap is low (bellow the standard range according to the results). I've researched this and it's rare and means low Albumin in the blood. This is a sign of liver disease. On top of this she seems to have developed a Spider Naevi on her nose in the last 2 months or so (another sign of liver damage). She doesn't drink alcohol at all it's not caused by that, she's not on any medication so it's not that either messing scores up.
I know there's other factors that could cause it but at this point my mind is just screaming that it's liver mets. It's just too many things to just be a coincidence in my head. I know the sensible thing to do is not jump into conclusions and wait but my heart is crushed. My mom is my best friend and the only person in the world I can feel I can be my true self around. I don't mean to be sappy. I've read about it every day, you warrior ladies kicking cancer's butt and keeping it away, living lives full of happiness and making memories but it still crushes me. Me and my siblings need her more than anything. Her first oncologist appointment is March 10th which is where I'll also be asking about this but I just needed to let it out.
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Whoaaaaaa. Time to take a deep breath and walk away from Dr Google for a bit.
Just on the basis of what you have provided, she has a low grade cancer that is estrogen positive. Her lymph nodes could be enlarged for other reasons than cancer, and as they are operating first, I imagine its a small tumor that has a low risk of having spread. If it wasn't, it would have been chemo first and she would have been put through scanning. They won't be able to tell if the nodes are cancerous until they operate or do a biopsy, and since they are operating so quickly, they will find out soon enough. Please don't jump the gun assuming the worse, or that node spread automatically means mets. There are two schools of thought as to how cancer spreads, so not even medical science is 100% on their understanding of metastases a being fully driven by spread through the lymph nodes.
As for the blood work - trust the experts on that as well. Someone else has posted on here about how high calcium numbers don't necessarily mean bone mets and could be something else. The body is complex - all sorts of things could be causing fluctuating numbers on any given day. Fatty liver disease isn't necessarily caused by alcohol consumption, and spider veins on the nose aren't necessarily all caused by liver inflammation.
Finally - let's assume the worst here. Let's assume she has liver mets. The drug cocktails today are excellent for keeping disease at bay for quite some time, especially in estrogen positive women. Its not like pancreatic cancer where its caught very late and there are limited treatments. I know that is of limited reassurance to a son who wants his mom around for a long time yet, but we have many ladies on this board living that life and living life well, a you've seen.
Your mom is lucky it was caught early and lucky its at a low grade - based on what you posted, it looks fairly "garden variety" breast cancer. She likely has an excellent prognosis and could very well not have to even undergo chemo. I know its hard not to try and cram everything you can into your mind about cancer when it first appears, but it could very well stress her out if you are stressed out about things that very well may not come to pass. Wouldn't you rather spend quality time with her after her surgery than worrying about something that isn't even confirmed yet?
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Eric, I'm sorry you have such worries, but I'll echo SondraF and say that blood test results can be misleading. A little over a year ago I passed out and ended up at the emergency room. They did a wide range of testing on me, as appropriate for someone recently actively treated for cancer. My blood tests of that day, I look at the results now and wonder if I was dying, as several measures were askew in a variety of ways. I also had chest xray, head CT, virus testing (pre-covid) ... The result of all that was I had a cold. Several of my blood tests were way out of range, because I had a cold. The body is very responsive. ONE measure, one time, is rarely a good indication of anything. That is why docs look at the trend over time if they have that data. One measure isn't enough information.
All my best to your mom as she has her surgery tomorrow.
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Anyone dealing with mediastinal lymphadenopathy? An enlarge soft tissue area was found in August 2020 after an abnormal bone scan. The area is stable at 12mm, but I have to go back in another six months.
The original Pet scan in August 2018 completely missed a lymph node (10mm of cancer) under my arm full, but the scan did light up on my sternum and I was told it was arthritis. Now a osteoblastic lesion showed up on a bone scan in August 2020 and no reaction on PET and possibly enlarged lymph node on CT. They do not really know if it is a lymph node, thymus gland, or something else.
How worried should I be with this? My doctor says my tumor markers are low so we do not need to worry about it.
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SondraF- Thank you for your kind calming words! I've been trying to stay off Dr. Google. I know I have to be a rock for my mom and she can't afford to see me down or being a panicked wreck. I just freaked since I saw only a few things could cause that low score. Nonetheless I won't ever not be there for her whether we get good or bad news so I might as well be as positive as I possibly can.
MountainMia- Wow thanks for that story. It's so true that when we see any tests off and and you have a history with BC you automatically connect the two and think of the worst. I have faith and but most of all I see hope in so many amazing women here.
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Happy, I am late posting. You might want to search this discussion board for posts about detecting ILC bone mets. They often show as sclerotic. They can be tricky to detect on scans since sometimes they are not very metabolically active. Are you being seen at a major cancer center where the radiologists who read the scans will have lots of expertise? PM me if you have trouble finding the info.
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bookworm, not everyone's tumor markers go up during metastatic spread so I would just take that as 1 piece of the information. My inclination would probably be to check again and try for an MRI this time because each imaging modality can see different things and altogether they might give better picture. I wouldn't freak but I wouldn't ignore either. Hth
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Ladies, I am back from an MRI of the pelvis because the pain has been going on for a while now. Can any of you interpret the following:
15 mm markedly T1 and T2 hypointense ovoid focus within the posterior left iliac bone is in keeping with a bone island.
I don't know what this means.
Thank you so much!
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Reads like a benign bone island. Lots of people have then and they don't turn cancerous. They typically don't cause pain, does the report cute other degenerative changes?
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Thank you, Sondra. No other changes mentioned in the report. I do have pain though. There are SE of letrozole that are not on the common list and it may be one of them. Not sure what to say. I will be waiting for Doctor's office to get back to me. Thank you.
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moth,
thanks for responding. I did email my Onco last Monday to see what we can do moving forward, but he never responded. I have had a few issues with him brushing off things so I am going to see another oncologist on Wednesday to get a second opinion. I never did that when first diagnosed. This doctor I have is okay, but is seemed that as soon as I finished treatment he decided to back off and he said the TM did not go up so nothing to worry over. He relies heavily on TM. I hope you are doing well and once again thank you for taking the time to respond.0 -
Good Morning all! I appreciate all ladies fighting here, i pray for well being of everyone here.
Quickly moving on to my History, I was diagnosed TNBC stage 3 ,5 years back. I am currently not on any medicine. But from past 20-25 days i have startes coughing. Cough is usually dry or with very little mucus. I have pain all over my body and also i have lost 1.2KGs of weight in past 28 days (exactly). I feel like i have no energy . Cough is not continuos, it is ocassional.Cough is from past 25 days. Because of pandemic hospitals are closed, Is it Normal to lose that much weight?? . I am getting terrified after all.Kindly help me, What should i do?
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hello siddhivinayak, I think you should make an appointment to see your doctor and get an xray or other chest imaging. Surely some hospitals or clinics are open somewhere? You should probably get a covid test too as dry cough can be a covid symptom . I would not wait on this.
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sidd, I agree with moth. You REALLY need to see a doctor or at least a nurse. That is way too long to have a cough. Your weight loss is also concerning. Do you have a clinic that you could visit? Let us know when you get in to see someone.
(((hugs)))
Carol
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Sidd, chiming in to agree with the others. Please see a doctor as soon as possible. Your symptoms do sound like they might be related to COVID or some other virus, particularly with the body aches. The weight loss is concerning but perhaps not a huge amount over a month depending on if you are eating normally. Hard to know from your post.
If it helps to know my symptoms, I was originally diagnosed as stage IV with a pleural effusion in my right lung. I did have a dry, non productive cough but it was almost continuous, worsening over time. The cough was worse when I lay down (likely due to the fluid in my lung shifting) - I got to the point that I had to sleep propped up. I also became increasingly short of breath over about a month to the point that I would be gasping if I walked to the end of the driveway. My weight loss was dramatic, about 4 kg in a month, despite eating, as my body was working very hard to breathe.
It seems your cough is different so I am sincerely hoping that you will get clean x-rays and scans but please have it checked out.
Hugs. Pat
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Thnq, @Moth, @Sunshine and @saddieServant. I went on to my primary care clinic today, as it was a personal appointment on my request, Some blood work was done and all reports are normal except i have low platelets and i have neutropenia. So,they prescribed me some meds and called me back within one week.
Yes Saddie i am eating slightly less, I am very lucky that i hve found this website, It had helped me in many ways. I never left empty handed from this site, God bless u all 🙏🙏. I am from India. Namaskar to all.
Moth i read your blog, its really nicely maintained with stickers and all this.Keep it up
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I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad.
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Hi.. I am facing fatigue issues, as i went back to my doctor. I have lost another kgs of weight, so in total i have lost 3 kg(i.e 6.6lbs) weight in 1 month and 15 days, Occasional cough is still there, but my main problem is fatigue, No SOB till now, Slight fever is there, i am not able to get appointment to my onco care, still hanging with my primary care docotor. I have never face this much of tiredness in my life,Thats my latest update . Hoping to get appointment to my onco soon, but the chamces are grim as situation is already deteriorating due to COVID-19.
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siddhivinaya, I am sending you a big hug and I hope you can schedule the appointment with the oncologist soon.
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Hi guys. I'm not sure if this is the right place to post this. My doctor has ordered a CT scan because I've had an occasional deep cough for over a year. In December 2019, I got a very bad case of the flu, with a severe cough. The cough really lingered, even after my other flu symptoms subsided, until I was left with an occasional deep, dry cough. It's usually just one cough at a time. Many days I don't have it at all. I assumed it was a post-viral cough, and I can't remember if I brought it up to a doctor. I am feeling so silly now. I should have brought this up to my oncologist but I was so overwhelmed with everything that has happened to me over the past year, and it just made sense to me that it was caused by the flu.
I brought it up to my GP a month ago because it just isn't going away, and she ordered an X-ray, which was normal. My oncologist only just now got the results of it and called me to set up a CT scan. The scan isn't scheduled yet. Over this past year, I dealt with nausea and fatigue as soon as they started me on ovarian suppression, and I started feeling much better on my current regiment of just toremifene (a drug like tamoxifen).
I am so anxious and will not be able to relax until I know the results of this scan. Everything about my diagnosis was favorable, I just can't believe that this could be mets. Have you known anyone who had a cough like this for a very long time after a flu? Please let me know if this post belongs somewhere else on the board. Thanks.
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I have a cough for several months now but I didn't bring it up to my appointment with MO in February. I read somewhere that nighttime cough that wakes you up maybe mets. I am curious too and I hope someone will write to let us know. I have a feeling that the immune system goes down when we kill the estrogen and the cough may linger for a very long time - this is my theory and I am not a doctor
Good luck with CT scan. When do you get the results?
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Hi Orangeflower, this is a good place to post and hopefully others will chime in soon. There are many things that can lead to a cough but it’s good that your MO is being thorough. I was diagnosed with mets as a result of a cough but it was a dry cough that was constant and persistent. It also showed up after a bout of the flu interestingly and simply would not resolve but the frequency sent me to my GP within about four weeks. An X-ray showed some fluid in my right lung. He ordered a CT and by the time I had it there was a LOT of fluid in my lung and I was very short of breath.Biopsy confirmed a malignant pleural effusion.
Lily, I think what you are referring to is not more coughing at night but rather increased coughing when you lie down. That was definitely the case for me. I had to prop myself up in bed in order to get any sleep as once I lay down the coughing was unrelenting. I suspect the shifting fluid in my lung caused irritation.
I sincerely hope the CT comes back clear and that others with lung nodules will be able to reassure you. I know it’s difficult not to worry so sending a virtual hug.
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fwiw, my cough which turned out to bea huge met was not bad enough to keep me up at night or wake me up. It was just annoying during the day - & even then, not bad enough that I couldn't function. I was in nursing school & doing a clinical rotation at a hospital with it - they would have freaked if I were constantly coughing, kwim? I wasn't - it was just that it was always a bit there.
I would not rely on that criteria alone. And really, a lingering cough should be checked out because it could be other things - asthma, allergies, other respiratory problems. Don't ignore symptoms, my friends
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Hi again.
Quick question ladies!
My mom has had nothing but progression- and Im wondering if it is common practice to biopsy all sites?
Original BC was hormone + HER2 -
Biospy from pelvic mass changed to HER2 +
Now liver is raging and im only going to assume it might have mutated again given that her first 2 lines have failed in short order!!
Looking for some hope stories and sending my prayers to you~
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