If you are not Stage IV but have questions, you may post here
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Concerned- I was dx with IDC on Feb 3 2017. Radiologist/ biopsy thought 6-8 mm. Had BMX on March 27th with senintal node biopsy. Path showed tumor 3 cm's and not less than 1 cm which was thought. Sentinal nodes showed micromets in 2 of 4 nodes. Met with MO and he ordered Onoctype. Voiced my concerns about axillary nodes and my surgeon agreed to go back in and do ALND on April 17. He took out 14 additional nodes and 2 of the 14 were fully positive! Even more so than the senintal nodes which were only micromets. So all surprises along the way. MO ordered chest and pelvic CT. Had chest CT this past Monday and am having pelvic CT this coming Friday. In the meantime, my MO calls me yesterday and says Oncotype is back (which was ordered before we had the additional nodes so I have 4 involved now) and my Oncotype score is just a 3 . Only good thing I've heard since this started. I'm still having chemo as this would only apply for 1-3 nodes he said but even with the micromets in 2 he's not chancing it and I'll have the chemo which I am fine with and the hormone treatment which he said will be what will probably work best. So he said witt the 3 recurrance score he was not too concerned about the CAT scans. So he calls me today with the chest CT results. He said lungs clear but there are some other things that came up that I have to have looked at. A node on my Thyroid ( I understand this could be common so not worried), an adrenal node mass that he wants me to have an MRI for (again could be common) and a mass in my right diaphragm that he said doesn't look like cancer but it could be scar tissue or something. He said he doesn't think any of these 3 things is related to my breast cancer at all. My tumor markers all within normal even low ranges- Cancer Antigen 27-29 is a 21 U/ml and my CEA is 0.5 mg/ml. Could the adrenal and diaphragm be a mestasis without it being anywhere else and my bloodwork being pristine and my Oncotype a 3 ?? I am freaking out that I could go to Stage 4 when I haven't even begun to fight this yet. I start chemo next week. I know noone has the answers but what do you think? I think I actually reached my lowest point today which I didn't think was possible after being so low finding out about the two positive nodes from second surgery. Any thoughts would be so appreaciated.
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Leesa, It's good that you're having both chest & pelvis CTs to hopefully ease your mind after the surprises in your pathology, which would throw anyone for a few days. But mets to adrenal gland or node or diaphragm would be extremely uncommon. And that's interesting that nodes from your ALND had more bc than sentinel node(s) did. It sounds like they were really doing their job and catching those traveling bc cells, probably preventing them from going any further. Also the fact that your CA27-29 and CEA are within normal range is excellent news. And the low point is also pretty normal -- kind of a letdown of emotions after being so strong from Feb. 3 until now. But I honestly am not reading anything especially concerning into what was seen on your chest CT, and it doesn't sound like your onc is either. Hugs, and hang in there. And let us know how the CT of the pelvis goes. Deanna
PS ~ I'm surprised they didn't do both CTs at the same time, since they're both very quick.
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Thanks for your input Deanna. Yes the ALND results were shocking to my surgeon, oncologist and to me. They said extremely rare for sentinal to be just micromets and axillary to be fully positive. That's why every test result now is causing extreme anxiety. When the Oncotype came back I thought things were on the upswing. And yes I totally agree about the pelvic CAT scan should've been done st the same time. The tech said it would've taken like 2 extra minutes to do the pelvic. But that was some insurance company representative denying it saying it was unnecessary or just being difficult not realizing he just cost them more money as it was appealed and approved right away. After about the two hundred grand they've laid out already why deny one test.0
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Wondering if anyone has had a biopsy of their skull for possible met? My MRI shows a lesion in the superior frontal bone. I've been having headaches and dizziness. My oncologist says its a difficult place to biopsy. I'm not even sure I want to think about what it's like, but curious if anyone has had one done, and how bad was it? This area could be a vessel island. Oncologist is sending me to a neurosurgeon. This area has been seen on MRI twice in the past year. Thanks in advance.
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gargengirl09, I think a referral to both a neurosurgeon and neuro-oncologist are in order. With brain mets, or possible brain mets, it's best to have specialists on board. I've never had a biopsy for a skull met, as my only met was in my brain. Others with bone mets may be able to chime in on the possibility of a biopsy there.
Best wishes to you.
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hi everyone. I'm posting here for my mom. She's almost 6 years NED from a stage 3 diagnosis back in 2011. Double mastectomy, chemo, & she's been stable on armidex since....
This last week her onc told her that her tumor markers were elevated 10 points. (Baseline is 10,11...number was at 21) so still normal but raised. Her WBC was also elevated to 10k. He scheduled a bone scan and PET for this coming Tuesday...please give me some insight on TMs! I'm trying to figure out if this can be anything but the cancer coming back...scared!
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Hopepraylove,
Tumor markers are so variable from person to person. Without a lot of results to see if there is a trend, it would be hard to know the significance of your Mom's numbers. The elevated WBC would be more indicative of infection, though 10 is not super high. The determining test will be the PET scan. Is she having pain anywhere? My MO looks at things in this order: 1) how do you feel? 2) PET scan results, and 3) tumor markers. I think her Doc is just being very cautious here. Try to proceed as normally as possible while you wait for the scan results. The period of "scanxiety" is the hardest part. I'm betting on a normal scan! Best, MJH
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Thanks, Goodie16!
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thank you for your response. I very much appreciate all input.
She has normal joint pain from the armedix she's been on for the last 5 years. Every day something hurts-knees, hips,fingers, toes. I asked her if she was feeling anything different and she says no, just the normal joint pain she's been feeling. So who knows...scanixety is a total real thing!! Feeling all types of worried and scared. Her scan is on Tuesday so we'll be praying hard til then
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Hi all, I am one month out from my last chemo and still have bone and muscle soreness all over which doesn't seem getting better or worse. This week I start having the same kind of dizziness I had when I was on AC chemo and also a sharp pain come and go at one spot of my head...I know they are probably all caused by chemo and the lupron I am one. But I am still very worried I have some kind of mets.
Thank you for reading my post!
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Stephilosph- I think in your shoes, I would: 1) give it more time, and 2) report your symptoms to your Onc. nurse or MO.
Lots of weird zaps and zings can occur around the chemo! Best, MJH
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I agree with the poster. If not reported, tell your onc. Try pain relievers for the headache. Extra fluids for the dizziness. If you notice vision issues, balance problems or sudden muscle weakness, call an ambulance. It is easy to panic long after treatment is over but good to keep onc apprised of your symptoms. I will say headaches are not typically a symptom of brain mets.
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steph, it can take several months for the SEs from chemo to slowly dissipate, and your body is going to continue to react to the loss of estrogen the lupron is causing. Other than a severe pain, or similar emergency, a good rule of thumb is to give any new symptom 3 weeks to resolve on its own. Most will within that time. If something is still an issue after 3 weeks, report it to your onc.
It's also very natural to worry about every little twinge following active tx for early stage bc. But try to remember that you had aches and pains prior to bc that had absolutely nothing to do with bc, and you will continue to have them.
Good luck, and keep us posted.
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My CA 27.29 last week dropped from the highest 21 during chemo to now 15, so I really think all those are just SEs from chemo. Thank you ladies for all your replies!
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hi. Liver question here. During chemo (12/15-4/16) my ALP was pretty steady, high 40's low 50's. Frankly, I never paid attention to it. Saw my MO yesterday and she wanted to run a blood test to recheck it along with a GGT. She said it was a little high but she wasn't too concerned but likes to be proactive. I come home and check my e-record and see that since June of last yr this thing has a steadily been rising. Side note: I had rads in June when it started going up. It's 128 now. Not super high but the steady increase has me freaked out. This is a bad signs for mets isn't it? If it was one oddball high number that'd be something else. What do I hope for here hope here, fatty liver? So scared all over again, constantly. :,
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PezGal, Could be fatty liver, cirrhosis, the rads and/or any medication that you are taking. Right off the top of my head I don't know if the #s you quoted are higher than the allowable. If they are not, I wouldn't worry about it at all.
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Thanks for replying cive. Reassurance feel nice. I'm just worried about the upward trend. My bilirubin and triglycerides have been going up too. My husband tells me to not worry till there's a reason to worry. Good advice, but I think people that don't have cancer don't understand the mental side effects and how every bump, pain, and "upward trend is super stressful.
Edited to add: GGT came back normal. So I guess this is a BONE questions now.... Any bone mets folks have the ALP rise an an indication? Rise to what number?
Thanks,
lisa
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I'm over 60 and have had degenerative changes in my lower back even before bc. During chemo I was much less active and the pain pretty much went away. But especially since ending Herceptin last Nov., I've been a lot more active, and theback pain has come back with a vengence. I have pain now in my lower back which feels like it's in the bone, much lower than what's from the bulging disks.
My questions: Do bone mets hurt constantly, or just at night? (this pain started just at night, waking me up, but has been constant now for the past three weeks) Also, do all bone mets show up on MRI? I had an MRI (through another, non-cancer doc who knows about my bc) two months ago that did not show mets (just worse disk stuff, nothing at all abnormal as low down as where the pain is). I dread contacting my oncologist yet again for something that is probably nothing to do with bc, even though he said call if something goes on for more than two months...
Thank you in advance for your advice.
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Hi Tessu, so sorry you are feeling that pain. An MRI would definitely show bone mets so if nothing in that area showed up just two months ago, it is very unlikely that they would be there now and large enough to cause the pain you are feeling. It seems far more likely that you are having referred pain from your bulging disc.
Hoping this helps a little.
Love n hugs. Chrissy
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tessu, to answer your question, bone mets can hurt anytime, depending on where they are and if nerves are involved. For many of us, the pain is often very strong aching or burning, made worse by activity or overdoing. But any pain that awakens you at night needs to be investigated.
Where I may differ a bit with Chrissy on your MRI, is that if a radiologist reading your MRI is not trained to recognize bone mets and is not looking for them specifically, I think something small could possibly be missed. You said your MRI was done for an entirely different reason, and this is why I might ask your onc to have your MRI re-read by whomever he uses specifically where you are experiencing pain now -- just to be sure. Also the "gold standard" for diagnosing bone mets is a PET scan. So if your pain doesn't improve with things like heat and OTC meds, I would probably ask for a PET scan if only for peace of mind going forward.
Also two months is a significant window if you're in serious pain. In the US, the traditional rule of thumb is 3 weeks.
Good luck, and please keep us posted. Deanna
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Thank you, Chrissy and Deanna. I'll give things another week (I have a physical therapy appointment next Tues for this) but if the pain doesn't settle, asking for another reading of the MRI would be an easy first step. I thought all radiologists knew how to look for bone mets! I know my MRI can be sent to the hospital radiologists via internet, because that's what was done with my mammogram and ultrasound when I found my lump (also my biopsy tissue was sent --- the private pathologist couldn't identify the tumor as breast tissue because all the cells were dividing and looked so weird -- luckily the hospital path had special chemical stains for breast tissue ID). I'm not sure whether PET scans are available at the local hospital where I've gotten treatment, but I can ask.
Thank you both again for your help. I wish I could wave a magic wand and make yours and everybody else's stupid cancer just vanish. I've been off/on so scared without any definite signs of spread, I cannot imagine what you stage 4 women are going through, and I feel a little ashamed making a big deal over "just pain" (((((hugs)))))
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Tessu, pain is usually a good way to monitor our own bodies so in a way it's a good thing for us.
Having fear of progression is very normal but how we deal with that fear is what makes the difference. For those who have already progressed, we know that we just need to do what we need to do.
Please let us know how you get on and never apologize for asking questions......it is how we all learn.
Love n hugs. Chrissy
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PezGal, I have significant bone mets, and my ALP has never been elevated. Combined with an elevated bilirubin, one would think about the liver. The GGT can be a little more specific for gallbladder and bile duct. As stated before, if these results are within the normal range(should be on your lab report following result), I would just keep a watch on them. What about your AST and ALT levels? These are enzymes that rise with cellular damage to liver. There are several viruses that can cause elevated liver function tests as well. The most obvious being hepatitis,but also Epstein Barr(mono) and CMV. If you are still concerned, talk to your MO. Ask if you should have a hepatitis panel drawn. This could just be a passing thing. Have you taken a lot of acetaminophen? As far as the triglyceride, were you fasting? Triglyceride is elevated if drawn in close proximity to eating a meal. Again, is it within the normal range? Hope this helps! Best. MJH
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Tessu - you are not alone. I am going through this exact same thing. I've been feeling great the last few years, always kept up on my scans and appointments. Fast forward to 2 months ago and I started feeling numbness in my toes.. progressively came up both of my legs. An MRI last week showed a lesion on my T10 that is highly suspicious according to the radiologist. PET and brain MRI scheduled for next week. The ladies here were incredibly comfortingly and supportive when I went through this crap years ago and I have no doubt they will be again, and for you, should you need them. I wish you all the best.
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I was diagnosed back in March, I had a biopsy of the tumor and of lymph node in my arm pit. So I knew I had spread to at least there. I had a strong feeling I needed a Pet scan after MRI showed cancer was throughout my breast. I had to switch drs to get that ordered. My scan showed multiple node active under my chest muscle and next to my airway under my breast bone, as well a tiny spot on my Lung. The Doc said she is more worried about the Lymph node then my lung so I am getting another biopsy next week.I was told I would be stage 4 if those nodes are positive as it is considered distant spread.
Has anyone else had spread in lymph nodes other than arm pit and not to other organs? What was your treatment//experience?
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Hi. So I'm right now undergoing the "red devil"... one more cycle before an 8 week weekly cycle of I don't remember what's next. My tumor is about 2 inches big and within my duct. I'm not looking for any sort of firm answers but all I keep getting going into the oncologist is nothing. No answers. They don't know what stage (thinking IV)and quite frankly I don't blame them for not giving me survival odds yet. I'm only 37.Surgery has to be done first so see how many lymph nodes exactly. Surgery should be done, according to my calculations, end of July, early August.
What do you all think? I'm pretty sure it's a stage 4. My grade is at 3. I know its in my lymph nodes and last PET there was no movement to my organs but have had a bad cough for about a week where I'm leaking urine.
I'm scared to death right now...
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JK1979-Clearly you need more information here. You deserve to have your MO(medical oncologist) outline your treatment plan and explain things to you so that you are clear. Ask! Have someone write it down for you.
I am thinking that they are wanting to shrink that damn tumor before doing the surgery. This is standard practice with larger tumors.They will stage the cancer after they do the surgery. it will depend upon tumor size, grade, and node involvement. I see that the biopsy must have shown Grade 3.
THERE IS NO REASON TO THINK THAT YOU ARE STAGE IV! Your PET scan proves it! A bad cough that is making you wet your pants is most likely just that. When I get a cold, my cough can get so severe that I have to wear Depends!
They are going to treat you very aggressively here in order to avoid Stage IV later. You have to take survival odds with a grain of salt. It varies so much between individuals. You are also very vulnerable right now and it's very easy to project what "might" happen in the future. Take it one section at at time. Easy to say, but it's a skill that can be learned.
Sending powerful healing thoughts and love, MJH
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I'm a stage 2B TNBC three months out before my five-year mark. But my friend (metaplastic, stage 3C) was just diagnosed metastatic to brain with a big tumor. She'll have surgery next week (not sure what kind), then some radiation follow up. The surgeon said it is just the one, big tumor. Does anyone know whether a SINGLE metastatic brain tumor is sometimes cureable?
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I'm so sorry to hear about your friend's diagnosis. I can empathize with her as I have been through a similar experience myself.
To answer your question, once you are Stage 4, the cancer is not curable. This does not mean she cannot have a decent life BUT it is important to know it won't be cured. She will be treated for cancer for the rest of her life.
I know this is scary to hear, especially since she is facing the unknown. How she does will depend on different things. Are there any other mets from the neck down, if not, she could recover and live pretty normally. She will likely be given drugs to control the cancer even if she becomes cancer free after the surgery and or radiation. If she is able to, she should consider some exercise before, during and after. This can help burn off stress and improve her fatigue. It also helps aid recovery from surgery and radiation.
I don't mean to infer she should not expect a good life, surgery and radiation can offer a lot of hope for a fairly normal life. She should do her best to avoid googling too much initially. This site is quite helpful ad she won't land in brain cancer sites. Brain cancer may have some similar treatments but it is different and much scarier.
I was diagnosed last summer with a brain met. I went through surgery, whole brain radiation. I have not had any other met since it was removed. It does take a long time to recover BUT I feel better now than I have in 2 years. I am at the gym at least 5 days a week. I still have my drugs every three weeks but they do not trouble me. I hope to continue a long time. If you have questions, feel free to message me.
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Thank you, Mara. I appreciate it. We went through our initial breadt cancer diagnoses three years apart. We both did chemo, radiation, BMX, and reconstruction. She was later stage and also Metaplastic in addition to triple negative, ie she's an even rarer form. She is staying away from Google. I'm doing some research for her. Thanks again
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