If you are not Stage IV but have questions, you may post here
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Hi: I have a question regarding a swollen node/bump under the collarbone. I noticed 2-3 weeks ago that on one side under the collarbone I have a lump/swell/bump that can be felt. Feels like a small round bone sticking out, it is hard as a bone but it is new and not symmetrical with the other side. I am thin and can be felt easily. My question is how do cancerous lymph nodes feel like?
I'm worried.... also tomorrow I am going for follow up US for the thyroid nodule.
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Hi Lilly a lump on or near your collar bone should be seen by your doctor. Any lumps and bumps that are new or unusual should be investigated, once you have had a cancer diagnosis. There are lots of nodes in this area. It maybe nothing but best to have your doctor check it. Hopefully you mentioned it at your scan.best wishes to yiou
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Thank you helenlouise. I do have scheduled my 6 month appointment in 2 weeks and I will mention to MO for sure but until then, I am wondering what is a feeling of a swollen lymph node on the chest. Hard, soft, rubery, feels like bone?
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Lillyishere, I had a distant superclavical lymph node that metastatic cancer. It was hard.
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Thank you Simone. Did you find the swollen node yourself or the doctor was able to see/feel it? Mine looks and feels like a bone sticking out.
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I found the lump myself. Hopefully yours is something else. Try not to think the worse case and good luck with your appointment.
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Lilly - I found a lump just below my collar bone myself exactly two years after my bilateral mastectomy. Yes it felt hard. Yes, my MO could see & feel it and first said they'd order a CT - but I said NO, you'll do an Ultrasound before I leave the building. Turned out to be a "local recurrence" in a lymph node. But the signature had changed from DCIS to IDC Stage III, and it was HER2+, so I had to go through neo-adjuvant chemo, then ALND surgery and then RADS and then Herceptin for the rest of a year. I do have mild lymphadema and some neuropathy in my feet & fingers from the chemo - but luckily I have been NED since that treatment ended in 2015.
Did you have a chance to see your doc yet? Fingers crossed for you & sending good thoughts.
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minustwo, I had a similar experience with the lump in my armpit. I made an appointment with my PCP and was all set to argue and insist on an ultrasound for the lump. Turns out that she was in agreement and I stood at the receptionist's counter while they called scheduling and INSISTED that I get in the next day.
US was followed by a biopsy (that took a few weeks to get scheduled) and then the Stage IV diagnosis.
Being your own advocate is the best thing you can do.
Lilly, all the best to you! I hope it's "nothing"
(((hugs)))
Carol
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Hi Ladies, I came to report back. Today I met MO and asked him about the lump, he checked it and said not to worry! I also had a conversation with him regarding my numbing soles of the feet, forgetting words, etc. and he suggested changing to tamoxifen or another type of AI. Took me a year and a half to feel slightly better with letrozole's SE and I better stay with the devil I know that the one I don't know
I want to thank you again for all your suggestions and support.
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Great news Lillyishere! Thanks for posting an update.
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Ladies, I am back carrying fear with me! I had sharp abdominal pain on Saturday, low-grade fever through Sunday, ended up in Urgent Care on Monday and my PCP told me to go to ER on Tuesday. After a long wait for several hours in ER, I left and came home. I am scheduled for a CT scan tomorrow morning. I am nervous. I have had upper abdominal pain for a while now especially on the right side under the ribs, lower legs are kind of swollen and I have some indigestion after eating. The first thought of the PCP was appandesitis but it doesn't seem to hurt anymore. My liver tests are normal but I feel a stitch where the liver is located. Do you think may be signs of something cooking? Any experience? I am getting very nervous.
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Lilly - Hoping it is nothing serious and reovers on its own. My left leg recently swelled up, no new pains anywhere. PA seemed unconcerned and thought I should see if it resolved on its own. Did not think it was a clot since I take Eliquis. LE did not think it was related to the cancer based on medical history. Compression stocking and elevation seems to help. But I do feel new pains now and then, usually do not persist, but often return. Want to blame the cancer, and get frustrated not knowing if it is or if it uis something else, Or maybe even just getting older and with the heat and smoke not getting out as much. Need to get to the gym more. Was stretching out at home very regularly, then went into a major slump.
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Ladies, I got the results today, and nothing to worry about. Made me so happy and sad about how anxious we get after cancer diagnose. It has changed our bodies and mind.
BlueGirlRedState, have you tried to massage it from feet up?
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Lilly - Sometimes I try massage or light "brushing" upwards. Like so many things, I need to make it a habit.
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I am 11 years NED. I recently had my routine lab work done at my oncologist office and it was noted that my liver tests, ALP and ALT, were higher than normal. That lab work was drawn on August 25. I saw my primary care doctor yesterday, September 8, and he wanted a repeat of my labs and now all three are higher than normal, ALP, AST, and ALT. They were only mildly elevated however they are trending upward. My bilirubin and albumin were normal. Naturally I am thinking liver Mets, and praying that I am wrong. I know that medication can cause fluctuations in these levels. However, over the last 11 years I’ve only had one of these increase slightly and it was my ALP. I have been on anastrozole for 11 years as well.
I have been on anastrozole for 11 years as well, and it never caused my labs to go wonky. I have no other symptoms. I need someone to talk me off this ledge. Can anyone chime in on increased liver lab results?I really appreciate any help you can provide.
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Any new herbs, alcohol, or supplements, Rocket? Do you have any upper right quadrant pain if you press under your ribs or on your side? Maybe ask for an ultrasound or CT for peace of mind?
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The only thing I can even remotely fathom that could increase it would be Doxepin which I started two weeks prior to labwork. I was only taking a very little bit .6 ml. My doctor prescribed it for sleep. I was just taking that tiny dose at night before bed. It is metabolized in the liver, so I suppose it is possible. I had taken that medication a few years back and I don’t remember it ever increasing my liver function tests. I have not stopped or started taking anything new other than that one drug.
My doctor was supposed to call me on Friday with what we are going to do next regarding the increase in my labs. They never called. I guarantee they will be getting a call from me on Monday morning.
I never drink alcohol and never have. The only thing I drink is water. I keep myself hydrated and I exercise.
I’m not finding a lot on the web for all three of those values being increased. I have been vaccinated against hepatitis A and B. And I was tested for hep C months ago and it was normal. I am just praying it’s the medication. I have stopped taking it and will insist that they test my blood again. The waiting is what is hard. Thank you for responding
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I neglected to mention that I have no abdominal pain
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I hope your next text results come back lower, I know how horrible the anxiety can be. I’m December my ALT and AST were elevated (53 and 65). I had them retested (with a full liver specific panel) a month later and they were both 17. I was so worried the whole month in between and it ruined my Christmas. I was sick about 3 weeks before my December blood work (thought I had covid but tested negative) which I guess caused the problem. Have you been sick recently? Hope all goes well for you.
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About 6 weeks prior to the lab tests I had food poisoning and unreal diarrhea. Then about two weeks after that I began taking the Doxepin. Then I had the first set of labs which showed the elevated alk phos and ALT. After a couple of weeks labs were repeated and my levels of ALT and AST increased. The alk phos went down two points but still too high.
This stuff scares me! Why couldn’t the doctor or his nurse just call me back with a plan? It drives me crazy!
Thanks for sharing your experience with me.
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went thru two lifetime worth of beatings a few yrs ago. Asked for scan due to zingers in my chest area. Got a MRI of lumbar spine done Thursday. MrI report mentions stag 4 intial work up twice. I can recite every word in the finding section. It says benign, no mention of mass or suspicious or follow up. Degenerative disc disease multiple times. . The last line of report is no evidence of malignancy. Meeting with Onco on Monday. Hope and pray I don't hear stage4. I am freaking out.
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Hi Ladies - I'm here to ask about liver mets. I'm having dull pain on my right upper side of abdomen for the last 3 days. It doesn't hurt to press on it and can hurt either standing or sitting. It comes and goes. I don't believe its swollen. I'm not seeing a pattern of pain based on eating. Of course this is happening in btwn jobs, although I do have cobra for 60 days.
Can you share your experiences with liver mets pain?
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Mimi--I just saw your post and no recent update from you. I hope you didn't hear 'those words' at your meeting with the MO. Hugs.
jenjenl--I don't have liver mets but I did have similar pains and was sent for scans. They didn't find anything and never could say what caused the pain, which eventually went away. I hope someone will see your post who can offer more info, and good luck to you.
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Hi Ladies,
Thank you so much for creating this forum. Here is some background (not sure what will show below), ERPR + Her2- both boobs ILC stage 3a dmx did not get clear margins, IDC stage 1 right side. I had all the normal treatments and now I’m on arimidex and verzenio.
I had a bone scan last week which doc initially said it came back fine. Met with him yesterday and he said there was some inflammation in the area that they didn’t get clear margins. He is ordering a CT scan to be done in 6 months. He is also going to start pulling tumor markers.
Does anyone have a crystal ball? 😅 one one and I’m grateful that he is so proactive, on the other I wish I had more info. I am active duty and can retire in July 2023. I haven’t been planning on retiring yet, but if I’m stage 4…I’ll be forced to. I just want to know how to plan.
Can anyone relate? Does anyone have any insights? Why would he order tumor markers? Last time I asked him about tumor markers he said they were unnecessary and unreliable. (I’m glad he did order them! Just wondering why.
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mekrmurf, I am de novo Stage IV ILC. It can be such a sneaky cancer. I think doing tumor markers as a baseline is a good idea. That way if they check them again, you can see what’s going on. They work for some and not for others. They do work for me. On a side note, PET and CT scans would have you believe I have no cancer anywhere, when it’s actually throughout all bone marrow and bones from skull to femurs and stomach. MRI is the only thing that shows the cancer in my spine. Endoscopy the only thing that shows it in my stomach. This is not meant to scare but for your knowledge. Please let us know what you decide.
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Thanks for your insights Kbl. I left the appointment happy and feeling good, so happy I have a proactive oncologist, then at about 8 pm I started to replay our conversations and got worried. In the end, I’ve accepted I need to be happy for each day I’m given.
We (me and my oncologist) are most worried about the dirty margins. I’m not sure how the spread will happen if it happens. Locally or distant. I’m tender in the area of the tumor (where they didn’t get clear margins), but that could be from rads. It’s hard to tell if something has changed or is lumpy because everything is lumpy there 🤣 everything just feels different, so I do t know what is “normal” anymore. I just want that crystal ball. Do I have 1 year or 20?
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I totally understand where you’re coming from. It’s something, sadly, we think about every day, but I am feeling decent, so I accept each day I’m given with appreciation and even more so when I’m feeling okay. I’m sorry you’re having pain. Each pain brings us to that place we don’t want to be in our heads. After I started having the symptoms in my stomach, it took six months before we figured out what it was. The cancer has never been found in my breast, so I haven’t had any surgery.
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Hi Kbl, what wer the symptoms your were having in your stomach?
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anx789, hi! In October of 2018, I started feeling full after just a few bites. I lost 17 pounds without trying in a matter of months. I went below my pre pregnancy weight of 30 years ago. I was nauseous every time I put something in my mouth. Thankfully, my primary told me to have an endoscopy. They found the cancer in biopsies in three parts of my stomach, the angularis, antrum, and body. To note, when the gastro took the biopsies, he literally said my stomach looked normal. He was completely shocked it came back cancer. Mine was a missed diagnosis from 2013, so I had six years with no meds. I was on Ibrance but switched to Xeloda when the not being able to eat and weight loss started again. I've been on it since September. Just had my yearly endoscopy. They only find the cancer in the stomach body right now. It's stable in my whole spine, including bone marrow. I’m still loaded with it there.
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quick update - They performed a chest, abdomen and pelvis CT scan which came back normal. To be safe, they are ordering a bone scan too. Would a CT be able to see lesions?
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