If you are not Stage IV but have questions, you may post here

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!!

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

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.

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.

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.

Question about lung mets. No shortness of breath. I’ve had a pain behind my lung in my back since mastectomy. During massage she pressed on it and I started to cough for a while. Feels like a lump deep in the lung. Don’t want to borrow tomorrow’s troubles but what are signs of lung mets

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)))

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.

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?

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.

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.

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.

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.

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?

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.