If you are not Stage IV but have questions, you may post here
Comments
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Hi Lilly,
No bruise or anything visible to naked eye.Touch only.
Are you getting it checked out soon?
It took me awhile to get mine checked because as I said, I told myself it must be necrotic tissue.
They did an u/sound and then seeing something, did biopsies.
Thinking back , they did the sterotactic upside down one, as well as an aspiration type. Hope this makes sense.
Please let us know how you go.
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Hi All,
I posted a couple of days ago about my 5 sclerotic lesions. Thank you to all of you who provided a reply- so helpful!
I had a follow up PET on Thursday. It showed no hypermetabolic activity and no new sites. I am so thankful but also I am so perplexed. I won't meet with my Onc till Tuesday. I have read that sometimes sclerotic (osteoblastic) lesions don't show up on PET scans.
As might be obvious I am one that prefers more information to less
Does anyone have experience with negative metabolic activity still resulting in mets?Thank you all in advance for your insights.
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H2BMe
It seems to be great news...
I get your anxiety here. Let's hope your Onc appt can confirm for you, or you get a confirming scan for peace of mind.
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Thank you Astrid!
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Great news happy2beme...I had 1 sclerotic lesion show up on a CT scan a year ago. After that I had both a MRI and a bone scan with SPECT of the spine. Neither of the follow up scans found any concerns so my doctor did not think it was something to worry about (hope she’s right). I think you should feel good that the PET scan was clear.
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Thank you, Ladies. I have the 6 mo appt with MO in the middle of February.
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Hi All, a couple of days ago I felt a lump on my cancer breast near the breast bone(bet 10-11 o’clock) this is freaking me out. Last week I also had a deep throbbing pain in my lower back close to the spine under the muscle for 3days but went away with Advil. I have no pain in movement so my doctor did a urinalysis that came back ok. I am also dealing with dry throat for a month now, my mind is going the dark side. I’m seeing my onco on Monday, what kind of imaging/test would I expect since I had MX, no reconstruction. My anxiety is up the roof, here we go again 😔 I am 2 years post MX and on Anastrozole
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Anx789, I had a lump on the same location as you that showed up just before BMX, and you know what it was? A lump of fat! Probably you may have the same thing.
I am taking letrozole and I believe I am very sensitive to pains since I have been taking this medication. I have aches and pains that come and go. I had US of my abdomen on Tuesday that didn't show anything suspicious. Also, I have tennis elbow, knee pain, back pain that I never had before letrozole era. I believe most of us complain about these aches and pains because AI does something to our nerves to feel these unusual pains.
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LillyIsHere, thank you, Ihope you’re right but this lump is hard and round just outside my scar line.
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Anx, mine was in the chest area between breasts, slightly closer to the one that had cancer. In case yours is not fat, can it be a scar tissue that has shifted?
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Hi Anx
Your anxiety is understandable. Monday is not too far away. I would think ultra sound first. If suspicious, then a biopsy from lump.
Let us know how you go.
Astrid.
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Hello Ladies,
I think I'm probably being a bit paranoid, but I have some concerns about the pain I've been having in my arm/shoulder joint since my mastectomy last April. Before surgery, I never noticed any pain in that area, but it has gotten progressively worse, especially since completing radiation therapy. In my pre-surgical scans, the CT noted "bone islands" on the head of my humerus, my right hip, and a couple of other spots. A bone scan showed uptake in my spine (T8, T9), sternoclavicular joint, and the humeral head, but said that it is likely degenerative changes. I've never had a Petscan. My oncologist suggested that physical therapy should help with the pain in my arm/shoulder, but after a month, it is not making a difference at all. Although it is probably nothing, I can't help but worry that it is possibly mets to the humeral head. I had positive lymph nodes with lymphatic vascular invasion and extranodal extension, so it is always in my head that cancer may have spread. I've worked with a therapist regarding my fears, and I assume that the chemo, rads, and anastrozole would take care of any cancer cells, but I can't shake them. I'm curious to see if anyone else has experienced similar pain before being diagnosed with mets. Should I insist on a Petscan? Or just have a little more faith?
Cheers,
Sabrina
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Sabrina, I had the same pain and panic as you describe after BMX, cancer side shoulder where lymph nodes were removed. I was in such pain and so worried. MO ordered x-ray that didn't show any problems. I asked another doctor who told me that during the surgery, they rotate the arm in so many directions and that may have caused an injury. I googled, and read that this happens in 30% of cases and can take up to 2 years to resolve. I was lucky that took me 6- 7 months to be back to normal. MO recommended Motrin and warm pads. I didn't follow her directions but you may give it a try and see if it gets better.
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Thank you LillyIsHere! That does make total sense and my pain is on the surgical side. I appreciate your input!
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You may find more input to your concerns if it is posted in the Not diagnosed with recurrence/metastasis but concerned thread. That one gets a lot more visibility than this one tends to get.
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Astrid, what kind of treatment you had on your first recurrence
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Hi Anx,
I had a wide excision on left mastectomy side, followed by radiation and hormonal tx.
I'm hoping the best result for you on Monday.
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Thank you Sondra! I was not aware of that forum. I will post there instead
. I appreciate the information. Have a great day!0 -
I first posted this on "getting pushback from oncologist genomic testing" posting it on other sites hoping to get help. SpecialK had posted an explanation of genetic testing profiles and genomic testing. Come to think of it, I did the OncotypeDx in 2016 which suggested chemo would be helpful. But I think the tumor did not shrink much.
My oncologist is out all week, but I want to be ready with good questions. Has anyone else done a genetic panel like this, checking for over 600 markers? Was it helpful? She wants me to do a genetic profile of of over 600 markers to help determine the next step. Insurance is unlikely to pay, they already denied one 1 1\2 years ago specific to BC (over 20 markers looked for,nothing found), saying it was not relevant to diagnosis or treatment. The Lab says they will work with me/ my insurance if denied, and the maximum if denied would be $500. If the results would truly be helpful, I guess it is worth it, but if is not helpful, it is a lot of money wasted and more discouragement. This is BC #3 for me,and it appears to be spreading into the skin. She thinks each cancer diagnosis is a "new" cancer rather than recurrence because of time interval or location, but admits there is no real way of knowing. She has ordered a PET to see if it picks up anything regular CTs have missed. So far CTs have not found anything in bones or organs. She thinks the treatment for BC#1 and BC#2 were successful, but I am having serious doubts. She thinks the Ibrance/Arimidex for BC#3 is no longer working, and is thinking chemo. What should I ask? I did chemo in 2016 for BC#2. If I have a genetic flaw that keeps making cancer, should I just throw in the towel? Or if the flaw is identified, would it point to a targeted treatment? Yes, I am discouraged. But what should I ask? I used to scour the internet to try and get a better undertanding and write a huge list of questions, but now I just want to scream.
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 ER+ R-axilla. Symptom was a very swollen Right arm. Ibrance and Arimidex. 12/2020, "rash" on right chest wall and fibrotic tissue between neck and shoulder. Punch biopsy showed BC in skin. I had noticed decrease range of motion prior but attributed it to old injury, not working out at gym because of covid, geting older and older.
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Hey gals,
Said I'd let you know my bone scan results and as expected no mets! Phew.
As suspected osteoarthritic party has moved in and brought good friend Bursitis.
Ah well. And in a 2nd pretty good newsday,
My dexa scan result showed slight improvement in bone density. Still osteopenic, but hey, I will take that! Last scan was 2018 so that is impressive work by my body right there!
Hope you all are doing well too.
Xx
Astrid.
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Thank you for letting us know Astrid. Two words "no mets" are for celebration.
Do you have any plan for how to keep bursitis under control?
xoxox
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thankyou Lilly!
Nope...just gonna do the program for O.A I think for bursitis it is jabs!
Ps. Meant to say osteopenic for the dexa. I edited it. 💗🙏
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Good news Astrid! I also have an update, I had my ct scan yesterday and the lump I’m feeling was actually a bone. No recurrence
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yay!!! Great news Anx.
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Hi,
Here’s a question. Did you ever just stop getting your annual PET/CT scan? I am 7 years out and have had a total of about 5 scans in that time. I was late Stage 3 at DX, and feel the need to stop irradiating my body for fear of advancing more quickly to Stage 4. Opinions are all welcome. Thanks.0 -
Congrats on 7 years Capri, If you have had no progression I would definitely raise the option of stopping scans with your doctors. Tell them your thoughts on the matter. You can then work with symptoms only if your comfortable with that. I too fear all the scans will result in some other cancer. good luck to you.
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It is hard to know what to say about scans. I wish there were better monitoring tools for detecting recurrence, new cancers, spread. Monitor your health, maybe keep a log, and if you notice changes, start asking questions. When I asked about PET, my DR was reluctant on more, since there is more radiation than CTs ( I had one in Sept 2019), and Insurance might have refused. I was getting regular CTs. Well my cancer has spread all over the lymph according to the PET this week, nothing in organs found. The only indication was a loss of range of motion, in the arm with the lymphedema. Later I experienced some fibrosis. I had noticed both, but thought I would be referred to a PT. When the rash showed up - off went the alarm bells.
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a couple months ago I woke up in the middle of the night the a sudden sharp pain in my chest (same side as original cancer). I actually considered calling an ambulance because it was that bad. It let up about 2 minutes later. I then felt like a more dull pain. Almost like a pulled muscle but I could figure which muscle or where exactly it was. I figured I must have pulled on something when I rolled over. So I went about my life. It’s now been a couple months and I still have that dull muscle pain thing. It’s never really gone away. I had an X-ray done by my pulmonologist (I have asthma) and it’s clear. The really weird thing is I had a routine colonoscopy yesterday and the pain is a little more prevalent. That seems odd to me. Anyways, has anyone had anything like this? Did I tear something in my mastectomy or could it be something worse? Just wondering if you guys have had anything like this at all. Thanks for your insight. And yes I will tell my oncologist when I see him at the end of the month
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Capri, I actually don't know what to think about annual PET/CTs. The last PET I had with regards to my breast cancer was in 2009 when I was preparing for my reconstruction. I've had a couple CT scans since then for other ailments, but nothing annually. My MO doesn't do scans unless there is a very specific complaint or something wonky shows up in bloodwork that needs to be checked out. I would definitely be cautious about having too many.
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I agree Nancy D. Too many scans are not good. Too much radiation. End up with another cancer whilst tryingto prevent BC!
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