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

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.

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

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

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.

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.

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.

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

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.

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!!

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.

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.

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.

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

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?

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.