Petscan shows improvement but Ca 27-29 keeps on rising

My daughter was diagnosed with stage III breast cancer at the age of 26. She had a mastectomy, chemo therapy and radiation. Two years later, the cancer metastasized to her bones. Her oncologist started her ibrance, Fasodex and Xgeva which seemed to be the treatment recommended by several second opinion oncologists.

Her last petscan showed no new cancer, some of the lesions have disappeared, some have shrunk and a couple of them did not change.

Her doctor is baffled at the CA 27-29 test results . They keep rising. She is currently at 440, 100 points up from last month. The rise in the blood work was our first clue at the fact something was wrong . She had her recurrence that was confirmed by a petscan in March of 2017. Did anybody have a similar experience? Thank you

[Hidden]

Glad her treatment regime seems to be working. Although not on the same treatment I, too, had weird marker changes. Almost the whole time I was On Xeloda my markers went up and the liver metastasis shrunk according to the CT scans. Then at my next CT scan the liver met had grown again - and the markers had gone down!! So now on new meds. It seems that markers are not an entirely foolproof method of reading progression - or not - and my oncologist does not take them at face value at all now. Each individual seems to react differently and have seen a number of posts on this site suggesting that they don't seem to be too reliable on their own.

Good luck with ongoing good results

[Kats2]

saliahma,

I have bone mets. I just had 3 MRIs of my entire skeleton. I also had an ultrasound of my gallbladder, liver, pancreas, spleen and kidneys. Nothing positive showed up in my organs, My bone mets show diffuse distribution of cancer mets. Lots of them!

I’ll see if my tumor markers go down at next week’s doctor’s appointment. They’ve been steadily rising on Afinitor and Aromasin. IIbance with Letrozole will be next if no improvement in markers.

But I’ve been told that tumor markers don’t tell the whole picture. You need 3 months of rising markers before a change in meds occurs. The fact that the CT scan shows improvement is a good sign.

It may take the tumor markers time to catch up with what’s happening. Some doctors don’t trust tm’s at all anyway and don’t do them. They just do scans.

Good luck to your daughter as she copes with the ups and downs of this disease. It’s not easy.

Encourage her as much as you can. She needs lots of moral support. Maybe talking to a counselor would help, seeing as she’s very young to be dealing with a serious thing like Breast Cancer.

I’ll keep her in my prayers. Best wishes to all of you! Kats2

[Hidden in reply to Kats2]

Thank you Kats2. Her numbers have been rising for the last 4 months. She is having a new pain in her back. The doctor is requesting an MRI for her back. I am hoping that will give us a clearer picture. She and her husband are seeing a therapist with a specialty in oncology so am I. He has been very helpful in teaching us how to deal with the present vs the unknown .

Your bone mets seem very similar to my daughter’s. I wish you the best luck at the next scan. I am always comforted that there is more than one option available to treat the cancer and hope constantly for a cure that is sure to come!

[Ibelong]

This happened to me as well. It wasn't until 7 years past initial treatment of lumpectomy, axillary dissection, chemotherapy and Tamoxifen for 6 years that I had my recurrence. After my recurrence was finally diagnosed one year after having symptoms they couldn't find a cause for I was treated with chemotherapy one that tried to kill me then Xeloda. After the chemo was complete and the scans showed rather remarkable progress. So much so the CT's came back clear. Then every month for 3 months my markers were still being monitored they were still elevated. During this time they went up and came backdown and up again. At 3 months it was decided a scan would be done. It confirmed new bone mets. I under went radiation to my hip and my shoulder. I had lots of pain and my pain management doc was managing it with narcotics. After a few months post radiation the pain subsided and I reduced to almost never the use of my narcotics. I was given a little over a month to feel stronger and then I was put on ibrance, letrozole and Xgeva injection. After a while the Xgeva was hurting and I was taken off once we slowed it and determined it to be the cause of the joint pain. For the duration of being on this we had mixed messages from blood work and scans. Blood work wasn't stable markers were up and down. Scans were not difiinitively showing stabelization or shrinkage. A few possible new spots of uptake were seen but, it was possible it was background noise. They could not determine if they were new lesions. Then after almost 1 year of the Ibrance and letrozole my markers were out of control and liver function deteriorating. We did an early scan. The scan confirmed more mets. This time multiple in the liver and a few more in the bone all the while it showed slower growth on previous bone mets. I was put on chemotherapy Xeloda once again. I have been on it for 4 months now. New scans were just done last week. Blood work last month was significantly improving. I am awaiting the results Nov 1.

Just based on my experience and hearing from other women this is not unusual. Modern medicine and technology when combined with human interpretation is not perfect. There is no 100% accurate way to diagnose and treat breast cancer and its metasis. The patient is key to communication with the doctor and diagnosis. The best thing you and your daughter can do is to be aware of new changes in symptoms or side effects. Keep a journal and talk them over with your doctor as soon as possible. Especially pain with no cause. Do not try t o rationalize it by saying I must have...... when I did..... therefore it's probably okay. The truth is it may be something her doctor needs to known in order to help her. Pain and fever will need to be addressed right away especially while on any chemotherapy.

I hope this if some help to you and your daughter. This is something I learned through the years. I was diagnosed at 36. I just turned 47 and if it weren't for a team effort between myself, doctors, husband, my dad and my mom I might still be in a blizzard of medical jargon, terminology, technology, treatment options, clinical trials etc. wondering which direction was up. I also learned and accepted that my choices no matter how difficult to make were mine and were the right choices to be made for me. Since everyone was involved in then beginning they understand and accept this.

I am glad that you are reaching out for your daughter. A d aughter no matter what always needs her mothers support. As her caretaker you need to know just as much if not more. One thing more as a daughter I do not want to see my mom run herself into the ground and put her life on hold for me. It was important for me to say this delicately to her I didn't want to hurt her. She was spending a great deal of time traveling to be with me and I still see her once a month for lunch and an appointment for the day before she boards the train and takes her 3-4 hour journey back home. It was difficult because I didn't want to hurt her but knew I would. I had to ask her and my father to take time for themselves to enjoy their life. Seeing them tending to me was sometimes overwhelming and worrisome. I did not want them to stop living their life for me. I also worried that she would get her self sick too. (It has happened in the past when she worried about her Aunt, Mom, and brothers.) I always felt I might be robing my parents of the joy of life and embracing life's good moments. Because there was and still is nothing more in this world than I want for myself, to enjoy life. Please take care of yourself so you can continue to be strong for your daughter. A great big hug to you for all you do.

[Epinto in reply to Ibelong]

This is such a heartfelt piece that I had to respond to it. U have gone through do much and seems like u can have gratitude for where u r st this moment. Your selfless feelings got your mom r beautiful and she is lucky to have a daughter that realizes that she should try to take care of herself too! Stay well , I am also stage 4 with bone mets and it is a scary journey indeed. Bless u

[Ibelong in reply to Epinto]

Thank you, Epinto for the sweet message. I hope you are doing well and find time when you feel good from treatment and enjoy some quality time doing what you like. Keep on following your faith it helps so much on this journey. Be well and God bless.

[Hidden in reply to Ibelong]

Thank you Ibelong for sharing your story and your heartfelt advice and thank you Epinto for pointing that out. I am hoping to find a balance and become a supportive mom once we adjust our expectations to the new realities. Your story and the story of all the resilient survivors give me courage and hope. My daughter ‘s cancer is caused by the PALB2 gene . She has a twin sister that also has the gene . She underwent a preventative mastectomy last year. I wish all of us all the luck!!

[Ibelong in reply to Hidden]

I hope your family heals well and can say one day there is no more evidence of disease for the remainder of a happy and healthy lifetime. Please keep us posted and ask any questions you might have. I think the best thing is to do is listen and record either with pen and paper a recorder on cell phone or other devise doctors appointments, diagnosis, symptoms, side effects and all concerns. My mom does that while my husband has a good ear we tend to forget and have her notes. It's a great help. Wishing you and your family all the best.