How were you monitored for recurrence?

amarantha

Interesting topic. Until my cancer returned I was being monitored with blood tests every six months or so. If it had not returned we would have gone to the stage of just yearly mammograms. Now it is being treated and monitored, blood tests every two weeks, TEP scans every four months, and seeing the oncologist every month or so. My cancer came back two and a half years after I finished chemo and radiation and surgery. I was on Tamoxifen when it returned. The recurrence was to be expected and right on schedule for to the kind I had (IBC) considering its poor clinical reaction to the chemo in the initial treatment (it came back right on schedule, said the statistics I read, not the doctors, who said nothing ). I found it myself, and had to fight for months to be taken seriously. Anyway I finally managed to get it biopsied and diagnosed, and treated, and now - nine months later it is mostly not visible on the PET scan now, although the skin on the left (ex)breast looks increasingly worrisome. In any case we do have to be vigilant for ourselves, but also not let it ruin our ability to enjoy life, and not automatically assume every ache and pain is a new cancer. It does play mind tricks on us ! (A small dose of paxil helps me to thing about other things !)

Kattis894

Yes, thanks for your reply. It comes in waves...some days are great and some not so great...and think it is normal and ok to freak out sometimes...walking on a thin line...yes...

Traveltext

I'm in your boat amarantha, and now three years post treatment. No recurrance of bc, but a year ago I developed a comorbidity, prostate cancer. I agree that we have to be our own advocates with the medical profession, since they are busy people and don't always get it right. I'm impressed with the standard of care you're getting for your IBC recurrence. If you feel like sharing your latest treatment experiences in the IBC Lounge, we'd love you to do so. All the best for your treatment.

Houston2016

Hello everyone,

I'm trying to find a thread to ask my question. Don't know if this is right one. I have a left UMX in 11/16, had chemo, rads finished 01/31/17. i had exams with the OC and BS back in 11/17 and they said to do mammogram. I hesitate bc it is more radiation, that I had an ultrasound and cyst removal from my right breast in 07/17. I was planning to do the mammogram in April this year when I found some swelling on the nodes right breast near the underarm. It's kind of sore their on and off but I thought I was carrying a large heavy diddle bag to work. Now I'm scared it may be Mets. My OC does not want to do any kind of test or scans unless there are symptoms. I also want to add I have,been sleeping late only 5-6 hours in the last 6 months. I don't know if it contribute to the recurrence.

Thanks. Any inputs would be appreciated.

KBeee

You are having symptoms, so mammogram, ultrasound, or MRI are in order. Call your doc to report the swelling. Let us know how it goes. Hoping it is something benign.

Houston2016

I got the mammogram and ultrasound done on the right breast last Monday. Radiologist report said 4 cm mass 7 degree from the nipple but no solid suspected. So I need to follow up in the next 6 months. My swelling near the underarm was pectoral muscle. I planned to ask the BS to remove the mass or do a biopsied. Would like to know if anyone has gone through same thing?

katcar0001

Houston, I would want to know for certain... I would think you should get a biopsy at least.

Houston2016

I planned to meet with BS to discuss a biopsy. Just right after that I started to have aches in the waist area and it kinda spread down to 2 sides of the pelvic. The back of my waist feels like I had muscle aches. My stomach is little full but no cramp, I read that these are symptoms of ovarian or uterine cancer. I'm taking Anastrozol but hadn't had this symptom before. Any one has similar symptoms from AI.

smc123

Thank you ladies for sharing your stories...it is very clear that everyone needs to listen to their body and be their own biggest advocate. My MO only does blood work and check ups every six months. But, a friend's blood work was fine yet she pushed for a PET scan after months of odd shoulder pain only to find out after six years it spread to her bones...now it's treatable but not curable. It really makes me question if the doctors are just not telling us that if there is no detectable cancer at the end of treatment and it does spread by the time it would be detected on a scan it's no longer curable. So, there's little incentive for yearly scans

smc123

 I have not been feeling well and I am waiting for a call back from doctor.  I have had several small lumps over the last two years that my doctor has not been concerned about but I am worried.   I have not had any type of scans in the last two years. I want to insist on some type of scan to put my mind at ease.  Does anyone have a recommendation of the best scan to push for? I have a friend whose recurrence  was finally caught from a PET Scan.

Peregrinelady

Hi smc, I don’t know if this is outdated info or not, but the reason drs. don’t scan early stagers is because supposedly length of survival is no different catching it earlier rather than later. However, there are some doctors who will do scans, if pushed. Good luck in finding out what is making you feel unwell and keep us posted.

Keke713

i see my breast specialist every 6 months. For the first 2 years it was just a routine check up to ask if i have any new concerns, then a quick exam and i went on my way. Then at my 2 year check up a new lump was found. Thankfully it turned out to be scar tissue. After that scare, she decided that we should to do a breast ultrasound at every visit to ease my worries and anxiety. I have a love hate relationship with these ultrasounds bc now here I am 5 years cancer free, and 5 years to the day (at my last appt) another new suspicious mass was found on ultrasound. Biopsy is scheduled for the 17th. Could be more scar tissue, could be cancer again. We will see

JoE777

so true windingshore. I had two rounds of lower back X-rays. 6 weeks of physical therapy. Went to an orthopedic got an MRI and discovered 5 tumors. I had seen my onc in October. This started to plague me in November. I was building a sidewalk and I'm 68. Old bones. Asked my onc how do you catch it. She said pain is a good sign but I'm always in pain
Tumor markers are one tool for the doctor. My doc monitors my tumors with the test but they're not always an accurate picture. Never had them before metastasis.

Ycats277

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I had my CA 15-3 and CEA every 6 months for 3 years since my double mastectomy. Always within normal range . Now my CA15-3 came back 53 and my CEA came back 2.7 . I’m very scared . I asked to retest before PET scan . Has anyone had a high score and then went back to normal ?