Is It Normal to Have No Post-Cancer Treatment Tests?

Yes, there really isn’t anyway for your surgeon to know with 100% certainty that every single cancer cell has been found and removed with surgery. I had a bilateral mastectomy 6 yrs ago, with an excellent cancer surgeon and she told me the same thing. Any surgeon who promises you they will get all the cancer and related cells, should be a red flag that the surgeon isn’t telling you the whole truth.

I just had a double mastectomy, and was told the same thing. So are we just to go home and wait to see what cancer does?

Yes this is a really hard subject- I started out in 2016 with stage three her 2 positive metastatic breast cancer. Mastectomy left breast, chemo 5 months and radiation 2 months. Then in 2020 cancer reappeared in my lower my sacrum area. Radiation then placed on ibrance and letrozole. PET scans every 3 months with zometa infusions. I am now stage 4 but still am now in remission. My experience always be on top of your care. This app is a great place to stay connected with other people going through the same thing. It is a fight but I am very excited with all the new trials. I finished the ibrance and now do immune globlin infusion. I took a test and found out my body does not make enough plasma. So I now have normal antibodies to fight cancer or viruses. Remember you are your own advocate for care.

Ask about signatara. It’s a blood test that can detects circulating tumor dna from your original tumor. It’s a monitoring tool. Unfortunately it’s also not 100%. There can be microscopic disease with new studies discussing cancer stem cells. I had a mastectomy with clear margins for DCIS in 2019 and was just dx with invasive reoccurrence in same breast in February. No way to know for sure. But Signatara is a monitoring tool that if it comes back positive can give you a head start at least before EOD shows up on scans.

Thank you

My oncologist says the same thing. No scans bc I’m stage 1A

There is a blood test CA27.29 that you can get to see if cancer cells are circulating. But, it is not 100% accurate and could show a false positive. My cancer metastasized after 15 years .

Would be awesome if I could get my oncologist to even think of these tests.

Donna, it is not in the NCCN guidelines. This app uses them in their 'treatment' plan for your diagnosis. If your BC is HR+, you could ask your Dr to give you an AI. My sister is on one even though her BC was stage 0. But, she has a high risk of it recurring. Be aware of your body, this app has lots of advice on signs on recurring BC. Hoping you will find a way to give you peace of mind.

Hi Caitlin did you take an AI and the DCIS still reoccurred?

My oncologist said the same. Chemo,radiation. No more scans. My question is after completing all treatment how will we know the cancer is gone?

There are levels of truth here. Yes, there is no way that anyone can know if there aren’t cancer cells already circulating in your body… BUT it is helpful to know that even with a double mastectomy that you can get a regional recurrence (lymph nodes, chest wall) and that there are ways to screen for a recurrence before you are symptomatic… one is a blood test I only just learned about — a great way of testing the blood for signs of recurrent breast cancer through Signatera — and the other is to request an MRI in about 5 years, and then every 2 years afterwards — along with full body CT and bone scans — also at 5 years post your current treatment.

Aim going to do my doble Mastectomy this mount and aim very scare but a lot .. and I ask why aim not having radiation and just herseptin and Docetacsel . And she told me because you don’t have limp node but wend aim going to see your lymph node in the surgery and sent team to patology and it came back whit cancer I will give you radiation . Know I ask is this is thru ?

I believe research has found no difference between mastectomy or lumpectomy in predicting BC recurrence.

@A K no i did not. I was 34 at the time and wanted kids. I’m 39 now with the reoccurrence and we have been trying to get pregnant for 4 years :( . I’m at 7% distant risk with hormone therapy 14% w/o and I’m still debating not taking them. Iv struggled majorly with anxiety and depression that gets exerted with weight gain. I don’t know if I’m ready to give up my sexuality as well as my ability to have children for a 7% no guarantee

Caitlin, as someone who had 2% risk (4% without) I opted at age 61 to discontinue with AI (after 4 months trying 2 different ones). I decided I’d rather have 10 good years of quality of life than suffer through the AIs. I don’t regret that decision, even though at age 69 we discovered I had MBC. What I did NOT know and wasn’t offered, was to do a full body bone scan, and MRIs of the breast region (chest wall, lymph nodes) starting at (let’s say) 5 years… and then at some unspecified interval afterwards. They could have got out ahead of it. Not stopped it… but given me the best chance of living with it. We only found it by accident. My advice to you is to forge ahead with quality of life, kids, family, etc, give it your best shot AND work with your surgeon/ONCO to give you the best monitoring available. No point in any of this if you are worried sick all the time. You got this! As a side note, I seem to be tolerating the AI I am on now fairly well… maybe because I am that much further from menopause (mine was late at 58).

They should be able to tell from pathology if they got all the cancer

A positron emission tomography (PET) scan is a nuclear imaging test that uses a radioactive tracer to create 3D images of the inside of the body. PET scans are often used to look for cancer, but they can also show how well organs and tissues are working. *** perhaps this will help

I told my Oncologist to do me a Pet scan after my doble mastectomy and they refuse to do it . So what I did I went to the Radiology department and ask how much it cost to do it and told me 500.00 and that is what aim going to do , because going true this is not easy . I know that maybe some of us can’t pay by the own but if you can go and do it . Just you have to know what exsacly is the test name or code for you can do it . Just ask the doctor what is the code for do the tests and they will give it to you .

My oncologist say no more PET/CAT scan. I will get a mammogram & MRI once a year. I am still advocating for a new PET/CAT scan because I have two supraclavicular lymph node involved & those are not removed.

I have TNBC stage three and have gone through double mastectomy, five chemo, and 33 radiation treatments. I am currently in year 3.5. When I asked my oncologist how we would know when the cancer has metastisized, she answered it will show in your blood tests. Every ache and pain scares me. I am 81 years young and have been told to quit worrying because I have already lived longer than the national average. "Just go out there and live your life." Not very helpful advice for someone who likes to plan ahead and take control.

Hello. I did my doble mastectomy too , I that what I had read and tell that cancer can come back in any part of your body , but I believe in something that is what you eat and how you treat your self after Cancer . We have to know how we treat our self . Aim working in this a lot and not to gain weight and go to walk, relax, not to think in the word Cancer or talk alway about this big enemy. I know isn’t that easy ,I brink all the vitamins i can turmeric , vitamin D B12 Elderberry supplements vitamin C ,Iron it call SPATONE , less coffee if drink coffee do it decaf just one cup I day in the morning . No chocolate no sugar no candy , try to do the best to keep those bad cell sleeping for the rest of they life and don’t wake up . Hope I don’t have to recive Cancer again , but right know aim in Projera , Herpentin , just those too , no radiation . My oncologist did not fine NO cancer in my lymph nodes . But even I have to keep faithing this cancer cell that maybe I still have on .. And pray and pray to Jehovah and say to make us hold in this big war . Deu 31:6,8

Breast cancer does what it wants. I had double lumpectomy and radiation and took AI. I had a recurrence; I had a double mastectomy. It has been 3 years with no recurrence. I have had to have biopsy of my endometrim and am following up on small growths on my parathyroid. I choose to believe in my medical teams and trust the Universe

I was told PET scans can't detect BC because it doesn't have a marker, like prostate cancer does. Basically, you won't know if you have any cancer.

It sure does, what it wants.. Had double mascectomy in Feb 2024 got threw that and radiation fine.. I had3 lymph nodes removed in left breast.. About 3 mths after I developed lymphadema in my left arm .Blew up like a balloon. That is the worst thing I could imagine. No cure, I'm was in lmphatc therapy for 2 mths. Will never be the same.. SPECIAL COMPRESSION GEAR that you have to wear about 24=7 Very disheartening..