SO TRUE...After treatment for Breast Cancer(surgery, chemo and radiation) I asked every Doctor if I was now Cancer free.....but was told Drs. couldn't say, because micoscopic cells don't show up on any test...I am cancer free 24 yrs later and I thank Drs. and GOD every day
24 years is a long time. You are right that it is not possible to tell if someone is cancer free. You may hear the term "no evidence of disease" or "NED." This means that, based on everything we know about a person, there is no evidence of cancer. Some people have written about "dancing with NED." This speaks to the dance we do with uncertainty after a serious life event.
Very helpful! I’m six months out from double mastectomy for triple negative breast cancer. No lymph gland involvement. No follow up treatment. So I was wondering and worrying about scans not being performed. This relieves my mind. Thank you so much.
Continue to educate us! I am anxious to hear more about MBC from you. Could you explain when the magic five year treatment starts. Is it from the time you go into remission/maintenance after chemotherapy or the time you are diagnosed? Do multiple scan scans cause more cancer? If you opt for every four months versus three are there any studies showing a longer length of time that prolongs life. I knew someone who was diagnosed at 70 and lived 10 years. I also would appreciate it if you would promote researchers to design clinical trials for collecting data on support supplements such as turmeric, ginger, and cinnamon. There are studies on rats, but not humans. I am sure the medical communities could get many patients to participate. Someone should be able to create a data base and query to do this. We are waiting.
Thanks for the great questions. We actually have a really hard time studying the therapies you write about because people with cancer do not want to take more things, and people without it (even those at high risk) are not easy to recruit. We are trying. The 5-year mark for people with Stage I, II, or III disease starts at the time people are free of disease (specifically, after surgery). For people with advanced/metastatic disease, the 5-years starts at the time of diagnosis. We do have people live 10 or more years with metastatic disease, including people 70 and over. We hope this is helpful.
We're sorry to hear about your experience. It's crucial to advocate for scans if you have symptoms. Always speak up if you feel your concerns are not being addressed. Thank you for sharing your experience.
I was told I could have a scan 2 months after radiation was completed. During my mastectomy they found 4 in the 12 dissected lymph nodes with breast cancer. They decided to pursue radiation. I just want to cancer free when I ring that last bell.
You were presumed to be cancer free, as far as it's possible to tell, before you started treatment. The scans afterwards are useful only if they show advanced disease. That is, a negative scan does not mean there are not microscopic areas of cancer. This is why we treat people with everything we have when they are first diagnosed. Yerbba is rooting for you!
Very helpful video for those of us that are in the survivorship stage! Thank you for providing clear reasoning for not needing to do imaging. Looking into the future it will be interesting to see if ctDNA tests will change outcomes.
There are some docs out there who order scans post-treatment. My medical oncologist ordered a CT scan after my treatment of mastectomy, chemo, and radiation. And I'd had CT and bone scans before surgery which showed no metastases. Dr even said some of the things you did - won't pick up anything unless it's a tumor, CT scan is like having 200? chest xrays.
CT scans do give a lot more radiation therapy than a regular x-ray. Over many years, the excess radiation therapy may cause problems, especially on a population level. As a reminder, you can "negotiate" with your doctor, explaining why you would rather not have scans. In addition, there is no evidence that having this type of scan ("surveillance scans") improves survival, so someone in your situation could use that as a discussion point. Hope this is helpful.
Exactly. We can't know if microscopic cells are present before or after chemotherapy. They cannot be seen on scans until there are about a billion cells in one clump. Great question.
Helpful one Doctor, there was some regret for not acting immediately after seeing the lump in breast, it decreased little bit. I think HER2 POSITIVE stage 2A and stage 1A both have similar treatment?
You are correct that the treatment is essentially the same. The biology (personality, including HER2, ER/PR, and grade) drive treatment recommendations as much as does the stage in such a tumor.
As a breast cancer survivor I personally hope there will one day be a test that will show definitely after surgery if there is breast cancer left in the body. Living with the thought in the back of your mind that cancer cells may still be in the body and grow again at some point is not a fun way to live.
That would be ideal. Then we would not have to give chemotherapy if there were no cells. We make an educated guess based on data from thousands of people, but we agree that we can do better.
Thank you 🙏🏾🙏🏾 . Diagnosed HER2 positive August 2021. I'm on my 3 bout of chemo, just 2 more sessions to go, had surgery, radiotherapy etc. I am absolutely petrified and convinced I have cancer still and that they won't find it because I'm having no more scans. You have taken away some of the anxiety that I have. Thanks again, from London UK❤
I was diagnosed with her 2 positive breast cancer end 2022 , had targeted therapy Tamoxifen, then mastectomy, now I'm on kadcyla 11 treatments and taking Exemestane, I didnt have Radiotherapy, did they offer you a mastectomy? The oncologist said I'm cancer free and I have to take the inhibitors for 5 years, to stop a recurrence, I did wonder how they know I'm cancer free without MRI ,guessing it's the bloods they check to ?
Thank you Dr. Griggs for this video..after dx with stage 3 lobular cancer, I did have scans which luckily showed the dancer had not spread..now 14 yrs out I wonder if period scans would be helpful considering lobular ca pops up in unusual locations, difficult to identify due to characteristics, etc?. I do continue to see my oncologist yearly..wonderful and supportive MD...thank you.
Scans are actually not helpful in changing the outcomes (survival in particular) of people who have had breast cancer. The key is to reach out to your oncologist if you develop any symptoms.
If you’re still answering questions, could you tell me why an MRI would not be ordered at least yearly for someone who has had a double mastectomy and can no longer have mammograms, but has a strong family history of breast cancer reoccurring? My understanding is that an MRI can detect a cancer cell the size of a pencil point. Wouldn’t it be better to detect it when it is a few cells and try to eliminate those, rather than waiting for them to grow and potentially spread and before symptoms present? I hope my question makes sense.
Your question makes a lot of sense. After mastectomy, there is no (or very little) remaining breast tissue. Unless someone has a lot of redundant breast tissue after mastectomy, there is no benefit from imaging. This is why a lot of people get mastectomy. Recurrences after mastectomy generally are on the surface of the skin and show up as non-compressible lumps. These do not show up on MRI. Hope this is helpful.
Breast cancer is a disease that comes back. I wish I knew this before it came back to lungs spine and bones. I only find out about it by chance and I would be dead by now if I didn’t find out. Also the cough could be a flu and pain when walking can be from hormonal treatment so all the signs of cancer coming back are not obvious. I also had a mammogram done once a year on the other breast and I don’t understand what’s the point of it. Breast cancer doesn’t spread in order. And so while I was thinking I am in trashed hands I was already developing cancer in bones and lungs. I even went to GP as I couldn’t walk as the L4 vertebrae was giving me electric shocks like pain and I was send to physio therapy and refused pain killers to force my spine to work with damaging exercises that I couldn’t do. Shouldn’t the dr. Know my med history and know the pain in the bones and spine was cos cancer spreads. I also was misdiagnosed twice doctors just ignored a lump in my breast without sending me for a scan. 😮
Thank you for sharing your experience with the Yerbba community. It sounds as if you've had a terrible run of it. It's understandable to feel frustrated and let down by the healthcare system when facing such a serious situation. We're here to provide support and information as you navigate this journey, and we hope for the best possible care and outcomes for you moving forward.
Am praying for you. People in the medical field work with so many patients sometimes they forget we know about our bodies and they may also forget to think of certain situations unless we remind them (push for what you think you need), because they are human too. Many think they are above and know all things, but they do not. Yes, they are highly educated, but they are human. They probably want to do the best for you, but in some way have failed you. Be persistent and keep pushing them for what ever it is that you need. If they don’t comply, seek a different person. I am sorry you are going through this and will keep you in my thoughts and prayers. I am also monitoring some nodules in my lungs and have had to push them to look at that again. They wanted to move on and ignore it, but in my last scan, there was a new, bigger nodule and I had not been “sick” besides breast cancer. We will examine it again and keep an eye on it. Hugs to you and I hope you get some treatment that works for you. ❤
Yes this was very helpful. I have my first follow-up mammogram in Oct. Already nervous with scan anxiety. I'v never been one to go running to a Dr. for every little ache or pain. Seems my life is going to be way different now.
@@sue8319 Sue, thank-you for reaching out in solidarity. It's good to know that your not the only one feeling nervous and anxious. Not knowing something has got to be the worst. My last mammogram revealed a 2.5 cm tumor with 3 positive lymph nodes Her 2+. Sue I can only reach out to give you a virtual hug. & say something cliche like ( you got this girl ). Best wishes to you that all will be clear & we'll be just fine.
Please don’t think of it even now as ‘running to a Dr’. Let the team and your GP do their job and keep an eye on you. If things don’t feel right, don’t hesitate to let them know.
Have breast cancer in January 2023.Did chemo, mastectomy and radiation. Started on anastrozole November 2023 and calcium plus vitaminD3. I live One day at a time.Stress over cancer recurrence is not on my mind.Cancer love stress,therefore I have a positive mindset.I eat healthy and exercise.Whatever to be will be.
I was diagnosed back in 2021 with HER2 oestrogen receptive breast cancer in my right breast. I opted at my then age of 68 to have a mastectomy on my right breast only. This meant that I didn’t have a lumpectomy , chemotherapy, radiotherapy. A month later my Consultant told me it was the best decision that I could have made as during my operation my first lymph node was removed and there was a microscopic amount of cancer on it. But lymph nodes 2 and 3 were clear. I am now taking Anastrozole once a day and Calcociferol (Vit D) which after a couple of weeks, all minor side effects stopped. I also have Zoledronic Acid infusion twice a year with no side effect at all. One of the best things that I did was to take my husband with me on all appointments. That way he listened to every word that was said so that we could have our own discussions as to the way forward.
Thanks for sharing your story. Just as a point of information for our other viewers, decisions about chemotherapy are separate from surgical decisions. That is, someone who has a lumpectomy may not require chemotherapy, and someone who has a mastectomy may be offered chemotherapy to treat disease elsewhere in the body. Wishing you the best, and keep coming back. Greetings to your husband as well.
Thank you for sharing your experience with Anastrozole and Zoledronic infusions. I'm starting Anastrozole in a week. I signed up for Zoledronic infusions and withdrew after reading about debilitating side effects. I'm on Calcium, Vit D3, Magnesium G., K2MK7 supplements with weekly Fosamax. It's encouraging to know that not everyone suffers intolerable side effects on these treatments.
@@mjdsouthsf and @yerba. I don’t regret any decisions that I made; however, my Consultant completely stumped me when she said that I was on the criteria for samples of my breast cancer to be sent to America for further investigation. So taking the Anastrozole was delayed until their ‘findings report’ came back. The results came back the first week of January 2022, and the report stated that due to the life long medication that I am on for epilepsy; under no circumstances was I to be given either Chemotherapy or Radiology. Either of those treatments would annihilate all the good work that they had done since 1978 and I would be back to square one. My own personal advice to anyone is to give as much information as possible about personal medical information. A case of ‘Belts and Braces’, to cover all involved. Health mustn’t be a guessing game. ((((Hugs to all))))
@@yerbba ....Many thanks for your reply. However, it was my Consultant who told me that her plan was first a lumpectomy followed by Radiology, and lastly Hormonal Treatment. It was MY decision to leapfrog the first two and go straight for a partial mastectomy as I felt that at approaching 69 years old; I had no time for vanity, had I been a lot younger, my decision might have been different. However, it’s my body, therefore my choice and the Consultant agreed. After all, I could just have said “Thanks but no thanks; I’ll enjoy the time I have left no matter how long or short that may be. Today, I have taken delivery of my medication and was shocked to see that statins have been included on the basis of my previous blood test that showed that my LDL cholesterol is slowly rising and I know what that means but was I offered an appointment with the Health Nurse to discuss diet? NO, I was not. The surgery pharmacist decided I need statins even though I told him that I wanted a few days to think about it. Well, I won’t be using them. Do I want headaches? Do I want stiff joints? Do I want constipation? Hell, no I don’t. I get enough of that from the Calciferol. I’ll adjust my diet and enjoy the rest of the time I have got. BTW, I have never eaten so much fruit, Apples🍏 Bananas 🍌 🥑 Avocados and Grapes 🍇 in all my life. Plus, loads of green vegetables. Plus upped my intake of oily fish and various beans. Three bean salad is delicious 😋
I found my lump and waited 3 weeks to call because I was scared. It helps to have it reinforced that my outcome would have been the same. Stage 2 breast cancer, 4 lymph nodes out. 1 had cancer
You are not alone! Many people delay a few weeks for lots of reasons, including being scared. Three weeks are extremely unlikely to have changed your prognosis.
I just had a left mastectomy in May 2023 and was told that no evidence of cancer in the right breast. Now, a mammogram and ultrasound was done in August, and there are three mass which will require a biopsy. Why did the contrast MRI I had did not pickup any mass in both breast? Should I have other tests to see if cancer is in other parts of my body?
MRIs are not perfect, and it's also possible that these areas were not seen back in May because they were too small to be detected. If these do end up being malignant, you can certainly bring up having additional scans with your medical team. Come back and let us know how things turn out.
I think it could be like she said, maybe too small. My tumor was 4 mm when first found and in a month and a half (the length of time I had to wait for surgery), it doubled in size to 8 mm. It could be they grew at a rate similar to mine and they just did not show up earlier. How big were the masses?
Some people definitely do this! In people with high risk disease, the desire to receive treatment to help get more years of life is worth getting treatment.
I've asked this question to my oncologist but you're explanation is the best ! Thank you for this video.I 've been following you since I got diagnosed in July last yr . It's been very helpful .pls continue the good works ☺️
These highly sensitive tests have not been shown to improve outcome (yet). Remember that, if we do find evidence of distant disease before treatment, the goal shifts from cure to management (control) of the disease. Getting these tests after completion of therapy means that you are treatment for longer, but the outcome is the same. You are just aware earlier that you cancer has recurred. Treatment will work the same if you are diagnosed when you have symptoms, and you won't be a "cancer patient" for as long.
My oncologist said the same thing….. it would be like chasing rabbits down the hole and could even show that early and then be fought off by your body naturally.
Stage 1, 2 lumpectomy’s, radiation, finished May 2023. Breast lesions healed however still some tenderness& soreness at times. Mammogram scheduled for Dec. yes anxious. Thanks
Thanks so much for sharing your story. It's so normal to be nervous. If you find your anxiety is interfering with your quality of life, make sure to tell your medical team.
Now I understand why my surgeon said she wouldn’t be ordering scans at the 6 month mark from surgery. I have scanxiety now that I’ve had 2 breast cancer diagnoses. I’ve had a mastectomy now we watch the other breast.
Thank you so much Doc for the info...2019 when i was diagnosed of stage breast cancer had my 18 cycles chemo no radiation from then on every months i had my ct is it ok Doc to have it done evry 6 mos even resukts find no recurrence they called it surveillance
Best explanation I have heard, thank you! I have finished my cancer treatment but continue to watch your videos. I love my team but you have a way of explaining things so clearly.
Thank you so much for your kind words! We're grateful for your support and thrilled to hear that our videos have been helpful to you even after your cancer treatment. Let us know if there is a topic you'd like to see. Wishing you continued health.
Thank you for this information. This is the best explanation I've heard. 20 years ago I did a clinical trial for Metastasized Melanoma. I was NED all this time but in January I was diagnosed with triple negative breast cancer. I'm almost done with my chemotherapy and immunotherapy. I've found this site to be the most helpful on the internet. Much appreciation for the work you are doing.
Thanks so much for the feedback. In general, people diagnosed with melanoma and triple-negative breast cancer should have genetic counseling and perhaps testing. Just a thought reading your history. Triple-negative breast cancer warrants testing on its own. Keep coming back.
I was diagnosed with Stage 3 melanoma in 1998, I have not had a reocurrance to date, and under regular care . I was told by my dermatoligist I have to been seen every 3 months for the rest of my life because of the chemo and rads and the risk or the melanoma coming back.
I don’t understand why they don’t do a pet scan before chemo. What if it was already in the other breast or bones? I got one for colon cancer. I know, just lucky.
This is an excellent question and a little different from the topic of this video. Scans, such as PET scans, are unable to detect small foci (spots) of cancer. It takes 1 billion cells together in a clump to show up on scans. Because we know that even small clumps may have spread before the primary tumor was removed, the results of such scans do not really reassure us. There are some people in whom we do scans, including people with symptoms and people with a higher likelihood of metastases at diagnosis, specifically people with Stage III (3) breast cancer. When we do find cancer in other parts of the body, the goal is to manage the disease rather than to cure it.
There is no evidence at this point that being monitored with CT-DNA improves outcomes. There's always the hope that detecting cancer recurrence early can change outcome, but that's not yet been shown. Given how much distress you're having with the testing, this would be worth talking over with your doctor.
Great question! You can find clinical trials through the National Cancer Institute’s website (cancer.gov) or ClinicalTrials.gov. Additionally, local hospitals and cancer centers in Miami, such as the Sylvester Comprehensive Cancer Center, often have information on ongoing trials. It's wonderful that you're considering this! (By the way, we think you're the best too!)
I had stage 2 breast cancer, I did a PET/CT scan after 16 doses of chemo there is no evidence of cancer but I am taking radiotherapy and hormone therapy to lower the risk of recurrence
I am in that group that had breast cancer, had surgery, but that was it. Mine was in 2012 since then I had no other treatment or check ups Now I am 80 and have noticed new breast pain in the same breast. What can I do.
Seeing your medical team with your new pain would be important here. Your primary care physician can refer you to a cancer doctor if you're no longer seeing your oncology team regularly.