@A MyBCTeam Member is correct. Bio markers in the blood aren’t very reliable and they found cause more stress then help. So I am guessing you recently finished treatment because this is when we all kind of feel hung out to dry. We have had this huge support network from doctors, nurses, counseling, friends and family and when we finish we are on our own. Also this is usually when we actually have a minute to take a breath and think about what we have just been through and it is scary and emotional. Had my first panic attack 6 weeks post treatment. Was thinking about going back to school and out of no where couldn’t breath and though omg what I my cancer comes back while I’m in school! I couldn’t handle both blah blah blah... I also wanted to know how do I know what is regular I’m getting older aches and ones that should be concerning. One thing I did make them do is a base line bone scan. Something to compare if later we needed too. I had to fight to get it. I also had a lot of back pain and wanted to know if the scan came back clean then I knew what this back pain felt like and if something knew or worse happened I would have something to compare it to mentally. My onc told me the two week rulle if there is a new pain or bump and it’s still there and an issue two weeks later go in. Unless of course it’s something super painful and obvious. As time has gone on my two week rule has kind of turned into a two month rule. As more time gets between you and your last treatment you start to relax more. It never goes away but it goes to the back of the brain and more of a whisper vs a blood curling scream. If i get a new pain I make a note in my head and see if it goes away. Some people keep journals. But other than that there really isn’t anything else. Get your yearly physicals and metabolic blood panels things like that. But the biggest signs are extreme pain and extreme fatigue. You will just learn to read your body.

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A MyBCTea...

My understanding is that most docs don't do standard testing to look for mets anymore because it does not extend the life span in most cases. The most common places for breast cancer mets are bone, brain, lung and liver. At your doctor visits, they will ask about symptoms which are bone pain, double vision, headaches, shortness of breath or cough, and feel your belly for liver enlargement. They will check labs occasionally too, elevated liver enzymes or calcium levels can be a red flag. Be well:)

You see as women are hormones are a delicate but incredible interconnected web. But with treatment they get thrown out of whack and when one is off the other follow. The major triangle is our ovaries, adrenals and thyroid. Well with treatment our ovaries take a pounding and the other areas over compensate. Many women end up with adrenal fatigue which cause extreme fatigue as well. My advice would be to find a naturopath or a physician that specializes in functional medicine. They treat the entire body. You will get blood panels that even show inflammation. Get tested for the MTHFR mutation. They will test your adrenal levels, thyroid, insulin, cortisol, female hormones, liver enzymes, kydney function, testosterone, cholesterol, vitamin D, Iron, B-12, folate. All of this will help them start to see where your body is off and start to help get your body back to functioning properly. It’s unfortunate but most western doctors only treat symptoms and only one area of specialty. Our entire body works together.

Hopefully my four years of frustration and doctor after doctor will give you a head start to feeling better. You are going to have to fight for your health because unfortunately there is still institutionalized sexism in the medical field and we have to fight even harder to get doctors to listen to us. But don’t be afraid to be your own advocate and if they don’t listen fire them and find someone who will. They work for us. Had doctors listened to me 15 years ago when many symptoms of PCOS started to show I probably wouldn’t have gotten breast cancer (one of the side of effects of being left untreated) but now I can just focus on treatment now to help prevent it from coming back. Good Luck and if you ever have more questions please hit me up. I feel like I’ve been in medical school the last 7 years from all the research I’ve done on all of this. Lol.

@A MyBCTeam Member I’m sorry you are going through this. But if your original breast cancer was estrogen positive it’s actually not very uncommon at all for it to return decades later. They are finding that it’s the hormone + breast cancer are the ones that are metastasizing (Phone number can only be seen by the question and answer creators) years later. For one most are on some sort of hormone receptor or blocker for some period of time. And estrogen + cancer are very slow.

I belong to a foundation that offers free second opinions. It’s made up of top doctors are the US and are on top of the latest trials etc. go to weheal.org and there is a button to click for a second opinion. I can help walk you through it if you have questions.

I stopped taking tomoxifen because of all the horrible side effects it was causing. I am currently working with a naturopath to flush and keep extra estrogen out of my body since my cancer was also estrogen positive. But I learned years ago that 5 year milestone everyone strives to reach to finally take a deep breath doesn’t apply to those of us with estrogen positive cancers. I also found out that there was a drug that helps prevent the spread to the bones which for us would be more beneficial than any hormone blocker. It’s really frustrating because we have to do so much of our own research and advocacy. And even doctors aren’t consistent with what they tell patients.

But take advantage of weheal. To have access to this type of specialist would cost any of us at the very minimum at least $3K but it’s all funded by a private donor in the Bay Area. Please let me know if you have any questions.

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A MyBCTea...

I agree cggracie, I am very interested in complementary and functional medicine. I see more and more trend in that direction. I see a naturopathic oncologist which has helped me so much. Maybe look into that Annia? I seen mine in addition to the traditional onc. We can learn skills and supplements to optimize our cancer treatments! Be well:)