• metastisizing

    Asked by Crimson on Tuesday, August 4, 2015

    metastisizing

    How do you know if breast cancer has metastisized?

    21 Answers from the Community

    21 answers
    • barryboomer's Avatar
      barryboomer

      A Pet Scan is the best way.

      over 4 years ago
    • TXHills' Avatar
      TXHills

      barryboomer is correct on that. PET scans can pick things up before they are even large enough to show on other types of scans.
      If you have a new symptom that is persistent (lasts longer than a week or two) or progressing (getting worse), please let your doctor know. She can discuss it with you and let you know if further tests are needed. You can always go see your PCP first. You know your body best and what is normal or not normal, for you. Doctors and nurses have told me, "You did the right thing. Always let us know." Even when it turns out to be nothing. Best to you.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      My oncologist isn't a fan of PET scans. He believes they give too many false positives. We use CT scans to look for tumor spread.

      over 4 years ago
    • tam4givin's Avatar
      tam4givin

      I have herd many people say they just had a PET Scan a week or 2 before being diagnosed with cancer again. I do not know if it is the person's body absorbing the sugar for scan, or the person giving the sugar, or doing the scan, or reading the scan, or what. Cancer is there way before any scan or tests can find it. So we are just wasting time worrying. i am not getting any more scans, they just add more radiation causing more cancer. I am never going to do surgery, radiation, or chemo knowing now that it all just causes more cancer, and spreads it. Cancer untreated very rarely if ever kills. I am not going to add more scar tissue pain, lymphademia pain, etc. I am going to live as well as God allows, serving Him here until He allows me to go home to him.

      over 4 years ago
    • SandraK's Avatar
      SandraK

      tam4givin? Cancer untreated very rarely if ever kills? I'm afraid you're very mistaken.

      over 4 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I have to agree with Sandra K here. If cancer is best untreated, then why was it a death sentence before treatments came about? Now, I didn't like chemo, nor will I ever like it, but it and other treatments have given us more hope for survival. Why is it that 50 years ago, BC was pretty much an automatic death sentence, and survivorship is much better today? HUGS and God bless.

      over 4 years ago
    • cam32505's Avatar
      cam32505

      For any type of cancer, you will be followed by your onc, rad onc, surgeon. They will do physical exams, blood work, and possibly cat scans. Usually, they seem to be trying to treat based on exam and blood work as they are the least invasive. For many cancers, there are blood tests for tumor markers. If these are rising, they may order other tests to see what is going on. Also, listen to the signs your body sends you. I had a friend who's breast cancer met and she had pain in her rib, which she attributed to a pulled muscle. After a couple of weeks, realized it wasn't a pulled muscle. Just follow doctor's orders and listen to your body, and try to enjoy your life.

      over 4 years ago
    • annogden's Avatar
      annogden

      Also agree with SandraK and ChildofGod4570. As harsh and difficult as the treatments are, cancer left untreated unfortunately will kill.
      Crimson, as others have said, you know your body, and if something seems out of whack to you and persists, go to see your oncologist or PCP. And don't be afraid to do it either. It is always better to know either way.

      over 4 years ago
    • Jouska's Avatar
      Jouska

      Cam32505's advice is right on. Definitely go see your PCP or your oncologist. As I neared the end of my treatment, the scar tissue from my double mastectomy and reconstruction was concerning me. I was pretty sure it was scar tissue, but it was eerily reminiscent of the lump I found that started this whole journey. So we checked it out - the oncologist's PA couldn't tell on physical exam so she referred me to a radiology for an U/S. That was hard to tell anything conclusive so they asked if I would mind if they did an mammogram. Apparently mammograms differentiate well between tumors and scar tissue. Scar tissue it was and we were all very relieved. And we now have a good baseline for the future.

      over 4 years ago
    • cured123's Avatar
      cured123

      Thanks Jouska - I just made appointment with my Oncologist, found a lump in right breast, very reminiscent of my original tumor in left breast, pretty sure it's scar tissue but better safe than sorry. Never feel bad calling my doctor if I'm concerned. That's what they are there for.

      over 4 years ago
    • EJKIRBY's Avatar
      EJKIRBY

      Don't be surprised if your insurance will not cover a PET scan. 6 Months after my diagnosis my doctor submit a request for a PET scan to my insurance company (Blue Cross Blue Shield) and was told I was not eligible. They said that the PET scan is not authorized for screening purposes. I was able to get a CT scan which showed a suspicious spot on a vertebrae in my neck which then qualified me for a PET scan. Thankfully the PET scan was clear. Just last month I asked my doctor to run another PET scan. It has been 2-1/2 years since my diagnosis and treatment (mastectomy and I am now on Arimidex). Again the insurance company has declined the PET scan. I am now going to have a CT scan. I have annual cancer marker and liver function blood test.

      over 4 years ago
    • Jouska's Avatar
      Jouska

      @cured123, be sure and allow them to do a mammo if they want to do so. I didn't know if I would ever have a mammo again since my "breasts" are the result of TRAM flap reconstruction and not breast tissue at all. But apparently mammos identify scar tissue very well, breast tissue or not. It was very clear and there was no doubt it was scar tissue. Because there is really no feeling in reconstructed boobs - this is the first mammo that didn't hurt :)

      over 4 years ago
    • Lauren65's Avatar
      Lauren65

      I email my oncologist ALL the time. She answers every question, every concern, etc. She even calls me if email doesn't cut it when answering a question. I lucked out with this Oncologist, as she is awesome. The one I had before, wasn't so good. He ended up leaving the hospital, which is fine by me. Some doctors just don't get it. She understands the urgency of my concerns, and never tries to play Russian Roulette with MY life.

      She tells me that I am doing everything I can to prevent reoccurrence. Completely overhauled my diet to clean eating, I work out 5 days a week, taking prescribed meds. She is always keeping me aware of the latest news regarding breast cancer treatments, and tests.

      I feel very lucky this woman is my oncologist. Sure, I still worry about it coming back and metastasizing, but I don't let it control my every day life. I could get hit buy a bus tomorrow. There are no guarantees in this life.

      over 4 years ago
    • baridirects' Avatar
      baridirects

      As a woman living with metastatic breast cancer since March 2014, I'd like to chime in here. There are many things that are misunderstood about metastatic disease. I'm going to be blunt, so please understand that it's not my aim to frighten anyone, but to educate.

      First off, let me make this very clear. When someone dies of breast cancer, they have died of metastatic disease. Treated or not, it is 99% fatal. That's a fact that everyone in the MBC community lives with. There is nothing that we know of in either traditional or alternative medicine that is curative - if there was, believe me, we'd all be taking it! There are certainly those patients who go into remission with various treatments, sometimes for an extended period...we call that NED, or no evidence of disease. That is NOT the same as being cured. There are also those whose disease remains stable over long periods of time on treatment. For us, that's also a very good thing. Eventually, though, the cancer mutates to where a particular treatment no longer works, and the disease progresses. At that point, the treatment is changed. Depending on what type of breast cancer you have, there are several options for treatment that can be tried. Not every treatment works for every patient, and there's no way to predict that in advance.

      By the numbers, around 30% of all early BC patients, regardless of treatment, will go on to develop metastatic disease later on, sometimes years from when hey were first treated. The more advanced your disease was at first diagnosis, the higher your chances. There are certainly some MBC patients out here who started out at Stage 1. A small percentage of patients are diagnosed in Stage IV from the very beginning - we call that being a "de novo" MBC patient.

      You asked how you know if you have metastatic disease...a lot of that depends on the protocols where you are being treated. I was diagnosed as a result of elevated tumor markers done as part of a set of routine blood tests - I was asymptomatic at the time. Others are diagnosed because they develop symptoms...back pain that doesn't go away, constant headaches or visual disturbances, a cough that persists...there are typical sets of symptoms for each site that BC tends to spread to - bone, liver, lungs and brain are the usual. Your oncologist would follow up on these kinds of things with radiographic studies as is appropriate for your type of BC - ductal is a little diferent than lobular in it's biology. PET scans are NOT necessarily used as the primary study. Often, MRI's, CT's, and bone scans are used as well, as each type of study reveals different information. Together with the symptoms you are having plus tumor marker results, the diagnosis is made. Sometimes, but not always, biopsies are taken.

      There are a lot of us living out here with metastatic disease, and we are all over the world. 108 of us die every day from it. That's a cold, hard fact. The good news is that, thanks to advances in treatment AND with the enhancement of complementary therapies, those of us with MBC are living longer and with a better quality of life than ever before. Our heartfelt prayer is that we live long enough to see a cure.

      Namaste,
      Christine

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Once BC gets into the Blood or Lymph Highway it's terminal most of the time. That's why catching it early is so important. Prevention through diet is not always successful but it gives the best odds to prevent it in the first place. A lot of cancers have already spread but the cells are too small for any Microscope to see....It is a MESS.

      over 4 years ago
    • dianalynn's Avatar
      dianalynn

      I'm also metastatic. I was cancer free for over a year (or so I thought) and my oncologist found a lump in my clavicle. I then had a pet scan to confirm. I had cancer in my lymph nodes, lung, and several bones.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Diana.....It's never completely gone. The only way to control it is from the Inside. We need to TRY and rehab our Immune system so IT can complete the job of controlling all cancer in our body. We always have runaway cells but the Killer T cells usually control it......You can't KILL your way out of this problem without some help from our own body. Re Make and Rehab all your cells and in about a year or two we become a completely new person.....

      over 4 years ago
    • SandraK's Avatar
      SandraK

      Okay Barry, I know you've mentioned some of this stuff before, but I think I'm ready to listen finally (as far as I know I'm still NED, BUT!!!) could you share some of the Help from the Inside Ideas, again, please?

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Sandra....you can look up my profile and journey and most of it is there.
      IF you have any questions just ask.....but you know the drill.....Living Plant foods mostly raw.....juicing if you can handle it or green powdered drinks or smoothies of fruit and veggies in a bullet....5 or so anti cancer supplements......and try and make your cells healthier so when they divide you have 2 new healthier cells and on and on. It's been two years for me and 99% of the lymph nodes that I had that I could feel in groin, neck and under arm are GONE.....They softened up first and little by little they just went down. Doesn't mean I'm cured or anything like that but it sure is interesting watching them go down. I have NHL and it's different that a tumor or spreading. My Guru at first was Chris Wark.....amazing 11 survivor of colon cancer....surgery only.....I just went that route and it was scary and still is.....At least I didn't get sick from Chemo or Radiation and feel great.....SO ask away if you want. The book Radical Remission is wonderful. I have the best Nutrition site run by an MD.....also......Cancer is brutal and most only beat it IF it didn't spread yet......There are MANY amazing properties in Fruits, Vegetables, Nuts and Seeds and beans that help the immune system control cancer's spread. DO research at PubMed....many great studies.....some conclusive some not BUT like I say IF we are in a row boat and it springs a leak we can bail all day and keep it afloat for awhile but unless the hole is plugged the boat will eventually sink. No guarantees with anything we do....BUT I say throw everything we can at it and PRAY.......I am glad that I didn't hurt my immune system with chemo because I BELIEVE IT is my only hope of controlling it. AGAIN......this might not work for me but at least I tried.

      over 4 years ago
    • SandraK's Avatar
      SandraK

      I hear you, Barry!

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Sandra.....It's hard at first but after awhile it's normal. The Only thing I've added after a year and a half was salmon on Saturday Night with a Sweet Potato and Salad OUT with the Misses....

      over 4 years ago

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