Pinned Thread About How to Lower Recurrence after Chemo

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  • Meggy
    Meggy Member Posts: 530
    edited February 2010

    Pure, when your oncologist tells you what the drug was that he or she said was going to be big for tiple negatives, please include your details here.  I am very excited to hear what the new is!!!

    Meg

  • angelsabove
    angelsabove Member Posts: 363
    edited February 2010

    Meggy----------I too am VERY EXCITED to hear this. I just completed my 32 radiation treatments last Friday.....Just stating the journey on the other side of treatments.....KINDA LONELY without something to take.....YA know some kinda drug to help us lower our recurrence. I have read MANY of your threads. I also read the one about you planning  a wedding....hope all is well.....

    LOVE U LADIES......

    MAY GOD BLESS US ALL

    OH yea Meggy.....u seem so informative on the threads....HAVE you heard anything about a triple negative vaccine????? Seems like something came out at one time about it and now I havent heard anything......

    LOTS OF LOVE 

  • twosparrowsflew2
    twosparrowsflew2 Member Posts: 23
    edited February 2010

    Hi, I am new to this - only signed up last night.  I too am a 3Neg.  I have had my first chemo and my second is due this coming week.  I am at a total loss sometimes reading all the above information and deciphering the terminology.  My mass is reported as a 33mm grade III IDC with associated high grade DCIS.  Unfortunately I ended up having 4 surgeries, the first 2 lumpectomys (as my surgeon was positive that that was all that was needed) but unfortunately the lateral margin was involved with high grade DCIS. The 3rd surgery was therefore a full mastectomy and the 4th the next morning as a haematoma had developed and had to be drained back in theatre.  Of the 13 lymph nodes retrieved one had metastasis.  A bone scan performed also showed uptake at the previous sites of sternal (from car accident in 07) and wrist fractures.

    So all in all I still have no idea!  Please help!

    Priscilla

    All I can decipher from my various medical reports are that there was egress of activity to at least 3 left axillary sentinel nodes.  Also activity in internal mammary lymph nodes in the 1st and 2nd left intercostal spaces, and activity in a left inferior jugular lymph node.  13 lymph nodes were removed in the 1st lumpectomy of which 1 was malignant.

  • jodiel1
    jodiel1 Member Posts: 51
    edited February 2010

    hi

    just wanted to ask, what does it mean when you have associated dcis.in one of my mums notes from her first biopsy it said grade 3 idc with high levels of associated dcis. I understand about dcis but not sure about the associated bit? x

  • PauldingMom
    PauldingMom Member Posts: 927
    edited February 2010

    Welcome 2sparrows

    Seems a little slow on this topic lately. I know I've had some other stuff going on but just wanted to thank you for joining. Check out the post "Starting Chemo. in July" for some great site ideas to get help while you go through chemo. 
    I also encourage you to join the newest group who has just started chemo. 

    Pink Hugs, Lisa 

  • Meggy
    Meggy Member Posts: 530
    edited February 2010

    2 sparrows....one wonderful thing to hang on to...chemo works really well on high grade triple negative cancer.  Believe it or not...I loved chemo...felt so secure with it flowing through  my veins.  It is a blessing for sure.  I had dose dense (every 2 weeks) AC and then taxol also dose dense (every 2 weeks.)  It was the "gold standard" in treatment 2 years ago at Stanford.  Many women with triple negative cancer are cured.  Take good care of yourself to not  miss a chemo infusion...take your nylasta shot the next day...it keeps your cells ready for the next dose.   More is coming down the road for us....we are the hot topic.  Someone will come out with a targeted treatment or vaccine soon.  Bless you. 

    Meg

  • bkglenn50
    bkglenn50 Member Posts: 138
    edited March 2010

    I was diagnosed in 2008 and now have mets to my liver. I just had surgery to remove them. Chemo again starting march 17th. Ive been beating myself up trying to figure out what i did to make it come back. I dont know, I wish I did.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • weety
    weety Member Posts: 1,163
    edited March 2010

    The article must be referring to the grade,not stage.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    Please note BOLDED type regarding staging... "A cancer's stage does not change"
    Making Treatment Decisions
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    Staging is the process of finding out how much cancer there is in the body and where it is located. Doctors use this information to plan treatment and to help determine a person's outlook (prognosis).
    Staging

    Staging is the process of finding out how much cancer there is in the body and where it is located. It is how the doctor learns the stage of a person's cancer. Doctors use this information to plan treatment and to help find out a person's outlook (prognosis). Cancers with the same stage usually have similar outlooks and are often treated the same way. The cancer stage is also a way for doctors to describe the extent of the cancer when they talk with each other about a person's case.

    Why is staging needed?

    Doctors need to know the amount of cancer and where it is in the body to make sure a person gets the best possible treatment. For example, the treatment for early stage breast cancer may be surgery and radiation, while a more advanced stage of breast cancer may need to be treated with chemotherapy, too. Doctors also use the stage to help predict the course a cancer is likely to take.

    What is the doctor looking for when staging cancer?

    For most cancers, the stage is based on 3 main factors:

    • the original (primary) tumor's size and whether or not the tumor has grown into nearby areas
    • whether or not the cancer has spread to the nearby lymph nodes
    • whether or not the cancer has spread to distant areas of the body

    Some cancers of the blood, such as leukemias, are not staged in this way because they are assumed to be in all parts of the body. Cancers in or around the brain are also not staged using the TNM system, since these cancers can disrupt vital brain and body functions before they even begin to spread.

    What does staging involve?

    Doctors gather different types of information about a cancer to figure out its stage. Depending on where the cancer is located, the physical exam may give some clue as to the extent of the cancer. Pictures taken during tests like x-rays, CT scans, and MRIs may also provide information about how much and where cancer is in the body. Taking out tumors or pieces of tumors and looking at them under the microscope (biopsy) is needed to confirm the diagnosis of cancer, but it can also help stage the cancer. Samples can be removed either during surgery or during less invasive biopsy procedures. The different techniques used to remove and examine samples are described in our Surgery document.

    Types of staging

    There are different types of staging.

    Clinical staging is done at the time of diagnosis, before any treatment is given. It is an estimate how much cancer there is based on the physical exam, imaging tests (x-rays, CT scans, etc.), and sometimes biopsies of affected areas. For some cancers the results of other tests, such as blood tests, are also used in staging. The clinical stage is a key part of deciding the best treatment to use. It is also the baseline used for comparison when looking at the cancer's response to treatment.

    Pathologic staging can only be done on patients who have had surgery to remove the cancer or to look at how much cancer is in the body. It combines the results of clinical staging with the results from the surgery. In some cases, the pathologic stage may be different from the clinical stage (for example, if the surgery shows the cancer has spread more than it was thought to have spread before surgery). The pathological stage gives the health care team more precise information that can be used to predict treatment response and outcomes (prognosis).

    Restaging is not common, but it may be done to find the extent of the cancer if it comes back (recurs) after treatment. This is done to help decide what the best treatment option would be at this time. Restaging is discussed further in the section "A cancer's stage does not change."

    The TNM staging system

    At one time there were many different systems used to stage cancers, and sometimes different systems were used to stage the same type of cancer. But many of these systems did not give doctors very useful information.

    The American Joint Committee on Cancer (AJCC) developed the TNM classification system as a tool for doctors to stage different types of cancer based on certain standards. It has replaced many of the older staging systems. In the TNM system, each cancer is assigned a T, N, and M category.

    The T category describes the original (primary) tumor. The tumor size is usually measured in centimeters (2 and 1/2 centimeters is about 1 inch) or millimeters (10 millimeters = 1 centimeter).

    • TX means the tumor can't be measured.
    • T0 means there is no evidence of primary tumor (it cannot be found).
    • Tis means the cancer is in situ (the tumor has not started growing into the structures around it).
    • The numbers T1, T2, T3, and T4 describe the tumor size and/or level of invasion into nearby structures. The higher the T number, the larger the tumor and/or the more it has grown into nearby tissues.

    The N category describes whether or not the cancer has spread into nearby lymph nodes.

    • NX means the nearby lymph nodes cannot be evaluated.
    • N0 means nearby lymph nodes do not contain cancer.
    • The numbers N1, N2, and N3 describe the size, location, and/or the number of lymph nodes involved. The higher the N number, the more the lymph nodes are involved.

    The M category tells whether there are distant metastases (spread of cancer to other parts of body).

    • MX means metastasis can't be evaluated.
    • M0 means that no distant metastases were found.
    • M1 means that distant metastases were found (the cancer has spread to distant organs or tissues).

    Each cancer type has its own version of this classification system, so letters and numbers don't always mean the same thing for every kind of cancer. For example, for some cancers, classifications may have subcategories, such as T3a and T3b, while others may not have an N3 category.

    Stage grouping

    Once the T, N, and M have been learned, they are combined, and an overall "stage" of 0, I, II, III, or IV is assigned. (Sometimes these stages are subdivided as well, using letters such as IIIA and IIIB.)

    For example, a T1, N0, M0 breast cancer would mean that the primary breast tumor is less than 2 cm across (T1), does not have lymph node involvement (N0), and has not spread to distant parts of the body (M0). This would make it a stage I cancer.

    A T2, N1, M0 breast cancer would mean that the cancer is more than 2 cm but less than 5 cm across (T2), has reached only the lymph nodes in the underarm area (N1), and has not spread to distant parts of the body. This would make it a stage IIB cancer.

    Stage 0 is carcinoma in situ for most cancers. This means the cancer is at a very early stage, is only in the area where it first developed, and has not spread. Not all cancers have a stage 0. Stage I cancers are the next least advanced and often have a good prognosis (outlook for survival). As the stage number goes up the cancers are more advanced (bigger and more widespread), but in many cases they can still be treated.

    Other staging systems

    Staging systems other than the TNM system are often used for Hodgkin disease and other lymphomas, as well as for some childhood cancers. The International Federation of Gynecologists and Obstetricians (FIGO) has a staging system for cancers of the female reproductive organs. The TNM stages closely match the FIGO stages, which makes it fairly easy to convert stages between these 2 systems.

    Other, older staging systems (such as the Dukes system for colorectal cancer) may still be used by some doctors. If your doctor uses another staging system, you may want to find out if the stage can be converted into the TNM system. This will often help if you want to read more about your cancer and its treatment, since TNM is more widely used.

    A cancer's stage does not change

    An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed.

    For example, if a woman were first diagnosed with "stage II breast cancer" and the cancer went away with treatment but now has come back and spread to the bones, the cancer is called "stage II breast cancer with recurrent disease in the bones." If the breast cancer did not respond to treatment and spread to the bones it is called "stage II breast cancer with metastasis in the bones." In either case, the original stage does not change and this is not called "stage IV breast cancer." A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status.

    This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

    Still, restaging may be done to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. This often means going through the same process that was done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. If the cancer is restaged, the stage will be recorded with a lower-case "r" before the restaged categories. A restaging process that finds T2, N3, M1, for instance, would be written rT2, rN3, rM1. The stage grouping IV would be written stage rIV rather than stage IV, to note that it is different from the stage at diagnosis. The original stage at diagnosis always stays the same. Restaging is not often done in cancer treatment, but it is more common in clinical trials.

    What else can affect prognosis?

    Your outlook (prognosis) is affected by the type of cancer you have, but it is also strongly affected by the cancer's stage. For some cancers, another important factor that is considered along with stage is tumor grade.

    Grade

    Tumor grade describes how different the cancer cells look when compared to normal ones. The grade is assigned after the doctor looks at a biopsy of the cancerous tissue.

    Tumor grade is taken into account when making treatment decisions and is another factor that affects prognosis for some kinds of cancer. The grade of the cancer reflects how abnormal the cancer cells look under the microscope. Grading is done by a pathologist who compares the cancer cells from the biopsy to how normal cells look in the same area. (A pathologist is a doctor who is specially trained in diagnosis and classification of diseases by lab tests, such as looking cells under a microscope.) Grade is important because cancers with more abnormal-looking cells tend to grow and spread faster. Higher grade cancers (meaning that the cancer cells look very different from normal cells) usually have a worse prognosis, and sometimes need different treatments.

    The American Joint Committee on Cancer (AJCC) recommends the following cancer grading classifications:

    • GX Grade cannot be assessed
    • G1 Well-differentiated (the cancer cells look a lot like normal cells)
    • G2 Moderately well-differentiated (cancer cells look somewhat like normal cells)
    • G3 Poorly differentiated (cancer cells don't look much like normal cells)
    • G4 Undifferentiated (the cancer cells don't look anything like normal cells)

    The lower the cancer grade the better the prognosis. G1 cancers are linked to the best outcomes. G4 is linked to the worst outcomes, and G2 and G3 fall in between.

    There are problems with grading, though. For example, many different grade levels may be found in one tumor or the tumor grade may change with time.

    There are also several grading systems for different types of cancer, such as the Gleason grades for prostate cancer or the Kernohan grades for brain tumors. Each grading system divides cancer cells into those with the most abnormal cells, the least abnormal cells, and those in between. Generally, whatever grading system is used, the lower numbers indicate less aggressive cancers while the higher numbers suggest faster cancer cell growth and spread.

    Along with stage and grade, your outlook is also influenced by the treatment you get, your general health, and many other factors that your doctor will take into account.

    Finding out more about your type of cancer

    If you are looking for details on staging or grading for a certain type of cancer, you can find this information in each of our documents on specific cancer types. You can get any of these cancer site documents on our Web site or by calling our toll-free number below.

    Additional resources

    More information from your American Cancer Society

    The following related information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-ACS-2345.

    • After Diagnosis: A Guide for Patients and Families (also available in Spanish)
    • Surgery (also available in Spanish)

    National organizations and Web sites*

    In addition to the American Cancer Society, other sources of patient information and support include the following:

    National Cancer Institute
    Toll-free number: 1-800-4-CANCER (1-800-422-6237)
    Web site: www.cancer.gov

    *Inclusion on this list does not imply endorsement by the American Cancer Society.

    No matter who you are, we can help. Contact us anytime, day or night, for cancer-related information and support. Call us at 1-800-ACS-2345 or visit www.cancer.org.

    References

    Greene FL, Page DL, Fleming ID, Fritz AG, Balch CM, Haller DG, Morrow M, eds. American Joint Committee on Cancer Staging Manual. 6th ed. New York, NY: Springer; 2002.

    Yarbro CH, Frogge MH, Goodman M, Groenwald SL, eds. Cancer Nursing Principles and Practice. 5th ed. Sudbury, MA: Jones and Bartlett Publishers, Inc. 2000.

    Revised: 04/23/08

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • weety
    weety Member Posts: 1,163
    edited March 2010

    Thanks,that's interesting--I had never heard that before.  I have also never heard of grade 4 before (only grades 1, 2, and 3)  I wonder if this is new info and we are just starting to hear about it???

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • bkglenn50
    bkglenn50 Member Posts: 138
    edited March 2010

    I was first diagnosed as stage 2  1 yr later mets in liver but my onc calls it stage 4. its all confusing. i did have surgery though and they removed two of the three spots on my liver.

  • Meggy
    Meggy Member Posts: 530
    edited March 2010

    bkglenn50, please don't think too much about what you did wrong.  None of us did anything wrong.  We lived and then we got cancer.  Sometimes it spreads.  It is never our fault.  

  • Meggy
    Meggy Member Posts: 530
    edited March 2010

    How about a little summary for anyone just checking in

    low fat diet (33 grams of fat a day max)

    exercise minimum of 3 hours a week (I've been slacking lately)

    limit alchohol...this week I asked my brillian (I love her so much ) Stanford oncologist what else I can do and she mentioned limiting alchohol

    I say limit sugar although I don't think we have studies (PET scans work by putting some radioactive stuff in sugar solution because the metabolism of teh sugar substance is different in cancer cells.  I say don't give them too much sugar.  By the way I read that potatoes keep your blood sugar up really long...so I limit potatoes.  Diabetic guidelines give a lot of info. 

    Have sufficient D3 from food, vitamins, sunshine

    Check your D levels ladies!!!!!  I had already been taking 1200 of D3 per day and had my levels checked and they were still insufficient!!!  I talked to my Onc. and she said sunshine helps to synthesize the D vitamin.  You still need D from food and/or vitamins but need sunshine to help synthesize it.  

  • MsBliss
    MsBliss Member Posts: 536
    edited March 2010

    Tamlyn:  Every time I meet a forum member who was not told about the importance of vitamin D3 by their doctor I want to scream.  You should have your D3 levels checked and start supplementing until your levels are at least 60---not 30, which most doctors think is normal minimum.  If you have cancer then you need to have very robust levels.  Don't use D2 which is the prescription grade D and has been shown to not be as useable by the body.  I think you can read more about it at the vitamin D council website, vitamindcouncil.org. 

  • lbrewer
    lbrewer Member Posts: 766
    edited March 2010

    http://www.vitamindcouncil.org/

    Very good information.  check out the home page.  there is a  study starting this month which will reimburse you for the tests required to test vitD levels.

  • angelsabove
    angelsabove Member Posts: 363
    edited April 2010

    I just LOVE this thread....KEEP THE INFORMATION coming......

  • 5andcounting
    5andcounting Member Posts: 232
    edited April 2010

    Thanks so much for this thread...with my last chemo today (yea!) I need something to do to feel like I'm still fighting it actively. Exercise and limiting fat and sugar will certainly give me something to do!

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    Crs, Congrats on your last chemo!  I'm about three weeks from my last chemo now, and it is so good to know that I will not be slammed, that I can continue to heal now.  I had the most gnarly cold after my last chemo, and it is finally gone.  I've started taking my walks again.  I'm starting my gym membership up May 1st, it's been on hold.  I'm eating 70% vegetables and fruit, green juicing - I gained almost 20 lbs during since my bilateral masectomy and through chemo - since last October!  I need to get back in shape before my implants are placed.  The plastic surgeon likes you at your ideal, maintainable weight.  If you lose weight after the implants you can get extra skin and sagging going on.  Is your hair still growing?  No hair for me yet.  Wait for it... Wait for it....  My scans are mid-April.  I'm nervous, but can't see how there could possibly be any cancer cells left in my body after that onslaught.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010

    CRS - congratulations on finishing chemo!

    Violet - you are right behind and now in the homestretch.

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    Oh, I just reread my wording:  I'm three weeks out from my last chemo - it was March 18th.  I'd actually be getting chemo about now if I were still on it.  It's a great feeling to be done!

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2010
    Violet - in that case congratulations are in order!!!!Laughing
  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    Good to hear from you CRS and Violet..!  We have missed you!  Glad to hear that chemo is done for both of you!  Now it is time to recuperate from chemo..it should get better every day!

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    Thank you!  I am feeling better and better each day, definitely.  I had an ultrasound on my arm that had had a blood clot in it and it is gone.  No more coumadin for me.  My arm is still swelling, though, so I'll likely be sent to a lymphedema specialist.  It's funny, after chemo, lymphedema and many other things for that matter are just not a big deal.  Chemo would have been today if I were still on it.  I hope you are feeling better, crs.

  • Meggy
    Meggy Member Posts: 530
    edited May 2010
  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Interesting thread.  Thanks for posting it.  I had a recurrence 8 months after having a bilateral mastectomy for DCIS with widely negative margins???  Now I have IDC plus DCIS.  It hasn't been staged yet.  I'm waiting to get PETscan, but my lymphnodes came back clear.  my onco has been MIA for over a week.  I'm supposed to be seeing an onco at Sloan Kettering for my recurrence in a week and a half.  I'm also switching local onco's since mine doesn't give me the time of day.  This time I'm sure I'll have chemo and rads.  I was told definite for chemo because I'm TN. 

  • 11tyBillion
    11tyBillion Member Posts: 96
    edited May 2010

    I saw how some of you have been posting anti-cancer food and suppliment ideas (thank you so much!) and I was wondering if any of you had looked at The Cancer Fighting Kitchen by Rebecca Katz?  She used to cook for Cancer patients at a Cancer Care facility in California (I think it was CA) called Commonweal ...  the intro reads something like this :

    The Cancer Fighting Kitchen features 150 science-based, nutrient-rich recipes that are easy to prepare and designed to give patients a much needed boost by stimulating appetite, and addressing treatment side effects ... a step by step guide helps patients nutritionally prepare for all phases of treatment, and a full nutritional analysis accompanies each recipit ... this remarkable resource teaches patients abd caregivers how to use readily available powerhouse ingredients to build a symptom- and cancer-fighting culinary toolkit ...

    I still use the book weekly, and the only thing I have changed are where she adds lime or lemon juice, as now, that I am no longer on the "bad" chemo, those flavors are too much for me -- her recipies use a lot of wonderful non hot spices, which she uses very lightly ... so once you know how the recipe is supposed to taste, you can add more or less depending on your own personal taste... 

     I bought this book the week that I finished my A/C treatment (as that was the first time I felt human enough to start researching about the foods I should be eating, and oh how I wish I would have had this book at the start of chemo! 

     Being TN I want to do everything possible to keep this monster gone.   Keeping the total fat at 20% or lower is a challenge, but this cookbook really helps me do that!  Her recipies are also very anti-inflammitory, which is also supposed to help fight BC.  Here are some anti-inflammitory and cancer fighting foods, and here is the blog where I learned first about that Rebecca Katz book...

     The woman who writes that blog, Jennifer Griffin, is a 40 year old mom of three who was diagnosed in October with TN BC, and she is just starting radiation.  She is basically at the same stage in this whole process as we are.  She is also a FOX news correspondant, and her writing and her attitude are absolutely inspiring.  She has been all over the media getting it out there about the battle we are all fighting.  She is a force to be reckoned with!

    okay, I am done blathering ... I have been meaning to write about these things for several weeks now, but it has been so hard for me to find the time!

  • MsBliss
    MsBliss Member Posts: 536
    edited May 2010

    I found an excellent run down of exactly what the research shows re diet, exercise and lifestyle in terms of lowering primary and recurrence rates.

    It was written by Constantine who ran down all the citations and research references and puts it into a comprehensive reference.  I highly recommend everyone read this to fully understand the steps we can take proactively.

    I cannot post the link "hot" because this site won't allow it from my browser but it is at:

    nosurrrenderbreastcancer.org, forums, under The Cutting Edge, Lifestyle Risk Reduction.

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