Let's start a group!

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Replies

  • fancyladyJeri
    fancyladyJeri Posts: 1,319 Member
    Hello all,

    I haven't checked in for awhile. My C Day as I call it is June 6th, 2011 when I was diagnosed with breast cancer. I am doing well.. Determined to keep the weight I lost off and be healthy. Lots of good tips in this forum. Thank you GORGER for starting this.
    jeri
  • marsha_62
    marsha_62 Posts: 2 Member
    Hello! A little self history- I am a 6 year survivor of BC. I opted for lumpectomy which ended up being plural. :) I had chemo and lost my hair and a full round of radiation. During that time, I got an infection at the surgery site and was hospitalized and pumped with antibiotics for 3 days. I took Tamoxifen for the 5 years and now my doctor feels it in my best interest to continue on with medication. I tried Arimidex but I ached too much so now I am on Aromasin along with aspirin regiment and Zantac. . I am doing better with that but through it all I gained the weight. I had lost 27 pounds on Weight Watchers but it kept fluctuating. I lost my motivation. A friend recommended MFP and so here I am determined to lose another 20-25 pounds.
    I saw this group and felt finally someone can relate to me and my situation. Hello camrades!
  • Gorger
    Gorger Posts: 100 Member
    Hello Marsha
    Thank you for joining our group. We are here to support you! MFP is a great way to start.
    Feel free to friend me if you need some motivation.
    -Gorger
  • cleppie
    cleppie Posts: 1 Member
    Hello.

    My first post, though I've been on mfp since January. I am a 33 year survivor of breast CA. I was given 9 months to live when originally diagnosed. June is the anniversary of my predicted 'death.' I believe I've outlived my original doctors. At the time, I had a lumpectomy, chemo and radiation. Never put on any anti-hormones or other post chemo drugs -- other than steroids for pain. I have, over the years, been on steroids several times, some related to the radiation but not all. Diagnosed with lymphedema 2 years ago. I also have fibromyalgia and arthritis. I've also had a few pre-cancers here-and-there, after the big one, but always caught early. Probably have the most mammogrammed boobs in the world ;)

    Never weighed above 118 until CA and the steroids. I've lost and gained ~45 lbs thru WW at least 4X since chemo. I could blame the steroids, but really, it's still calories in -- calories out.... I'm thinking the exercise and food diaries will make the difference this time. I'm determined this is the last time I will need to lose weight. I've always (post CA) used illness as an excuse -- no longer. Plus I seem to have become addicted to walking. I'm now doing squats, situps and dumbbells -- which I never did before...

    I plan to never stop using the diaries, even once I reach maintenance.
  • mcfo1967
    mcfo1967 Posts: 1
    Hello! I am also a breast cancer survivor. I was treated from December 2009 to July 2010, and I am still having tamoxifen.
    I am Brazilian and I am spending a year (from Jan 2013 to Jan 2014) in Tucson-AZ.
  • pjholcomb
    pjholcomb Posts: 55 Member
    What a wonderful attitude you have, cleppie! I am a two year survivor and have been told many times that your attitude can save your live. It is that important. So thankful for your success in beating cancer. You give me hope!!
  • pjholcomb
    pjholcomb Posts: 55 Member
    How are you doing mcfo1967? I am a two year survivor so I've been there. Hang tough girl!
  • crudd123
    crudd123 Posts: 244 Member
    Hi, I just found this group! I was diagnosed with a rare form of breast cancer called a spindle cell sarcoma. This is called cancer of the connective tissue and there is nothing they can give me to stop it from spreading. It spreads by the blood. Chemo would only help 10% and could damage my heart and bladder so we opted for surgery and radiation. Had 2 surgeries in January within 2 weeks of each other as they did not get clear margins on the first surgery. That was a killer. Went through radiation in March and April. Just started Curves trying to get back into shape. Only gained 8 pounds during treatment and have lost those already. I'm scheduled for a cat scan of my lungs August 1, 2013. The doctor said this will be critical to check me every 6 months for the next 5 years to make sure cancer doesn't spread. The next place the cancer would go would be my lungs. I'm just praying and I have a whole bunch of friends and family praying it hasn't spread. Had cat scan in February and my lungs were clear. Took the summer off from work to just have fun and run around with my mom and sister. Have to go back to work August 2, 2013.
  • SuzieQ430
    SuzieQ430 Posts: 44 Member
    Welcome to the group, crudd 123. You are one tough cookie! Hugs and prayer to you for a healthy recovery. Enjoy your time off--you deserve it.
  • mbryanlpc
    mbryanlpc Posts: 100 Member
    Hi everyone. My name is Mary, I was diagnosed on May 3rd of this year, stage 1. I have had 2 lumpectomies, and was very lucky, it did not affect the lymph nodes. Also, the gene testing scored low, so that is good. I am on Tamoxifen, and after finding you guys earlier today, I called my eye doctor. She is going to see me every 6 months for the next 5 years to make sure my eyes are going to be okay. I started radiation a week ago, have to go for 7 weeks. I am tired, sick, grumpy, you name it! The nurse said that my continuing to work may be contributing some to my exhaustion. You all are so brave! I feel so scared all the time. I know in my head my prognosis is good, but keep feeling like my time is short. How do you guys deal with the fear? I asked for counseling (I am a counselor myself, and do recognize when I am not coping well). I am waiting to get someone to see that I do not know. Hard in a small town. I am being so mean and have no patience!! Anyone else feel this way?
  • hiking3
    hiking3 Posts: 3 Member
    Is anyone still doing this group?
  • hiking3
    hiking3 Posts: 3 Member
    I am a counselor too. I have breast cancer.
  • Gorger
    Gorger Posts: 100 Member
    Hello Hiking3.
    Yes, I am still moderating the group. It would be lovely if you started a topic. I welcome you to post something.
    My oncologist told me that those that belong to "groups" live longer for some reason, so...let's do it! I'm excited to hear what you have to share.
    Signed Gorger(well...no more, I'm at my goal weight. Yahoo!)
  • Gorger
    Gorger Posts: 100 Member
    Hi Mary.
    I am glad you are getting your eye doctor to check your eyes while you are on the Tamoxifen. It did permanent damage to my eyes. I now have cataracts and I had angle closure glaucoma caused by the cataracts that were likely caused by the Tamoxifen and I was about 2 weeks away from going blind. I had to have laser surgery to stop me from going blind. ( I am not the usual case so don't worry too much about it ) but make sure that the person who checks your eyes has the right equipment as my optometrist first missed it. Only my ophthalmologist found it. Thank god!
    You mentioned that you feel grumpy and exhausted. Those can be symptoms from the Tamoxifen. Personally I think Tamoxifen is like the old birth control pill. In the 1970's the Doctors prescribed a huge dosage. I personally believe that the dose of Tamoxifen is too strong. They give the same dosage for a 300 lb. woman as they give to a small person. My oncologist asked the pharmacist to give me two smaller dose pills a day, so I took one in the evening and one in the morning and it helps stop the "crankys". It's easier to take and doesn't give you the big cranky pill once a day. I looked up some Italian studies that say a lower dose works so I wish they would do studies on lower dosages. I am going to talk to my oncologist about that soon.
    I then took Letrozole which may have caused me to have a stroke. I am not lucky with drugs. I had trouble with balance and speech . It has taken me months of working out at the gym to get back to normal and I used hand drumming to get my cognitive skills back. It's been a nightmare for me.
    You mentioned being scared all the time and feeling like your time is short. We are living on borrowed time - luckily we were able to catch our cancers in time so I am very thankful to have additional time in my life. If you look at the old graveyards from the 1800's, most people didn't live past 30. It's only in today's time that we have expectations of living to 72. I try to turn it around and rejoice that I have today to be in the world and enjoy my kid. It's an extra day that I wouldn't have had if I was born 50 years earlier and had the same problem, with less treatments available.
    The trick is this: Ask yourself this: "What would I do if I didn't have this cancer." And then do it! Make a bucket list of all the things you would regret if you were lying in palliative care and start working on them. It will keep you so busy you won't be able to have time to worry. I have parties, travel. Every time I have another scare I am reminded of what is important to me- and then I do it.
    We are all going to die regardless of cancer. People just have their heads in the sand about it. The only difference is that we have the insight and experience to know differently. Now, with that knowledge, what are you going to do about it?
  • SuzieQ430
    SuzieQ430 Posts: 44 Member
    Thanks Gorger for all of your advice. I meet with my oncologist in November to discuss Tamoxifen and get put on it. I am scared at all the possible side effects of it. I already have cataracts, so I wonder how quickly I will need surgery once I am taking tamoxifen. I am glad that I read your information about splitting the dose up into 2 a day pills rather than 1 pill a day. That is something I will have to discuss with my doctor when I see him. I don't want the "crankys".

    I have found that because of my cancer I am doing more things now than I did before. I guess I finally realized how short life is and it was passing me by. You are right, if you keep busy, you don't worry about it. It is when I am not busy that the worry creeps in.
  • Gorger
    Gorger Posts: 100 Member
    When offered a drug or a treatment, I always ask what my statistical increase in life expectancy is. Each person is different and they can calculate the benefit the drug will have. They won't always tell you unless you ask. I ask because I want to know- before I take a drug or treatment- so I can weigh out the risks verses the benefits. The half pill in the morning and the half pill at night is WAY better.
    Another way to fight an estrogen receptive cancer is to lose weight.
  • mbryanlpc
    mbryanlpc Posts: 100 Member
    Hi Gorger, Hi everyone, Hi Hiker, fellow counselor :) I am so relieved to see you guys back. I was starting to worry this group had broken up. I am doing better now. I started taking Effexor, which has 2 benefits, helps the depression, and helps the hot flashes caused by the Tamoxifen. I am emotionally better, almost done with my radiation, just 2 doses left!! Last week, all the skin came off the radiated area, very gross, kept me home a couple of days. But, I am starting to see real healing now (they are doing the last 8 doses of radiation in the scar area only, allowing the rest of the skin a chance to heal). Gorger, your advice is so true, and my main goal is to get to see my daughter as soon as is humanly possible. It may have to be Thanksgiving (she lives 8 hours away), but it is happening soon. I talk to her daily - trying to get her to follow through starting mammograms this year (she is 28). Since I am under 50, and her paternal grandma died from stage IV breast cancer, they want her to start now. She stays busy, but my daily nagging will get her there :) Another thing I have done that I love is, I went Halloween costume shopping. As of last Wednesday, I have lost 61 pounds!! So, this year, rather than hiding my fat, I am showing off my new physique, and going to be Supergirl!!! :D Anyway, I hope you are all well. I will check more often. Again, so relieved you guys are back!!!
  • Gorger
    Gorger Posts: 100 Member
    Thank you for keeping in touch. It sounds as though you may want to consider getting checked for the BRCA1 or BRCA2 gene if you are worried about your daughter and you have breast cancer in your family. I had genetic testing and apparently don't have the genes.
    Stats show that Mammograms do miss a certain large percentage of cancers. Isn't it approximately 17 to 23% that don't show up?
    Mine didn't show up either time. Apparently if you have dense breasts, it doesn't always appear on the xray.
    It might be beneficial if you tell your daughter to check herself manually. So many people rely only on the Mammogram and they don't check themselves by hand. When my lump didn't show up on the Mammogram my doctor said I had nothing to worry about and when I insisted on a biopsy and he was wrong, it was a big surprise for him.
    I find a good alternate way of manually checking is to do that Yoga position called "down dog" and let everything hang downwards - then you can feel for lumps better than if you are always lying flat on your back. It's not an easy manoeuvre but you will figure it out when you try. It is amazing, you can feel every little thing that way.
  • SuzieQ430
    SuzieQ430 Posts: 44 Member
    Gorger, thanks for the advice on the downward dog position for examining breasts. I have dense breast as well and my cancer did not show up on a mammogram, only an ultrasound. It took the doctor almost a year to find my cancer, and by then it had spread to the lymph nodes.
  • Gorger
    Gorger Posts: 100 Member
    Wow!
  • mbryanlpc
    mbryanlpc Posts: 100 Member
    That's a really good idea. I am starting yoga class soon, so will figure out if I can do it. Thanks :)
  • TBYessa
    TBYessa Posts: 1 Member
    Hi, all! It's been a long time since anyone posted so I'm going to assume you're all in a groove and loving life. I was diagnosed in 2018 with Triple Negative Breast Cancer and finished treatment that November. I have to say it feels like a movie I watched and not real-life. I think I compartmentalized the situation to power through it. My son was 3 yo at the time and I didn't want to believe it to be true. I've done okay since then, but never really got the extra 15-20 pounds off. My bloodwork was a little haywire the past year so my onco started testing for tumor markers...one of the markers is elevated and now I'm back to anxiety. I've had a PET scan, brain MRI, and CT scan of chest and abdomen, but my onco said it takes a million cancer cells to clump together to show on a scan. I have to get my mind right and take responsibility for my health. I was on a lower carb way of eating and the tumor marker went down a smidge so I want to follow that route and see how it goes. I've had a blip in my accountability after we went to Hawai'i for a week and then on spring break to see family. It has been difficult since I've always used food to soothe anxiety and stress. It's always something!