Radiation only, no chemo

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  • navymominohio
    navymominohio Member Posts: 24
    edited May 2013

    KKuziel--I sent you a private message. 

  • magnolia57
    magnolia57 Member Posts: 28
    edited May 2013

    paccools, thanks for your story- it does help to know that I'm not paranoid. There is a lot of ignorance about cancer in general,and a definite perception that it renders you incapable ofdoing your job. I think the initial adjustment to thediagnosis can make it hard to function,but once that's done, the work helps. I'm trying not to worry about it and just do my thing.

    Regarding oncotype kkuziel, I agree with the other person who posted about oncotype vs mammaprint. Oncotype is more acknowledged for its scientific rigor and research. I would crunch the numbers and see what you canlive with. The oncotype website has some good info including graphs for the various scenarios. You might look at the data for the positive nodes scenario too as a comparison. I had positive nodes and the recurrence rate changes a little....but even though the micrometastses don't automatically require chemo because the algorithm for the recurrence rate results in a tiny measure of benefit,about 5% in my case. You have to look at it, step away for a day or two,look at it again....discover how you really feel... This is all really hard- take care and follow your mind and hearts' instincts.

    You are strong.

  • kkuziel
    kkuziel Member Posts: 191
    edited May 2013

    Magnolia57, I have looked at all the charts and graphs on oncotype and agree that the benefits of chemo are small, very small. With you and the help of others, as well as my own research I think I am pretty sure I will opt out of chemo at this time. I'm most concerned that my MO will be "mad" at me. (can you get more pathetic than that?) this whole cancer thing has turned me into a mass of quivering insecurity, crying for no real reason (I used to consider myself a tough person, now I'm a total whimp)



    I'm looking forward to my appointment on Friday, which leads me to believe I've made up my mind. Then on to hormone therapy and no looking back. That's one thing I'm sure of. I will never do the "coulda, woulda, shoulda" thing. That is a bigger waste of energy than worry, and god knows I've wasted enough time with that lately to last a life time.



    I am so grateful to have a sounding board for this kind of stuff. My husband has been great and will support anything I decide, but it's great to talk with women who are in the "trenches." One of my students the other day stopped me after class and said she had noticed that I was looking worried about something again (pretty amazing for an 8th grader) her comment was "whatever is going on you'll make the right decision, you haven't screwed up too much yet." high praise from a middle school student.



    Thanks for all the imput. I just wish our doctors looked at these sights once in a while. They'd be amazed at all the things they could help us with that aren't purely medical.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited May 2013

    kkuziel - Glad that you have determine how best to proceed and looking forward to Fridays appointment.  It is such a relief when we have OUR plan :)  There is much comfort and peace...

    Luv your student's insight!  Trust yourself, pick your path, dont look back and second guess yourself...enjoy life.  Walking backwards you miss the adventure.

    (((hugs)))

    Cindy

  • kkuziel
    kkuziel Member Posts: 191
    edited May 2013

    RMlulu, I just looked at your stats. I had thought that I was starting hormone therapy late. But I see you were diagnosed, had surgery, and started radiation at nearly identical dates. I was afraid the delay after I finished rads (for the other test ) was a delay. But if he gives me a script on Friday for hormone therapy I'm starting right about the same time as you will.



    I do feel pretty sure about my decision. Everything I've found on chemo says ideally start as soon as you can, not 21 weeks out like I will be from first surgery. Have seen a study that showed after 12 weeks it's not as effective. Seeing as I'm 90% hormone receptive I figure the sooner I start starving anything that might crop up the better.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited May 2013

    Kkuziel - my MO said to take a break for a month. ER/PR 95%

    So glad I'm feeling so good. Read on here how exercise...walking&weights help reduce risk also. I've been walking 2 miles and stretching and lifting light weights...makes me feel so much better and in control. Gonna pound those bones if I'm gonna take the pill. MO said my swimming and kayaking don't count so hitting the ground or dance floor...but don't expect to see me on DWTS ha!

    Met with certified nutrition who gave me food plan anti cancer anti hormones so here I go. And MO said we would find the right HT pill ...no worries:)

    Best Wishes to you...luv the peace that comes with a plan in place...onward warrior!

    (((Hugs)))

    Cindy

  • JPH
    JPH Member Posts: 35
    edited May 2013

    Wow - I wish I could find a certified nutritionist to talk to!  I teach high school students nutrition - but this is beyond me.  I talked to the hospital nutritionist and she did not shed any new light!  I don't know why we don't get nutritional advise from the start of this process!  Cindy, I would love to hear about some of the things you learned there.  I too have been told to get walking - I hate to exercise and have been told my stationary bike does not count - I bought a weighted vest to wear once I get into a walking routine.  The end of the school year is not the time to take up anything that take more time!! I will have to get hooked on walking over the hot Virginia summer!  So glad you got good advice!!

    Jayne

  • RMlulu
    RMlulu Member Posts: 1,989
    edited May 2013

    Hi JPH



    The mantra at the BC Center was walk baby walk! 50% reduction which is better than rads or HT and there's NoFear! I'll pound the ground get a pedimeter to count your steps...I like walking and working out so no big deal...just do it! Knees don't jump rope or jog ...but if I'm going to DO HT then I'm definitely going to walk- NO SEs yippee!

    The Cancer Nutrition Center Handbook Carolyn Katzin. Www.cancernutrition.com

    Anti Cancer check this site for recommend books

    Harvard Cancer Exercise Handbook and Mediterranean Diet and than vegan no soy no gluten by NP.

    I cycle my carbs- Wed/Sat are carb up days Crack the Fat Loss Code Wendy Chant...

    but vegan 2-3 days a week, whey protein, salmon 2-3 days a week no dairy except organic Greek yogurt and all fruit low glycemic index

    There are some great anti estrogen diets and foods so its all choices and what works for you!

    But exercise is very doable...much better when thinking I am taking HT so move it! Is my mantra:) figure BC wake up call so no sugar... Limit of no more than 15grams with any meal...yeah it's an adjustment...but I'm worth it!

    Good Luck

    Cindy

  • kkuziel
    kkuziel Member Posts: 191
    edited May 2013

    Just had a good appointment with my RO. He indicated the second test I had is not used very often, and although he could pose no guarentees, (who can) he feels my cancer is not a huge reoccurance threat. It could, but far more likely not too. He called my cancer "good actors" not sure if something is lost in translation, or if he knew I am active in community theatre, but it was encouraging. He said if I was ready to make a decision than just do it and get on with things. He said he thought the stress I was putting on myself was worse than many other things I could or could not do.



    One bummer of the meeting is that he's not recommending I use deodorant yet under my arm. Said skin is still too new, and there was still some swelling, all normal, but thought I should be cautious for another month. So I guess I'm going to have to avoid people when I'm a sweaty mess, or stand so they only are on my left side.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited May 2013

    Good News Kkuziel!



    Happy Dance for you! Our dx is same so good to hear we'll live ...counting on 100!

    Shaved today...guess I will wait a bit longer for deodorant ...after all these weeks who cares ha!

    Restful night...you did it:)

  • JPH
    JPH Member Posts: 35
    edited June 2013

    Cindy,

    Wow you are full of good advice.  Just seeing this - life at school is almost over so I have had time to check back to this site.  I wish I loved to exercise - I hate it.  But will get into the routine - I have ridden a exercise bike but walking is so hard here where it is so hot in the summer and the ticks -- just worked in the yard and as I am writing this I just got one off the laptop!!

    The sugar is also hard to cut back on -- I love fruit and dark chocolate!   I will limit - but not cut out - they both offer good trade offs for the sugar levels.

    I eat very little meat and have not for years -- I do eat yogurt - so I am doing somethings and do watch all the "bad cancer hormone feeding foods"  - I do miss my glass of wine several times a week.  Was told by the MO that the positives of wine were strong enough not to completely cut it out of my life.

    Thanks for all your support!  You do so much for so many on the discussion boards!!

    Enjoy each day!!!

    Jayne

  • kkuziel
    kkuziel Member Posts: 191
    edited June 2013

    Well two weeks into taking of femara and (knock on wood) no SE's that I can see. I was worried about the joint pain (I'm a "professional worrier") so I decided to work like a mad man in my garden for the past week or so. Joints are in pain, but they always are when I do that much gardening, so I'll never know if it's from that or the pill. Today, because I have little gardening to do, the dog and I are going for a 3 mile walk. going to get that into my routine so that when school starts back in the fall I will have that established and will put that ahead of working until 8:00pm every night. Some lifestyle changes that I need to do, not just to prevent SE's, but because it's time to put me first for once in my life.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2013

    Kkuziel - your garden must be beautiful and pup happy! Yeah, 2 weeks on AI and no SEs!

    I'm on my 3rd week one pill at a time...wiggled into my 1st Zumba class today...my hips don't move ha! But had fun...wise to start new routine over summer so habit is set and your body gets the rush from the exercise...

    Think putting ourselves and our healing first is important!

    Here's to you...warrior.:) and a calm uneventful 6 mos...yeah Nov appts & mammo, but this time knocking out of the park:). All clear!

    (((Hugs)))

    Cindy

  • kkuziel
    kkuziel Member Posts: 191
    edited June 2013

    RMlulu, It's interesting how your timeline and mine continue to coincide. My mammogram is in November too. Thought that might be late, but I guess I'm right on schedule. After the amazingly poor start had to all of this I tend to question everything when it comes to the timing of things. My journey all started with a three week lag from my OBGYN not getting back with me about the ultrasound. I'm now like a dog with over the timeliness of things.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2013

    Kkuziel - yes, our profiles are similar.

    Enjoy 6 mos of healing. I think we just go into fight mode after dx...push thru...and then we are done and go ahhh! PTSD. My BC team gave option to stagger appointments so I saw someone each month, but I determined that I feel great, fought hard, and can wait until Niv to see their faces:). Grateful for their care.

    Enjoy your summer and fall...well deserved!

    (((Hugs)))

    Cindy

  • LaurieParr
    LaurieParr Member Posts: 270
    edited June 2013

    Hello everyone,

    I seem to be the only one on this thread who does not have invasive cancer, but I can relate to everything that you all are saying. I too have felt such "guilt" about not having to have chemo and have experienced a feel of a sort of "competition" with people who want to tell me about someone they know that has a higher stage cancer than me. One of the first questions I am asked is "What stage are you?" When I respond, I get an, "Oh...you will be fine....it's no big deal compared to someone at a higher level than you."   I feel so guilty, ashamed and made to feel that because it is "ONLY" DCIS, that it really isn't BC.  :(   I know the truth, but it is just hard not to feel that way.

    I will be receiving radiation soon. I have my first MO and RO appointments in the next few weeks and I am curious about my Oncotype score.  After two surgeries in two weeks, my margins still were not clean and my BC is at the skin and chest wall. I find that interesting as when we started this whole process, they felt it was contained with a good amount of margin around it.  BC is so sneaky.  I also will most likely be put on Arimidex and so the conversations about the future of what radiation and the Arimidex will do to me are helpful.

    Thank you all for being a support of venting and validation. BC can be a very lonely Universe to live in in the "normal" world.

    XOXOXO

    Laurie

  • corky60
    corky60 Member Posts: 726
    edited June 2013

    My MO never suggested having the Oncotype done for me.  Maybe it was because there was no malignancy detected from the lumpectomy.  They think that the stereotactic core biopsy removed the lesion.

    As far a telling people I have told alot of the neighbors and they have all been kind.  As a matter of fact one brought me a pink vase full of peonies with a pink "pink cancer ribbons" scarf tied around it.  Turns out she used to do  "for the cure" fundraisers at her house prior to the economy going sour.  I just hate all things "pink cancer ribbons" since they started turning up on so many things, unhealthy foods, etc.  But her gesture was so, so kind and generous.  And I barely knew her.  What a lovely lady.

    My hairdresser on the other hand acted very strangely.  We often have nice chats about geneology but he was so cold.  He couldn't wait to get me out of the chair.  I will give him the benefit of the doubt and assume he was having a bad day.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited June 2013

    Corky60,

    Peonies are my favorite! How lovely!  

    I am a hairdresser and I cannot IMAGINE making one of my clients feel the way you were made to feel. I am so very sorry that you went through that. My heart is sad about that.  You are kind to give him the benefit of the doubt. I hope that you are not made to feel that way again.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2013

    Hi Laurie - We all have cancer...theres no just a little cancer...like a little pg...we have cancer...it is a chronic disease...we are strong when we stand together and support each other!Sorry that anyone would make you feel like your dx makes it less...cancer is cancer...ugh!      Or that our tx - lumpectomy and rads - makes us the cancer less too!                          Sharing some of my avatar BDay crumbs and icing ...lol a new year:D

    We are in this ALL together :)

    (((Hugs)))

    Cindy

  • kkuziel
    kkuziel Member Posts: 191
    edited June 2013

    LaurieParr, I too had to have two surgeries and it was all because of the large portion of DCIS found in the tumor. My surgeon said you need bigger margins around DCIS than you do invasive cancer. He went right to the chest wall in the second surgery. That second surgery showed no evidence of cancer, so for me, in some ways it was reassuring to have a second surgery. I felt more confident that going into radiation we were doing a precautionary mission, not tracking down "escapees."



    I didn't spend any time in the "guilt" chair. I find that to be a waste of energy, and a cancer diagnoses takes enough energy as it is. I figure the people around you don't spend a great deal of time feeling guilty because you have cancer and they don't. I'm sure they are grateful. So that's the attitude I took. I'm grateful not to have to deal with chemo, I have lots of respect and admire those that have done it and come out the other side. But I doubt they want us to feel guilty either.



    There is always someone better off than us and always someone worse. Probably the best thing we can do is just deal with our circumstance and live our lives. Easier said than done of course.



    Hopefully they will find the solution to your margins, or perhaps you will solve that through radiation. Best of luck.

  • LaurieParr
    LaurieParr Member Posts: 270
    edited June 2013

    Cindy and kkuziel,

    Very well said ladies. Thank you for the pep talk. I feel so much better now.  :)

    Love and peace to you,

    Laurie

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