Stage 2 Sisters Club

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Nisa, I'm glad you got to get away with your family - it sounds as though it was much needed.

    Mommado, Nisa's advice is completely spot on. It's hard to push back on the demands of everyday life (sometimes impossible) but if we don't find some way to fit in some self care as well it will catch up with us when we're least able to handle it - and least expect it. I'm sending some extra hugs for you to keep on hand and use as needed. :)

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    Mommado - thinking of you tonight and hoping things are going ok.

    Grandma - hope you enjoy your trip to FL.

    SoCal girls - anybody ready for a meet-up lunch? May is much-much easier/better for me than June, always.

    MJ - my dear surgery sister: We are coming up to 3 years NED. How are we going to celebrate?

    Ruth - excited about a trip to TX to meet up with you girls.

    Newbies - how are you doing?

    Hugs to all 💕

    Nisa
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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Other than the fact that we are in the middle of a bathroom remodel Shocked, I am good.

    How are you doing, Nisa?

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    I feel for you, Ruth. My downstairs bathroom has been at the beginning stage of a remodel forever 😊 Hope you finish yours soon!

    I am well. Very busy with work. Still a bit confused about a positive PET and my biopsy results. I am so tired of cancer talk that I may be making a mistake to not follow-up this unfinished issue more aggressively. What would you do in my place? Could a positive PET mean anything other than cancer? I have nothing left in me to research my own question.

    Thank you, Nisa 💕
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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    This is the main bathroom upstairs; we've pulled out the vanity and have half the flooring ripped up already, so it will HAVE to get done.

    Yes, there are other reasons a PET might be positive. This is from Livestrong.com.....the bolding is my own.

    Overview

    Positron emission tomography (PET) is an imaging modality used to acquire a three-dimensional image of the body. A pet scan is obtained by injecting a combination of a radioactive isotope and glucose. This imaging technique is most useful for oncology purposes because malignant tumors are very metabolic and rapidly absorb the glucose. Due to the metabolic activity and glucose absorption, malignant tumors are very evident on a PET scan, making this modality extremely useful in diagnosing and treating various forms of cancer. However, glucose may be absorbed by mechanisms of the body other than malignancy which could lead to a false positive study and lessen the sensitivity of the PET scan.

    Infection/Inflammation

    According to Jung Min Chang M.D., there are several non-malignant, infectious conditions that may lead to a false positive PET scan. Many common infections, both fungal and bacterial, could absorb the glucose component of the PET scan injection and generate a false positive result. Sarcoidosis (a condition of swelling of the lymph nodes, lungs and liver), and radiation pneumonitis (inflammation of the lungs caused by radiation therapy for lung cancer) are among the conditions that may lead to a false positive PET scan. Individuals who must undergo PET scanning should provide a complete, detailed medical history to insure proper interpretation of the PET scan images.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Another thing I found:

    Hot spots on a PET scan can be caused by things other than cancer. Inflammation, also sarcoidosis, an autoimmune disease that usually starts in the lungs. Infections and even arthritis will light up on a PET scan.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    I think if you feel good otherwise and the doctors have said to wait, then I'd what they say and give myself a break.......unless it will drive you too crazy to do so.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    (((Nisa))) I agree with Ruth, it could be many things lighting up. I know it must be hard but pushing the thoughts aside for now is really all you can do without going nuts. I am up for a May get together. It's a busy month but I am hoping for surgery end of June so it's a better month than June.

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    My email notifications frequently goes off by itself. Is this happening to you all?

    Ruth - thank you so much for taking the time to educate me. Yes, my very ill brother who happens to be an internal medicine physician said similar words, and then said "but you have none of those and BC mets are not uncommon to the thyroid." And those are the words that stuck with me. I am so busy during the day that a positive PET and continually growing BC markers are easy to ignore, but the "what-ifs" at night are not.

    Molly - thank you for your encouraging words. You surgery? Breast reconstruction? If so, I hope you love your implants as much as I did. Boy those TEs were rocks/weapons on my chest. Let's wait to hear from other BC sisters in the area and then plan a fabulous lunch or walk or whatever. Can't wait!

    Hugs to all sisters, Nisa
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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Nisa, first will be prophy mx of the right side. I had to take a step back and really think/pray about that decision. It is the right decision for me due to my genetic risks of a new cancer. Then will be bilateral exchange! I am NOT looking forward to another TE and fills but this one will only be weeks vs months.

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    Molly - I so completely agree. Get rid of that potential trouble! Who knows what could be growing there! My rigth had a 12.2 mm tumor (not a typo, it was 12.2) so deep it didn't show on any imaging and was missed on an MRI-guided biopsy. How about that for a false negative? My body hides cancer the way I hide certain unwanted fat under my clothing lol! By the end of summer, you will be a new girl - yay!

    Love it when notifications show up on my email 😎
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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    Molly - I meant 12.2 cm, not little mm. And I shared that not to scare you but to reassure you that what you will be doing is the right thing for you given your family history (similar to mine). Not to diminish surgery risks and pain... but whatever it takes to sleep at night again as we did before BC. Hope you are enjoying September weather in April!!

    Hugs, Nisa
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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    April 24 - just returned from celebrating 3 years since first BC surgery, my 3rd cancerversary! I did lunch with girlfriends and dinner with family. And wishing MJ, my surgery sister, who tomorrow celebrates her 3rd year as well, all the happiness in the world. Do a happy dance👠, and enjoy all the extra calories that such event deserves! 🎉

    Hugs to all, Nisa 💕
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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Congratulations to Nisa and MJ!!!!!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited April 2016

    Thank you Nisa & Ruth!! Glad you got to celebrate with your friends & family!!!!! Cheers Surgery Sister - and sending you hugs (((HUGS)))

    I will be indulging with my favorite sausage & giardiniera pizza tonight watching the Chicago Blackhawks take game 7Happy

    Time sure flies....and does heal wounds. Today is Happy Dance Day!! I woke up this morning, took a deep breath & smiled - happy to have made it this far and to feel good, despite a few tense times along the way - but it feels great to sleep good again and be in a comfortable place, completely enjoying life!!!!

    Hugs to all here!!!

    Mary Jane

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016

    Ruth - Thank you for always being there for me andso many of us! 🌷 We should start an online BC community award gala so that people can vote for you! From my earliest post, you have been an amazing source of support and education. And then we met in person, and I got to enjoy your fun and leadership nature. For all that, THANK YOU! 💐

    MJ - party on today! 🍕🍕🍾🍨🍰💥 Go Blackhawks! 🏒🏒🏒🏒🏒 💥

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Congratulations Nisa and MJ.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016

    Congrats to MJ and Nisa! Here's to many more, right?

    Nisa, if that issue is keeping you awake at night, why not follow up on it? You've got so much to deal with already that if you could eliminate even one concern it seems it would be worthwhile. Just my .02...


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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Thanks, Nisa! Happy Dancing with you guys today (also it is really cold here, so you have to keep dancing just to stay warm ).

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited April 2016

    I would vote for Ruth too!!!! You have always been a tremendous support and very positive!!! Thank you for all of your hand holding these last 3 years... I couldn't have done it without you Ruth & Nisa!!! I wish I could make this years trip but will promise to try to make it next year!!! If anyone happens to head out towards Chicago I'd love to meet you in person. Nisa I will keep you posted on our possible trip to CA in November...maybe we can meet up!

    Love all you wonderful ladies!!! 🍻🍻 to our health!!!

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  • Giazuc
    Giazuc Member Posts: 44
    edited April 2016

    Hey guys, I'm a breast cancer survivor who started a YouTube channel to keep my mind distracted from the anxiety from breast cancer. Thoughts of recurrence, etc...If you're interested in getting to know me more here is my link....


    https://m.youtube.com/channel/UClInmDWkbCeHM6XidqwcpSw


    A big hug to all my breast cancer sisters...

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    Glazuc - you are beautiful, with or without make-up! I am so sorry that you are dealing with BC at such young age. Looks like you found a fun way to distract yourself from BC. I got screen shots of a few products, will buy them and fully expect to look like you when I apply them LOL.

    MJ - Yes, keep me posted about CA trip.

    Molly - thank you. Your first year out coming up in July!

    Hopeful - thank you. I'm going back and forth on this. One side of my head tells me to relax and wait, and the other tells me to pursue more information. And then family members saying what you are saying. I wonder at what point people truly leave this behind once they cross the 5-year mark?

    Love to all, Nisa 💕

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2016

    Congratulations Nisa and MJ...and may you celebrate many many more!!

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    SoCal friends - i will be in Santa Monica on Monday, May 23rd. Anyone in the area that wants to meet up for coffee or happy hour, please let me know. I'm free after 3:30pm. Not the best weekday or time of the day for a meet-up but thought I would give a try.

    Hugs, Nisa
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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016

    Thinkingpositive - thank you for yourkind words. How are you?

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2016

    nisavilla..I am doing okay. Thanks so much for asking. I still have worries and I had thought it would get easier the further out from treatment I got but it's not getting easier. Seems I worry more. Any advice?

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Keep real busy; plan and do fun, interesting, engaging things. Do stuff that you have always wanted to do and never took the time (cooking class, learn a language, join a choir, start a Book Club, take up yoga, Zumba....whatever). If your days are full with good things, you don't have that much time to think about the bad. Of course, my big advice to anyone is to exercise, exercise, exercise. It is the biggest non-medical thing we can do to lower our chance of recurrence, as well as keeping one looking better (which makes you feel better), able to do more fun things because you are stronger, prevents a lot of other health problems too, and dumps all those happy endorphins into your system!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    Also, do some traveling. Being out of your normal routine; visiting family/friends and/or being someplace new & totally different is an excellent antidote for worry.

    And, 'retail therapy' .....never underestimate the power of a good shopping spree

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited April 2016
    Thinkingpositive - I value and practice the advice from Ruth. All the time. Distraction is a powerful tool. It even helps chronic pain patients with pain perception. At the same time, I think there is value to embracing reality, and embracing uncertainty and fear. Every one of us carries a different history. If you have lost people to cancer, your reaction to illness and loss will be different. And so on. And you are only a year + out! My advice is do wharever helps you without hurting you (as in execesive this or that). And if worrying a bit helps, as in keeping us alert, then do. Nothing wrong with that. But if worrying keeps you from living life, then that might be a problem. With all due respect for your screen name, I will share that I am really tired of the pressure the culture of optimism (as in "think positive"/ deny real feelings) has on cancer patients. I find it too intense around my SoCal life. There are some bloggers addressing this issue. Not sure if you deal with that. I hope not; it can be draining. The one thing I send for sure is a big hug and a reminder that I too worry. Nisa 💕
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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2016

    Nisa and Ruth..thanks so much for your advice and making me feel better. I try not to let it get to me where I can't function. I work full time and keep busy with that, I do vacation. Have 2 weeks planned at the beach and 1 week planned in Cancun (free villa again) with a close friend. Girl,s trip! And I will plan a trip with my husband at some point. I have three grandchildren I spend time with so I do try to keep busy. It's just always there in my mind! I guess if it starts to affect me doing things then I should worry. My fear is that I was not told very much about % and often wonder is it possible to never see this recur again or never somewhere else. That's generally what I have in the back of my mind. Some days it's okay some not so okay. But again thanks for being there, it does help

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