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  • Angtee15
    Angtee15 Member Posts: 209
    edited December 2015

    Thanks Kayak and Notdoneyet! I appreciate it:)

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  • Mamiya
    Mamiya Member Posts: 432
    edited December 2015

    Angtee, I also wanted to say that I am not sure how necessary the MRI is for non-IBC cases. There is such thing as an "open MRI" that isn't the little tube thingy, maybe at a different location or facility you could be sent out to, but I have no idea if they can do the breast MRI in that or if that part of the machine would be a certain fixed size so would still not accommodate a larger patient... Worth asking I think though. Oh, If you would make your diagnosis and treatment "public" on your profile we would be able to see that and it may make it easier to understand what you are dealing with and allow more informed comments.

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  • Angtee15
    Angtee15 Member Posts: 209
    edited December 2015

    All this time I thought I had my dx and chemo plan public...here you go Notdoneyet


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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2015

    Ang, don't worry about not having the MRI. You might ask if there are other diagnostic tests that they can do, like the CT with contrast. This uses a different machine, and I have found relating to the claustrophobia, if I put a wash cloth over my eyes (so I cannot see even if I open my eyes) does the trick. I even bring one from home, in my purse, in case there isn't one handy. It WORKS! My best wishes to you.

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  • PeggySull
    PeggySull Member Posts: 686
    edited December 2015

    To those newly diagnosed and starting treatment: I started chemo in early December 2012 and by Christmas I had lost most of my hair. I was feeling terrified and so sad. An in-law who had breast cancer a few years earlier than I did, sent a simple note saying that she knew this Christmas would be very hard but by next Christmas I would be amazed at how positively different I would feel. Well that Christmas came last year and she was exactly right. This Christmas I was back to my pre-cancer self, even stronger for surviving treatment.

    I pass this prediction on to you who may be struggling with diagnosis and treatment this holiday season.

    Hugs,

    Peggy

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  • Allydp
    Allydp Member Posts: 520
    edited December 2015

    Thanks so very much everyone. Still no word yet. My husband has taken over communicating with my onc's office as I'm too frustrated with them. All we know is it's in their hands as well as the radiologist's hands and we're waiting for everyone to look at it. They ruled out a clot at the ER but didn't do an echo. My chest still hurts pretty bad. The pain moves around. It's sometimes right in the middle of my chest or on either side above my breasts and radiates to my shoulder blades. It's sudden and sharp and comes and goes throughout the day. Very similar to the rib pain I've had since chemo. I'm not quite sure what to do. I don't have a cardiologist I can call and schedule an appointment. Can't get my onc's office to call back. I suppose I could call my PCP but he doesn't handle any of my cancer stuff so that seems weird. My ER copay is $150 so that doesn't seem like a good idea either, and since I was just there I don't think there's much they will. They gave me a handful of norco that was helping but I'm out.

    I enjoyed Christmas with friends and family, but now that Monday is here and I have nothing to mask the pain, I'm going down the worry hole again, especially with another long holiday weekend approaching. Between my joints, my bones, the pressure in my breast, and now this chest pain, I'm at my wit's end! The few days of norco I had really opened my eyes as to how much pain I live with on a daily basis. It was pure joy to be pain free for a while.

    Anyway, enough of my crabbing! I second you, Cocker! I'm so thankful for all of you and hope you all had a wonderful Christmas with loved ones!

    I'll keep you guys posted. :)

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited December 2015

    UGH Ally!!!! I have been waiting and waiting to hear about you... this is not the news I wanted to hear. Sorry but I wanted to hear you have bronchitis or something.... When they initially found my spot on my lungs, I was told it is very common for people to have them. So, don't get crazy in the worry hole. Fingers crossed for bronchitis :)

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  • Allydp
    Allydp Member Posts: 520
    edited December 2015

    Thanks so much, Curly! It does give me a ton of peace of mind knowing how common they are. What sends me in a panic though is that it's new. My last chest CT was in May and it wasn't there. I haven't had any sort of chest cold, bronchitis or anything since then that would explain it. And I'm not sick now. I don't even have a cough, except when this pain comes it does sort of make me feel like I should cough. It's hard to explain.

    I keep trying to think of anything new I've taken or am doing. I switched from Ambien to Excedrin PM and that's the only thing. But I've gone off Ambien lots of times and never had a problem. And I can't see how Excedrin PM would cause chest pain. The only other thing I can think of is maybe my thyroid is off (I take Synthroid). I just had a draw a few months ago but who knows!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited December 2015

    Ally, is the pain kind of right by where you would think your bronchial tubes go off into your lungs? Because if it is, I had that, and weirdly enough it turned out to be tight chest muscles! Fingers and toes crossed for you!

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  • SA8PG
    SA8PG Member Posts: 371
    edited December 2015

    Ally I am so glad you posted. I've been thinking about you a lot. I will continue to pray and send you lots of love accross the miles. I hate that your hurting. :((((

    Stay strong & try to think positive thoughts. Praying it's nothing!!!!!

    Much love.

    G

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  • Allydp
    Allydp Member Posts: 520
    edited December 2015

    Thanks, Littleblue and G!

    Little blue - yes it's right around that area on both sides right on top of rib bones. I can't really tell if it's bone or lung pain though. Sometimes it even radiates into my armpits. Part of me has always wondered if I have some unknown neuropathy type pain from chemo in my bones...like a pain syndrome of sorts. Maybe I'm grasping at straws, but with all these unexplained pains who knows. I desperately need to start exercising on a regular basis.

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  • greenae
    greenae Member Posts: 540
    edited December 2015

    Ally

    Hi! I am thinking of you, too! Yes! Go back to exercising. I swear an hour on a Spin bike and some weights make me feel like my old self. Your pain description does sound like muscle/nerve pain, and part of these strange feelings we get after what we've been through. I am sending you healing Hugs!

    Tomorrow is one year since my lousy mammo. One down, two to go. Healthy futures for all of us!

    Love,

    Arlene

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited December 2015

    Ally, I was thinking lung mets. I had a feeling like I needed to cough all the time, but it was a dry cough. I was an inch from calling my MO. Then, I got a massage and it went away. Not even kidding.

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited December 2015

    been following all posts, ally could it be a form of costochondritis? No exact symptoms but then again our/your chest anatomy is not typical. Inflammation of the cartilage between ribs and sternum and can be accompanied by inflammation in other associated areas

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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2015

    Ally, I wish I was a medical person, so I could help put your fears at ease with all my smarts. But as it is, I am not. But I do agree with Lisa, I am thinking some kind of inflammation, or like you mentioned before, some chemo related neuropathy might be happening. It literally makes me sick at my stomach to know you are hurting, I want comfort and peace of mind for you so badly. Thinking of you with warm hugs.

    Peggy, your post was so lovely., thank you.

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  • slv58
    slv58 Member Posts: 1,216
    edited December 2015

    Ally, I'm thinking of you and hope you get answers soon. Inflammation sounds like a good possibility and I think very common with everything we go through. It's so easy to think the worst but it also gets tiring, we all need to remember that sometimes it's just a simple explanation- I know how hard this can be but as my daughter keeps reminding me, worry is a useless emotion. She is right, it doesn't solve anything. I just had my first 4 month post chemo check up and complained that when I take a very deep breath I feel a kind of rawness that almost makes me feel like I want to cough and my oncologist said that is pretty common after having rads. No scans needed. It made me feel much better and somewhat mad that I had been secretly worrying about it for awhile. I hope that you get a similar explanation. Hugs hon- we are all with you!

    Shari

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited December 2015

    Ally, I'm so sorry you're still hurting! I am praying for you and that you get some answers soon! Norco is awesome stuff. Can you get a refill? Or ask for some Hydrocodone? Hang in! We're waiting with you! (((((HUGS))))

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited December 2015

    Ally....fingers and toes crossed for you. Hoping you get good news. ((hugs))

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited December 2015

    Good morning Ladies & Gents.

    A little while ago I was celebrating 3 years free!!!

    Well now I am "shaking in my boots". Have been to see PCP & have ultrasound of abdomen scheduled for tomorrow. Stomach is sore & a lot of gas & heartburn. Lower tract fluctuating between constipation & diarrhea, also with gas. Both areas are sore to the touch. Having headaches also. Am going to the "what ifs" in my head. The not knowing is the worst.

    Anyone have any similar symptoms? Please keep me in your thoughts.

    Marsha

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited December 2015

    Ugh Marsha! In my thoughts and prayers. Hoping you just overindulged during the holidays and it is nothing to be worried about.....

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited December 2015

    Marsha, - sounds like irritable bowel syndrome. I, too, had sono a few months ago for similar issues. I also just had a colonoscopy, and the dr suggested some peppermint oil pills, - will send the name to you when I dig them out.

    Ally, - these aches and pains come from so much of what we have been through, - chemo, surgery, rads, etc. Dont think the worst!!

    Cocker, - I, too, second that nomination!

    Shari, Luv, Meadow, Arlene, Lisa, Alhusband, and everyone else, - I look forward to your posts, even though I haven't written much lately. I hope that your holiday season has been happy, and that 2016 brings joy and GOOD HEALTH to you and yours!!

    Love & hugs from NYC

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  • NYinshocked
    NYinshocked Member Posts: 32
    edited December 2015

    hi all, I don't post much but here is something I think every triple neg bc patient should be aware of . I am not sure my dx show on my profile, I am 33, I was dx this January at 32 with TNBC. I was recently married to a wonderful husband and we were trying for a baby when all that happened. :( still hopefully my period will return. I had surgery first with left Mx then finished 6 months of long chemo, and was done with radiation by oct. I work in banking and very type A,one of my copping method is do a lot research. I found this promising vaccine trial at the mayo clinic back in February, I want to share the news

    http://finance.yahoo.com/news/tapimmunes-phase-ii-trials-breast-141500052.html

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  • Allydp
    Allydp Member Posts: 520
    edited December 2015

    Arlene, Lisa, Meadow, Shari, Luv, Simple, NYC - you ladies are amazing. Thank you all so very much for your support. I don't know how I'd manage without it...truly! My husband called my onc's office this morning and learned that both my onc and her nurse are our the entire week! No one told us this minor little tidbit of news and they had plenty of opportunity during the many phone calls we've put in and both of us explaining how we didn't want to have to go through the holidays waiting. He spoke to a nurse of another onc in the practice who was helpful. She said my scan was seen by my onc, but she has yet to sign off in order to send it over to radiology. So radiology doesn't even have it like we were previously told. I'm beyond frustrated, but I have to think they wouldn't back burner this if they saw something concerning. I've gone to my onc and breast surgeon with a lot of pains over the course of my treatment and post treatment. I'm sure I'm "that" patient by now and probably should start calling my PCP for this kind of thing. They're giving me another week or norco and we're waiting for a call back about a possible echo. But as of now I'm done worrying. It's nothing until it's something!

    Marsha - I am so very sorry you're going through such a scare. I agree it sounds like irritable bowel. My SIL has it and it presents just as you describe. It always flares for her around the holidays. I'm so glad your PCP is checking it out though and I know how hard it is not to worry when new things arise. Please keep us posted and I'll be sending you lots of good thoughts.

    NYinshock - my heart goes out to you. My husband and I were also trying for a baby prior to being diagnosed and now trying with a surrogate. I also work in banking and do a lot of research as a way to cope. We have too much in common. :) Thanks for posting the link to the vaccine trial. It seems there's so much research for us on the brink of breaking through. I hope something comes out of it very, very, very soon.

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  • NYinshocked
    NYinshocked Member Posts: 32
    edited December 2015

    ally, why a surrogate? my mo gave me okay for a baby after a year post chemo. I am in touch with the vaccine coordinator, they are very close to open the trial up...

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  • SA8PG
    SA8PG Member Posts: 371
    edited December 2015

    Nyinshock

    I'm sorry you are here but welcome to our great group. Your period should return. You are still young at 33. Mine has returned and I just turned 40. I was in chemopause for 7 months during treatment.

    Hugs & prayers as you wait on a precious baby for your family.

    G

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited December 2015

    Marsha, I have very similar symptoms off and on. I have gastritis, GERD, and IBS. Sometimes it's very painful and the anxiety from it shakes me to the core! I have had IBS for as long as I can remember but ever since finishing treatment it's been worse. I will tell you anxiety only makes it worse! I've had to increase my Zantac because it seems like everything I eat lately causes bad heartburn. Again anxiety makes it worse! Gastritis can cause pain, bloating, nausea, heartburn, filling full after meals even small meals. Sometimes I can eat something and ten minutes later I'm on the toilet with diarrhea. Sometimes it doesn't hit until the next day. PM me if you want to know anything else. I'll pray for you! In your pocket tomorrow and waiting with you.Keep us posted. XOXOXO!!!

    AnotherNYCgirl, thanks for checking in! Good to hear from you!

    Ally, keep on hanging in there. Try not to worry. We're right there with you. Don't forget!

    HUGS and prayers everyone!!

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  • Allydp
    Allydp Member Posts: 520
    edited December 2015

    NYinshock - I'm BRCA+ and had my ovaries and uterus removed after chemo and surgery. However this will be our sixth year trying to conceive. We're using donor embryos and our friend has offered to carry for us, so we're praying this our year. I hope your period returns soon and wish you all the very best in your journey to start a family.

    Luv and everyone else, thanks again. I woke up feeling the worry wash over but after reading all of your posts I'm starting to really trust this is probably another random pain from chemo or surgery.

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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited December 2015

    I'm still a newbie to here but I gotta say you ladies are really awesome with caring And supporting one another. Makes me feel less alone. I have barely finished chemo and still have rads so my path of worry about scans, reoccurrence, and anxiety is still so overwhelming. Does it get a bit better after treatment

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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2015

    Shopgal, as hard as it is to do, try to relax. Try to trust the process of restoring your health. I believe very strongly that the mind and body are linked, in sickness or in health (lol). But seriously, just as anxiety can give us diarrhea, or something wonderful can make us cry happy tears, worry, stress, anxiety can hinder healing. I wanted to give the powerful drugs I was taking every chance to work their best on my cancer. I did not know how to feel about my cancer early in my diagnosis....should I hate it? fear it? What was the BEST way for me to address something that was a part of my own body trying to kill me? Then, I had a wise, loving person tell me two words that gave me the mindset I needed, that still helps me fight today. She said, "Love heals". That made so much sense to me, it put my mind in a positive place, a more calm place, and yet a place from which I could FIGHT HARD to win, to be healthy again. I have shared before here that I actually visualized the cancer leaving my body, I lay down on my back with my arm over my head, and imagined my cancer leaving my body in a stream. I hope that doesn't sound too whacky, too crazy....I really am a normal person!. I believe that this, plus powerful prayer warriors asking God for help on my behalf, plus great chemo and treatment team, all combined to get me to NED, no evidence of disease. Be a strong part of your treatment plan, by doing what you can to get healthy, don't hinder. To me, this means positive mind, healthy eating, tons of water, sleep/rest, of course no smoking, and some exercise when you feel you can, even if it is just a walk in fresh air. I hope this helps, that is my intention, my desire for you and for everyone.

    Another, so good to hear from you!

    NY, welcome!

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited December 2015

    meadow that response was perfect! Exactly what a newbie (shop gal) needs to hear

    Marsha, good luck tomorrow

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