MIDDLE-AGED WOMEN 40-60ish

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited September 2016

    Praying for you, Dianarose, Maine Med is a good hospital. Good idea about a second opinion, too.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited September 2016

    so urologist said Tuesday I would hear back in 24 hours. Called the office yesterday and was told all my information was given to urologist who is supposed to do the surgery and they make their own appointments. Never heard so called this morning. He is off on a conference somewhere and they can get me in for a consult on 10/14. Are you kidding. Been out of the hospital 8 days now they want me to wait 15-16 days more just for a consult! Called my urologist and left a message of course that he needs to find someone else. I will be starved to death by then or the cancer will grow to the point of a blockage where liquids won't pass. Don't even know what to do. Called primary doc and she's out today. Having a meltdown

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2016

    Don't blame you sweetie! Gentle hugs....

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited September 2016

    Dianarose, That is outrageous. You have been having pain and trouble all this time and it seems more than a touch sadistic that they would leave you in that state for yet a few more weeks. Maybe try calling again when doc is back, so that he might o.k. a time to slip you in to see him sooner? Who is in charge of your nutrition during that interval? Are you just supposed to wing it and eat mayo from the jar with a spoon? You need some calories, not just liquid.

    I am happy to report that I am having continued success with my proposed active surveillance on my thyroid. The endocrinologist that I hate basically told me before that if I wanted to just watch my suspect thyroid, that he would not be comfortable with that and he'd have to refer me to another doc. Well, I saw my MO today (and I actually like him.) He had ordered all but one of my previous ultrasounds on my neck and after I filled him in on my latest saga, he agreed to keep the monitoring going. That was my last base to cover, so things are finally working out for me.

    So, p.s. D-rose, there are a few good docs out there and I hope you can get one to start helping you real soon.

    Another, p.s. Diana: Can you chug down a bunch of Ensure?

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  • Loral
    Loral Member Posts: 932
    edited September 2016

    Diana that's awful, praying you get some answers quick.......is your insurance Medicare???

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited September 2016

    I did get a call late today that the urologists partner can see me on the 6th. DH called Lahey in Boston. Talked to the urology dept and faxed all my reports. They should call tomorrow.

    Primary doc said to eat some thin apple sauce. It was good. I made a cheeseburger soup for DH and I strained some broth to go with my applesauce . Mornings are horrible. Full of painful gas🙁.

    El- ensure is so nasty. Bought some homemade ice cream and made a shake. I save the oatmeal or cream of wheat for night time to carry me through. Sick of jello and pudding.Other then both and strained soup this is my diet. I can have juice. Tried one purple v8 veggie juice but it was nasty.

    El- I am happy you got the results you have worked so hard to get. It just shouldn't be so hard! I want to see a new oncologist too. Not liking mine so much anymore.

    Loral- we have great private insurance and it's a PPO.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2016

    Dianarose, Do you have a blender so you can at least make smoothies? You could thin them down even more with water or milk. Would the dietitian ok that? You need to get some real protein. We have a Blendtec, and once in a while I will add a hard boiled egg to my smoothies. The Blendtec is like an industrial strength blender and it totally liquifies the egg and just about everything you put in it.

    Yeah, those other V8 juices are really NASTY!

    Lita

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited September 2016

    Welcome, Lita57! I was also thinking Dianarose needs vitamins and protein. That is why I thought of Ensure, but she is right that they don't taste that great. (My mom liked the Vanilla one, but I did not care for it at all.) Although a blender makes everything small going in, it still depends on how bulky and fibrous it going through the intestines.

    Dianarose, How is it that you can eat oatmeal? The super runny kind? I mean it still has quite a bit of fiber. I thought they were trying to keep you low-fiber so less potential for blockage. I had to be on the low-fiber diet for some weeks after my CRC surgery, and there were still quite a few things I could have, but your diet sounds more restrictive than that even. Did you get a list of CAN and CAN'T have items? If not, ask for a list of what you CAN have because maybe there are more than you think. I mean, if the doc added applesauce, maybe there are a few other things that would be o.k. too.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2016

    I totally agree w/elimar. Get a list of "can and cannot eat." (BTW: I thought about the fiber thing, too, El.) But if you can eat applesauce and oatmeal (both of which have some fiber), maybe you can eat some other things.

    Lita



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  • Loral
    Loral Member Posts: 932
    edited September 2016

    Diana...I'm glad you have good insurance, I buy mine and it is a PPO too... Why I like it is I don't need referrals and if I want to change Dr's I can. The reason I asked is I thought maybe medicare was preventing you from doing just that..

    Glad you are feeling better.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited September 2016

    If you google full liquid diet each site says something different. Primary doc is supposed to call today to see just how narrow the passage way is in the small intestines. To add some puréed food would be great. A true liquid diet is supposed to be something that starts as a liquid or will melt to a liquid. Why the oatmeal and cream of wheat is on there is confusing. Some sites say you can have scrambled eggs but doc says no . Some sites say puréed fruit and vegetables are ok but hospitals menu says no. As hungry as I am I would rather her check how big the passage way is. I would rather avoid getting my stomach pumped again

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  • Momine
    Momine Member Posts: 7,859
    edited September 2016

    Diana, that is crazy. So wish you were here. I bet I could get you in with Dr. Geek, my robot guy, right snappy.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited September 2016

    Momine- where do you live?

    Doc looked up report from endoscopy and it said it was a narrow opening but he did get the scope through. Also said I started wretching when he pulled it back through. So glad I don't remember anything . So I have two appointments next week. One in Portland with a urologist who does the robotic surgery and with one at Lahey Hospital. One is Thursday and the other is Friday. I want to choose. I also need a gastroenterologist because there was two blockages. One in the intestine and one as the stomach empties. Report says there is thickening there. I am trying to stay hopeful but the more I learn the less hopeful I am

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  • Momine
    Momine Member Posts: 7,859
    edited October 2016

    I am between Denmark and Greece, but Dr. Geek is in Athens, where I am at the moment. People do come from abroad, including North America, to be operated by him

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited October 2016

    {{{{{DianaRose}}}}}

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    nativemainer- the leaves are still mostly green here in the southern part of the state. What about where you are

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited October 2016

    Dianarose--leaves are just starting to turn here. Got some nice reds coming on. Lots of leaves getting blown off already, though.


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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    You may hate Pinktober but allow me to ask that you to give encouragement this month to some of the newly diagnosed. I know I have not visited those threads for a while and I will try to do a bit of "outreach" this month. Honestly, I don't think about BC that much anymore but I think I can spare a few moments if it will help a full-on BC freakout. We all have an extra few minutes to do it, don't we?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited October 2016

    Elimar - great advice. I've been trying to go to the "active threads" section more often in the last month and pop in with a comment if I think I can help one of the new 'members'. This site has been so valuable to me that I want to pay it forward as much as I can.

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited October 2016

    Good idea. I remember how much I depended on this site to get through the early days of panic and fear.


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    off to consult number one. I am really stressed out today 😖 Hope she can help me. I hate the thought of another surgery

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Hey, Dianarose, how did it go?

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  • Lita57
    Lita57 Member Posts: 2,437
    edited October 2016

    Praying for you, Dianarose. Sheesh, you've had a really tough time here lately. Praying for some good options and relief.

    Lita


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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    Consult didn't go how the other urologist thought it would. She said it's too difficult to see what's going on with the scan and said surgery could kill me. She suggested a new oncologist and is going to try to help me get one. Going to Lahey tomorrow and will hear what he says. Hopefully can get matched with an oncologist there to get things started. She said need chemo. Just want to get things going. Another infection in the kidney with the tube so back on antibiotics 😘 Have to have the tube replaced soon. I'm tired

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Dianarose, clearly you are in a weakened state because this has been going on for some time now. What have you found out about your nutrition? Can you have semi-solids? Can you eat a few low fiber/low residue foods? I'm asking because based on what you described to us before, how are you supposed to get strong when you can't hardly eat anything? Shouldn't they be trying to build you up in case you really need surgery above everything else? Maybe getting some new members on your team will be a step in the right direction. Just wish this could turn around for you a lot quicker, and if I feel like it is really dragging on a long time, I can just imagine how it feels for you, my poor friend.

    image <<Love me some crazy cat-head graphic!>>

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited October 2016

    el- I feel like I'm in the twilight zone. I am hoping at Lahey all the doctors I need are in the same dam place. I can't do this much longer. Still losing weight. They need to do another scan now that everything has been pumped out and the inflammation is down. We saw the scan and it was crazy scary. Couldn't tell what was what but all she had was the scan just before they pumped my stomach. I was told she had all of them. All we do is run around getting scans, reports and then they don't get forwarded. I need the tube changed out but now there is an infection 😖 Poor hubby is exhausted. This all started in June and we have no plan! Going to have a mental breakdown soon. They need to do a scan to see if I can or can not eat anything else

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  • Positive2strong
    Positive2strong Member Posts: 316
    edited October 2016

    dear elimar,

    I think I have the same diagnosis as you. I am scheduled for surgery oct 10

    I am 66, how old were you when diagnosed and did you have lumpectomy with radiation.

    I am so nervous about being put under for the surgery.

    But I know my diagnosis is good so far

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2016

    Positive2strong, welcome! I was younger but, yes I did have lumpectomy + whole breast radiation. On that other thread you posted on, a person suggested that when you have your pre-surgery talk with the anesthesiologist, to ask for an anti-anxiety drug beforehand. I didn't want to add more drugs to the mix myself, but that would be a good idea if you are really panicking. A lot of times we just panic about the unknown. I was scared of radiation too, but after going to the first one or two treatments, it turned out to be quite boring.

    For me, at seven years out, I would say I 95% feel that I am done with BC. If your Dx is the same as mine, you statistically do have a good prognosis, just get ready to spend the next 6 mos on the hamster wheel of treatment, and then you will no doubt learn the joys of being on an anti-hormonal drug for at least five years. Your life just changed, but it doesn't have to be all for the bad. For instance, you already found a place of info. and support from some good people. Good Luck with your surgery. Let us know how it goes.


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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana..thinking about you and hoping this all ends positively for you soon......Maybe a new MO and a new hospital??? I have found that the scans lately don't show enough info. or the info. is not accurate which leads to more testing, which leads to more money for the hospitals...Your's is a non-profit, teaching hospital...mine was too...

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  • Loral
    Loral Member Posts: 932
    edited October 2016

    Diana is this one close to you....Dana-Farber/Brigham and Women's Cancer Center, Boston


    The Top 20 Cancer Hospitals

    1Memorial Sloan Kettering (MSK) Cancer Center, New York City
    2University of Texas M.D. Anderson Cancer Center, Houston
    3Mayo Clinic, Rochester, Minnesota
    4Dana-Farber/Brigham and Women's Cancer Center, Boston
    5Johns Hopkins Hospital, Baltimore, Maryland
    6University of Washington Medical Center, Seattle
    7Massachusetts General Hospital, Boston
    8UCSF Medical Center, San Francisco
    9UCLA Medical Center, Los Angeles
    10Stanford Hospital and Clinics, Stanford, California
    11Hospitals of the University of Pennsylvania–Penn Presbyterian, Philadelphia
    12City of Hope, Los Angeles
    13Cleveland Clinic
    14New York–Presbyterian University Hospital of Columbia and Cornell, New York City
    15University of Colorado Hospital, Denver
    16Moffitt Cancer Center, Tampa, Florida
    17Northwestern Memorial Hospital, Chicago
    18Seidman Cancer Center at UH Case Medical, Cleveland
    19Fox Chase Cancer Center, Philadelphia
    20Wake Forest Baptist Medical Center, Winston–Salem, North Carolina

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