MIDDLE-AGED WOMEN 40-60ish

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  • Loral
    Loral Member Posts: 932
    edited September 2016

    Diana..thanks for checking in, all the best to you, I hope you get the care you deserve.....

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

    if they can radiate a chest wall can they radiate an abdomen. Sadly I have a bad feeling about this

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

    Yes they can radiate there. Think about people with colon cancer.....keep us posted , sweetie.

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

    Dianarose--so much misery, so unfair.Praying for you.

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

    Dianarose, The new blockage must have felt terrible. There has got to be some help for you soon. The endoscopy does not sound pleasant but sometimes it is our fear of the unknown that is the worst and the actual procedure turns out to not be that bad. If doing that biopsy is going to aid in fighting off or getting rid of those blockages, then go for it. What hormonal therapy are you actually on now? You only list Aromasin and that sure must not be doing anything...haven't they tried another? With you being ER/PR+, it seems like that would be a good line of defense so I would have thought they would keep going on that to find some that works for you???

    Barbe is certainly right, abdomens and pelvises (or is that pelvi ) are being radiated all the time. In Stage IV therapy, I think radiation can be used to shrink down larger masses that are pressing on internal things and causing trouble and pain, so maybe that is an option that could be used in Dianarose's case.

    --------------------

    I didn't get around to posting yesterday because I had my "last ditch" appointment about my thyroid/parathyroid issues yesterday. Let me use an old standard formula to summarize that for you:

    Three hour drive to second opinion from doctor at teaching hospital = $29.00

    Copier ink and paper to hand deliver some additional reports = $1.05

    Mediocre lunch at Greek restaurant = $41.00

    Parking (1/2 off) = $2.50

    Charge for specialist OV (which is, miraculously, in-Network) = $40.00

    Getting my treatment choice validated and being able to get surgery exactly the way I want it = PRICELESS

    I really did not know what my odds were going into this consultation and, as always, I was hoping for the best, yet preparing to hear the worst that yet another doctor would tell me I should lose my whole thyroid gland over a small lump just sitting there not doing anything. But no, this time I went to a renown specialist (the kind who says stuff like, "I wrote the guidelines" and it's not just ego, it's fact) and he was up for just taking out the one naughty parathyroid that I have and leaving everything else alone.

    You know how doctor's will sometimes say to you, "Well, if it were my wife, I would do such and such" I turned the tables and asked this doc, "If you were me, with the same nodule on your thyroid, would you leave it alone and just continue to observe?" He replied that he probably would. He also said a few appropriate things about the overtreatment of papillary thyroid cancer. He also mentioned his "buddies" who authored the most recent important study that has lead to all the recent talk/press about the overtreatment. Finally, I had met the right doctor!

    Anyone just picking up on my current cancer (well, suspicious thyroid nodule with 85% chance to be cancer) saga, please know that thyroid cancer is not Breast Cancer and has a different set of rules. Also know that I have spent the last 2-3 mos., doing a lot of reading about it and only then coming to an informed decision. Also know that the doctors in my own town either treated me like a moron, tried to fear-monger me into a surgery I did not want, or simply refused to honor my wishes for what was done to my body. It is only in that context should you read this about how I did not give up, went elsewhere, and finally did prevail for all the right reasons.

    Yay, me!


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

    You just never know who reads the discussion boards, do you?

    Thank you Mr. T!

  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited September 2016

    I totally agree with Mr. T!


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

    el- so happy you finally found a doctor who will help you🤗 You must have finally gotten a better nights sleep👍

    Oncologist wants to put me on Ibrance after I have surgery. Very nervous about the side effects but on the other hand it seems to be working for a lot of ladies.

    I didn't mind the endoscopy it was the pumping of the stomach that was the nightmare. So afraid of ever going through that again.

    This full liquid diet is the pits. So dam hungry😖 I have found I need to put something in my stomach every hour or get bad gas. You don't exactly crave broth or jello😖 I saw on a couple of sites that eggs or egg substitute is allowed. I am calling today. I would be so excited if I could have some scrambled eggs. Something with some texture.

    My DH is so good. He never left my side. Slept in my hospital room. He's a keeper

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

    D-Rose, All I know is that when I went on my walk yesterday, my footsteps actually felt lighter because a weight had been lifted off of me. BTW, I completely understand how starved you can get in a hospital. After my surgery, they were slow to give me solids and I was ravenous. The lady next to me had intestinal blockage and was on liquids for three days and all we talked about was food and how hungry we were. Maybe you will be able to get some eggs but those can get you pretty gassy as well. Watch out.

    Or is that just me?

  • Loral
    Loral Member Posts: 932
    edited September 2016

    Elimar...Good decision, good choice in Dr's...

    image

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

    No eggs😓 Bought every cream soup they make today. Had cream of wheat for supper. Doc said he is still working on getting me the robotic surgery. Oncologist said radiation would only be for a specific area but without a biopsy we don't know. He also said immunotherapy is still in a study phase. Keeps talking chemo again😓. Just plain tired today

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

    Ooooh!, D-rose, I don't remember you mentioning robotic before. Those surgeries are pretty good. No shakey surgeon hand, no giant wounds to let infection in. You could do a lot worse than the robot. Besides, then you can be in the Robot Club with me. Why just two days ago at the appointment I mentioned above the nurse saw that I had robotic surgery in my history and she said, "Oh, you had a robotic surgery," and I could hear a little smidgeon of awe and wonder in her voice. That is the coolness of the robot, my friend.

    Thank you, Loral, for that four-smiley salute!

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

    El-can you explain how the robot surgery works? I have no idea

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

    Diana, I had robot surgery too, and it is way cool. It is basically like laparoscopic, except the instruments are held by a robot rather than a surgeo. The surgeon operates the robot with a joystick. The robot allows greater reach and accuracy than standard laparoscopy. They also use less air, only half a liter, so recovery is easier. I was pretty much up and running in 24 hours

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

    Dianarose, Momine beat me to it and has described the robotic surgery quite well. I will only add that rather than one big scar from an open surgery, you end up with 3 or 4 or 5 (depends on all what instruments are needed) small incisions, some even less than one inch. Mo is right that it is like laparoscopic, and that is because robotic surgery IS laparoscopic, just done with a robot. Both human and robotic laparoscopic surgeries are less traumatic to the body and the healing is quicker. Do not fear the robot. The robot is good.

    My CRC robot was called "Da Vinci." Does that sound at all familiar? I don't know how many kinds there are out there. What kind of robot did you have, Momine?

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

    well this robot stuff is intriguing 👍 Sounds like a much easier recovery. I go to the dr on Tuesday so hopefully we will know more.

    Revived some sad news yesterday. My cousin was killed Ina horrible motorcycle accident. It is still being investigated . He hit two people on a cross walk and they were left in comas. He was ran over by a car that kept going. He was such a feat person. Still hard to believe.

    We'll leave it to me to over eat on a liquid diet to the point of throwing up. I pray it's not another blockage😖

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

    Yes, mine was also davinci. The two top davinci surgeons worldwide are the guy who invented the thing and the guy who operated on me. He is absolutely fabulous, including as a human being, but I digress. In addition to doing what he was paid to do, a partial hyster, he also painstakingly undid the extensive damage and scar tissue from the botched C-section I had 20 years prior. Result: normal bladder function, no weird bulge on my abdomen and no recurring, debilitating pain. I have been told that any other surgeon would have slapped me on the table and gone at it with an old-fashioned scalpel when he saw all those adhesions and general mess. But this guy is a perfectionist and figured I had been through enough already and didn't need an open abdominal surgery to top off all the fun, so he sat there scraping my bladder from my abdominal wall, millimeter by millimeter, with the joystick. Oooopps, just digressed some more. Can you tell how much I love him? :

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

    DianaRose--so sorry to hear about your cousin. So horrible, so sad. And I am still praying for you to feel better. And you CAN overeat on a liquid diet. Have you tried instant breakfast mix? Sometimes the higher fiber in those helps with the hunger.

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

    I feel much relived about the robot surgery. Just need to hurry up and have it. I don't know if it takes a lions time for your stomach to feel some what normal after what mine has been through but still doesn't feel right.

    The oncologist thinks they are going in just for a little tissue biopsy but urologist said he wants to remove as much of the problem as possible. What is it with oncologist wanting to leave the problem so they can monitor it? I want to eat again and not pee in a bag😖

    The problem I have with this diet is it is mostly sweet stuff. Not big on sweet

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

    D-rose, Sorry to hear that shocking news about your cousin.

    Momine, I also have professed my love for my surgeon and my robot. I know I am alive because of them. Even if a human could have done it alone, I know human + robot turned out well in my case so I'm happy. The funny thing was, I was initially so procedured up that I took a break before finally seeing an out-of-network doc to finally get my CRC Dx so that 3-4 mos. had passed. If I had not had that hesitation (and it turned out not to have made a difference in regards to treatment) then I never would have had the robot because that doc just started in the practice one month before my Dx. It is funny how, in all my unluckiness, I also get incredibly lucky .

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

    El and Momine- does this robot have a camera to look around and find the little bastard giving me so much trouble? Once it's located does the robot cut it out and remove it. Is it a longer procedure?

  • Loral
    Loral Member Posts: 932
    edited September 2016

    Diana...terrible news about your cousin, praying for the family...Glad to hear things are finally happening for you, hope this is the last surgery!!!

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

    Dianarose, Neither Momine nor I had YOUR procedure, so as far as the length of time...you need to check that with your doc. Yes, a laparoSCOPE is what goes in and has a look around. That will be one of the incisions made so that the scope can be inserted. It will be very handy at taking a close look at what is acting up in there all around your intestines and ureter. I think a separate incision is made for the robot arm that will wield the scalpel, and they can do precision cutting if that is the course they wish to take. I am just thinking that with you (and how confused everyone seems to be) that the decisions may not be all made beforehand. I mean any cutting may depend on how things look in there, ya know?

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

    Dianarose--Oncs like to leave stuff to monitor cuz it's the only way to know if chemo is actually working. Without something to measure on a scan we have to take it on faith that the chemo is actually doing anything on the cancer cells.The urologist is thinking about fixing the problem--by removing as much of the problem tissue as possible.

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

    Native Mainer- he can monitor my tumor markers. I want the problems fixed as much as possible.

    This diet is making me crazy. I finally had to tell DH to stop eating by me

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

    Don't blame you.


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

    Urologist is setting up a consult with a urologist who does the robot surgery. He wants him to take all the bad stuff he can get. I love how he thinks. MO thinks it's just a needle biopsy. Not going to tell him any different. He doesn't need to be in the loope quite yet. I feel like we have to be sneaky to get the right thing done. So screwed up when you think about it. Also said it's going to take some time for my stomach to heal after all it's been through. They are hoping to be able to remove the naphostomy tube. I want to wait a couple weeks after surgery to make sure it worked. Not going through that pain again. I don't mind the tube so much

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

    Got a call from CVS today. My MO called in Inrance without even discussing it with me first. Not liking this. I have a naphostomy tube, just plain skin and bone, on this stupid liquid diet, no strength what so ever and he wants to put me on something that makes your white count bottom our. Not happening right now. I don't mind starting the Xeloda but it needs to be discussed. Hate being treated like a dam lab rat

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

    {{{{{Dianarose}}}}}}

    Call your MO and tell him/her to back off, and wise up. Not logical to start chemo with an active problem and surgery in the near future. Don't pick up the Ibrance until you are ready to start taking it, if/when that time arrives.

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

    Native Maine- my surgery will be at Maine Med in Portland. I am going to ask to see one of their oncologist. Time for a second opinion. I did email the current one and told him in no way am I strong enough for Ibrance right now.

    When I came home I weighed 114.4 and now 115.8 so 20 pounds to go. Hard to do on this diet but I am determined 👍

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