confused by diagnosis

2»

Comments

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #22
    tommycat said:

    It couldn't hurt to get a
    It couldn't hurt to get a FRESH pair of eyes to look at you and your scans, and it sounds like it would give you some clarity and peace of mind.
    I too had to go into another system to get something checked out and, voila!, the new doctor saw the problem, without the unsaid hierarchy/territorial problems attached to the first hospital doctors.
    If your insurance will pay for it, do it.
    Take care~and big hugs!

    I'll be checking my
    I'll be checking my insurance Monday and this hierarchy thing is for the birds. I don't even care if the first doctor made an error. I have bigger problems, you know staying alive and all. I just want to move forward. Their egos are something else. And obviously all the lawsuits don't help.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #23
    tootsie1 said:

    Hope it goes well
    Good luck with everything, dear.

    *hugs*
    Gail

    When they get to surgery
    When they get to surgery they'll probably remove the lymph nodes....I think probably chemo. and radiation will do a number on those and hopefully kill off the cancerous nodes, and shrink your tumor. I know you want to move this along...I've seen many times people write on here that this isn't a race it's a marathon. Look at Craig and some others, they've been in the battle for many many years...there is a new normal that takes over your life with this disease. Keep us posted as to what you find out.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #24
    Helen321 said:

    Hi Ann, At Northshore I had
    Hi Ann, At Northshore I had CT, MRI, PET. PET showed one spot on my ovary suspected to be ovulation (not yet confirmed either way, have to wait for surgery), otherwise clear except the original site. Colonoscopy saw possible spot on my lymph, cleared. MRI was completely clear. Everything was just completely clear. Now only 6 weeks (literally) later and MRI at Sloan shows my lymphs are full of spots? The original tumor grew back in just 9 weeks and is still growing. Then in 6 weeks I developed all these spots on my rectal lymphs and one pelvice. So in 15 weeks I went from possilby cured to what? I'm not even sure. I don't know what to make of any of this, I can't seem to find a precedent. Most cancers take 3 months to come back and even then it's usually not visible to the eye. Generally they take two years. I get the whole there is no norm thing but what if this thing keeps going at this rate? I just hope it responds to the treatment and what if the minute we stop treatment it comes back. This is all so confusing. I don't want to be one of those people that gets diagnosed and dies within a year. It just seems to be moving so fast. I wish I could find a precedent so I could find relief from the confusion.

    I have a very rare form of colon cancer (carcinosarcoma)...
    that is quite aggressive. For me, three months has been more than enough time for a tumor to grow from invisible to 2-3 cm in size. And there's a case over on the Colon Club, a man whose wife had something he referred to as "neuroendocrine colon cancer"...apparently that is also very fast growing. So I guess certain types of cc do fall into this pattern, although it's certainly not the norm. In my case, it didn't change the treatment plan in any way, but it does mean that I'll be getting scans on a more frequent basis than other people with the more "normal" form of cc, probably for a long time to come (if I'm lucky enough to be around for a long time!). I'm really sorry you're going through this, I know how terrifying it is, especially when it's hard to get clear answers. Hugs and strength coming your way-Ann
    Edit: Just read your comment to Steve...looks like you've run into that neuroendocrine thing already, sorry for the repetition.
  • steved
    steved Member Posts: 834 Member
    #25
    Confusion
    I am concerned by the range of different advise given above- most of which has merit in its own right but all together can actuall add to the confusion you feel (and I iunclude my own advise amongst that). At risk of adding to the confusion can a I make afew clear suggestions-

    Take all advise here as well intended but coming from lay people with lived experience of this. In this way it is hugely valuable but does not replace or override the expertise of your docs. They know more about you, your cancer and situation than any of us and ultimately you must trust them to make the right decisions.

    Specific suggestions here are only suggestions- not definitive answers of what should happen eg biopsy advise (it is likely they don't need to put you through another biopsy which is unpleasant and carries risks- they may just need to look at the slides of the first biopsy. Also biopsying lymph nodes is very technical and risky and rarely indicated so may not be the right thing unless your team thinks its necessary).

    Simply take a clear list of your questions that you need answered to feel confident and in control of your situation. Do not go with the intention of demanding test/ interventions you don't really know if you need. You need clarity and trust in your team and that comes from good communication on both sides- you communicating what you need to know and tehm providing sufficient answers to satisfy you.

    I hope things go well

    steve
  • Coppercent
    Coppercent Member Posts: 158
    #26
    We are all individuals....
    I think the one thing we all have to keep in mind that if "Joe", "Jonnie", and "Julie" have rectal cancer they may or may not all get the same treatment. I hear a lot on here that well if it is rectal cancer then the treatment should be this or that. But that is definitely not the case. There are so many factors in why our doctors choose our treatments. When my doctor and I were deciding on my last treatment plan he went over all the tiny details in my case that he looked at and honestly I was pretty amazed at the information he was presenting to me. I searched long and hard before choosing my oncologist and I feel I have chosen the best one for me. Now does that mean he is the best for everyone, probably not. We all require different things. But I am very confident in his ability to make the right decistion for my treatment plans. That being said, I still want the reasoning behind why he is making those decisions but with my oncologist he automatically tells me why he is doing what he is doing but in the end, he tells me it is my decision.
    I know I was the most annoying person when I was trying to choose the right oncologist. I talked to several of his patients and talked with other medical professionals and asked if this was your Mom which doctor would you recommend. After many recommendations for the same doctor I thought well he must be doing something right. At my first appointment with him I interviewed him like I was interviewing someone I was hiring for job. It was just as important to him to give me quality of life as it was to cure the cancer.
    If you are confident in your oncologist don't second guess his decision because of things you hear on the cancer blogs. Everyone is an individual and is different and requires individual treatment plans. I ask my oncologist about different things I hear on here and he always gives me his opinion then refers me to the studies on the things I have asked about. Because in his thinking, the final decision is always mine. There is nothing I have brought up that he has not heard about before.
    Hope you do well with your first chemo.
  • omrhill
    omrhill Member Posts: 125
    #27
    steved said:

    Confusion
    I am concerned by the range of different advise given above- most of which has merit in its own right but all together can actuall add to the confusion you feel (and I iunclude my own advise amongst that). At risk of adding to the confusion can a I make afew clear suggestions-

    Take all advise here as well intended but coming from lay people with lived experience of this. In this way it is hugely valuable but does not replace or override the expertise of your docs. They know more about you, your cancer and situation than any of us and ultimately you must trust them to make the right decisions.

    Specific suggestions here are only suggestions- not definitive answers of what should happen eg biopsy advise (it is likely they don't need to put you through another biopsy which is unpleasant and carries risks- they may just need to look at the slides of the first biopsy. Also biopsying lymph nodes is very technical and risky and rarely indicated so may not be the right thing unless your team thinks its necessary).

    Simply take a clear list of your questions that you need answered to feel confident and in control of your situation. Do not go with the intention of demanding test/ interventions you don't really know if you need. You need clarity and trust in your team and that comes from good communication on both sides- you communicating what you need to know and tehm providing sufficient answers to satisfy you.

    I hope things go well

    steve

    Good post
    Steve - this is a very wise post, and your words are applicable to all of us as we handle our own illnesses and treatment plans. Thank you.
    Robin
  • Helen321
    Helen321 Member Posts: 1,459 Member
    #28
    Coppercent said:

    We are all individuals....
    I think the one thing we all have to keep in mind that if "Joe", "Jonnie", and "Julie" have rectal cancer they may or may not all get the same treatment. I hear a lot on here that well if it is rectal cancer then the treatment should be this or that. But that is definitely not the case. There are so many factors in why our doctors choose our treatments. When my doctor and I were deciding on my last treatment plan he went over all the tiny details in my case that he looked at and honestly I was pretty amazed at the information he was presenting to me. I searched long and hard before choosing my oncologist and I feel I have chosen the best one for me. Now does that mean he is the best for everyone, probably not. We all require different things. But I am very confident in his ability to make the right decistion for my treatment plans. That being said, I still want the reasoning behind why he is making those decisions but with my oncologist he automatically tells me why he is doing what he is doing but in the end, he tells me it is my decision.
    I know I was the most annoying person when I was trying to choose the right oncologist. I talked to several of his patients and talked with other medical professionals and asked if this was your Mom which doctor would you recommend. After many recommendations for the same doctor I thought well he must be doing something right. At my first appointment with him I interviewed him like I was interviewing someone I was hiring for job. It was just as important to him to give me quality of life as it was to cure the cancer.
    If you are confident in your oncologist don't second guess his decision because of things you hear on the cancer blogs. Everyone is an individual and is different and requires individual treatment plans. I ask my oncologist about different things I hear on here and he always gives me his opinion then refers me to the studies on the things I have asked about. Because in his thinking, the final decision is always mine. There is nothing I have brought up that he has not heard about before.
    Hope you do well with your first chemo.

    My oncologist came with my
    My oncologist came with my surgeon. I was just going in for surgery, had no idea I'd even need an oncologist. I don't even know exactly what stage I'm technically in now with the new lymph discovery, if they were there before or are new. If I am even diagnosed right because the surgeon day one said I think you've been misdiagnosed and just when they called me to tell me about the lymphs, the whole team went on vacation. So I'm in limbo until Monday and no one at the hospital will answer any of these questions, they only handle emergencies. I not only don't have faith in the team, I at this point don't have faith in the hospital. I'm going to get a patient advocate tomorrow. That is what I decided is the best course of helping myself. Have someone in the know help me maneuver this hospital.

    First infusion had a reaction in my arm, we let the swelling go down and I got to finish. Getting a port. Pills I'm doing okay so far, just red face and immediate sensitivity to sun, a little discomfort in the mouth. I watered my plants after the sun went down and forgot and drank something cold. Won't do that again.

    Thanks for the advice.
  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    #29
    Helen321 said:

    My oncologist came with my
    My oncologist came with my surgeon. I was just going in for surgery, had no idea I'd even need an oncologist. I don't even know exactly what stage I'm technically in now with the new lymph discovery, if they were there before or are new. If I am even diagnosed right because the surgeon day one said I think you've been misdiagnosed and just when they called me to tell me about the lymphs, the whole team went on vacation. So I'm in limbo until Monday and no one at the hospital will answer any of these questions, they only handle emergencies. I not only don't have faith in the team, I at this point don't have faith in the hospital. I'm going to get a patient advocate tomorrow. That is what I decided is the best course of helping myself. Have someone in the know help me maneuver this hospital.

    First infusion had a reaction in my arm, we let the swelling go down and I got to finish. Getting a port. Pills I'm doing okay so far, just red face and immediate sensitivity to sun, a little discomfort in the mouth. I watered my plants after the sun went down and forgot and drank something cold. Won't do that again.

    Thanks for the advice.

    Take a deep breath Helen
    Hi Helen,

    Just wanted to say I am supporting you. I was diagnosed with Stage 3 rectal cancer in Sept., 2010. I had a port placed in October, started radiation and chemo in October. I did not have removal of my rectal cancer and lymph nodes until end of January, 2011. I had 3 lymph nodes involved out of the 29 that the surgeon took. Following surgery and 6 week healing period, I started up chemo again until end of June, 2011. The lesions on my liver are hemangioma's which is non-cancerous so yes, sometimes things look suspiscious but turn out to be o.k. I am considered a Stage III rectal cancer survivor now ( I have my next scan end of July, 2012.

    Keep your head up. Breath deep and follow what your doctor's tell you. Rectal cancer is a tough one but so are you! Keep up your fight but keep your energy to fight the cancer not the Drs...I went to a national cancer center for my surgery and follow-up care. Mayo Hospital in Rochester, Minnesota. Be proactive in your own health but make sure you listen well...hard to take in all the information at once...

    Prayers to you Helen and remember you can beat this beast!!!!

    "Minnesotagirl"

Discussion Boards