I need as much advice as possible!!!!

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Comments

  • dmj101
    dmj101 Member Posts: 527 Member
    #22
    gwj7 said:

    We're in central Jersey in
    We're in central Jersey in somerset county. We initially checked out a local place but my mom's friend who had cancer (not colon though) highly recommended Sloan and we've heard very good things. My parents both said that their NYC initial visit was good and they felt comfortable with it. The only problem was the nj location but I'm not completely sure what happened. My dad is calling later and will try to figure everything out. We only live about an hour from the city so if it came to it I don't think that would be a huge deal or anything.

    you have several options in
    you have several options in central jersey..
    Robert Wood Johnson is the NJ Cancer Center of the state.. and has great reviews..
    I go to St Barnabas and also has great reviews. I too am about 45 minutes from the city with no traffic but when does that ever happen..
    I know many who go to Morristown Memorial.

    My feeling is just that Sloan in NY is not an easy trip when you feel like crap.. even an hour will feel like 3 and if she is sick or her bowls have to be moved urgenty that trip will be horrible

    It is honorable you are dong research for your MOM.. but she will need to make her decision passed on the oncologist she clicks with.
    and the Surgeon..
  • gwj7
    gwj7 Member Posts: 21
    #23
    mom_2_3 said:

    Sloan
    GWJ7,

    I feel compassion for what you are going through. My father was diagnosed with lung cancer when I was 27. While I was much older at that time than you are now, it was difficult to function in my own life when my father was going through treatments and struggles in his own. Look to your mom for cues on how to respond. If your mom is looking to talk with you about her diagnosis, do so. If she wants to discuss other things, do that. You have not yet found out her exact diagnosis so it's quite possible that this next year will just be a year of treatments in her life and she will be fine and live to a ripe old age.

    Regarding Sloan, it's an excellent facility. From the surgeons, the oncologists, the nurses and administrative support staff, I have never met anyone that wasn't top-notch. When I was in the middle of my chemo treatments I would check-in to the front desk and the receptionist would always know my name before I gave it. I was amazed that the staff would know my name given the number of patients that are seen in the facility. No lie, there is sometimes a wait but I have never regretted my decision to go to MSK for treatments. It usually takes my an hour from my house to get there. If I have an 11:30 appt I will leave my house at 10 as you need to be there 1/2 hour earlier for bloodwork. Everything there is one-stop shopping so the times I needed an ultrasound, additional bloodwork, CT or mammogram, get chemo treatments or pick up prescriptions, I was able to stay in the same 53rd street building and never go to another location.

    I do go to the Basking Ridge location, however, for scans and when I occassionally needed shots or bloodwork outside of treatment days. It is also possible to go to Basking Ridge for metastatic treatment (ie chemotherapy) and I have 2 friends who did just that. One of those actually drives from Long Island all the way to Basking Ridge in order to see his oncologist. That friend is NED (no evidence of disease) more than 7 years from his last treatment and he was a Stage IV patient.

    I am also a Stage IV and I have been NED for 3 years and 4 months. If your mom ever wants to talk, please let me know and I would be more than happy to meet her at the Basking Ridge facility or elsewhere for tea/coffee.

    All the best to you,
    Amy

    Thank you!
    I really feel like my mom needs to talk to someone who has gone through this and I will try asking her about this at an appropriate time. I was just on the computer and saw one of my mom's emails that she had up and despite not wanting to invade her privacy, I read it and she was talking about having two doctors- one for her colon and one for her liver. I am shocked because she never actually told us that there was anything going on with her liver. When I directly asked her this a few days ago she said "the doctors think there is a good chance that my liver might be involved due to everything they've seen". Is having a liver doctor just "in case" or to check it out or does this sound like she has mets to her liver? aaaaaaaah I really can't deal with this. It just keeps getting worse and worse. Does this mean she is definitely stage 4? I don't want to lose my mom. Do you mind sharing which doctors you had at Sloan? I think my mom has Garrett Nash and I don't really know much about him.
  • peanutcat
    peanutcat Member Posts: 104
    #24
    John23 said:

    Peanutcat -

    Re:
    "Tell her people go through this all the time. I know a carpenter
    that HAD!!!! colon cancer and know he is Cancer fre. I saw him
    Sat. He was diagnosed last August and he already got his port out
    which to me and him means he is cancer free."

    Egads, but I truly hate reading this kind of stuff!

    A cancer cell usually takes two or more years to even be identified
    as a cancer cell using the usual indicators. Someone diagnosed
    in August is suddenly considered "cancer free"? As if they have
    been cured?

    This type of optimism is damaging to every cancer victim, since
    it generates the idea that if one's signs of cancer returns a month
    or a year later, then they are doomed; that cancer should have been
    eradicated within weeks of diagnosis if the treatments have worked.

    Most of us here have had one scare after another, getting treatments
    and finding that cancer was not eradicated as hoped for.

    If getting rid of cancer was that fast and easy, this forum would
    be of no use at all to anyone.

    Cancer is considered by the entire medical society as being
    a terminal disease. For some, it may be controllable and treated
    similar to a chronic disease, but there is no known cure to date.

    Please don't play down the seriousness of cancer.

    Best wishes for you for better health,

    John

    John23
    What makes you think the doctor is wrong about me being cancer fre from Breast Cancer? I'm really concrened now. Were you tol that and it came back or by reading about it?

    Cathy
  • abrub
    abrub Member Posts: 2,174 Member
    #25
    gwj7 said:

    Thank you!
    I really feel like my mom needs to talk to someone who has gone through this and I will try asking her about this at an appropriate time. I was just on the computer and saw one of my mom's emails that she had up and despite not wanting to invade her privacy, I read it and she was talking about having two doctors- one for her colon and one for her liver. I am shocked because she never actually told us that there was anything going on with her liver. When I directly asked her this a few days ago she said "the doctors think there is a good chance that my liver might be involved due to everything they've seen". Is having a liver doctor just "in case" or to check it out or does this sound like she has mets to her liver? aaaaaaaah I really can't deal with this. It just keeps getting worse and worse. Does this mean she is definitely stage 4? I don't want to lose my mom. Do you mind sharing which doctors you had at Sloan? I think my mom has Garrett Nash and I don't really know much about him.

    I"ve heard excellent things about Nash.
    My surgeon at MSK is Dr. Paty, but he speaks highly of Dr. Nash. We do talk about lots of things, and I was asking about Dr. Nash for some friends.

    Dr. Nash is a surgeon. Your mom will definitely have another dr - she needs a medical oncologist as well. Regarding a liver specialist, they may pull one in if appropriate. Liver mets are common with colorectal cancer, but you'll find lots of people here who have been successfully treated. Chemo before surgery has been shown to be very helpful in reducing the tumor size so that the surgery need not be as extensive.

    I originally saw 3 drs: Colorectal surgeon (Dr. Paty); medical oncologist (Dr. Chung - no longer at MSK) and urologic oncologist, Dr. Karim Toujiers, for a spot on my kidney (was benign.)

    You are new to all of this; it's normal to be panicking. However, take a deep breath. This is not a quick fix, however that doesn't mean that remission isn't possible. I'm clean now, despite extensive mets.
  • marbleotis
    marbleotis Member Posts: 720 Member
    #26
    marbleotis said:

    Sloan is not your only
    Sloan is not your only option. The NY and NJ areas have wonderful cancer centers. The most important thing is your Mom needs to feel comfortable with the center she selects. She also must have a good relationship with her Onc. I have CC stage 3b no mets, only symptom was left side pain front and back. Dx 1/13/12 at colonoscopy, surgery 1/31/12, rest 1 month, port implant 2/28/12, chemo started 3/7/12 and I am currently on chemo #11 of 12. I was born and raised in NY but have lived in NC the last 10 years. We have wonderful medical facilities here, just 10 minutes frm my house.

    I remember the NJ to NY traffic and this might cause your Mom undue stress commuting to appointments or chemo treatments if her solution goes that way.

    All of us lost our minds when we are first Dx'ed. Let her get that out. But I learned early that you will find someone always has it worse. I felt sorry for myself until a former neighbor was Dx'ed with CC stage 4 with mets at 26 years old. Wow!

    Keep talking to you Mom and her doc, find all the good cancer centers in NJ. Sloan is good but not the only option, and telling you that you had to wait because they are understaffed doesn't sit well with me. Information is power - start researching! Keep us updated please we are all pulling for your Mom and family. We have all been where you guys are right now.

    Sloan is great I didn't mean
    Sloan is great I didn't mean to downplay I just know the traffic situation there, but I'll bet there are locations locally to you in NJ that are Sloan affiliates. My point is to research, research, research. Keep asking the Onc until your parents are happy with their selection. Once your parents feel good about their choice everything else falls into place. Keep posting updates so we can see how your Mom is doing. These boards are great and have been a fantastic source of info and strenth for me.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #27
    Fear and Anger are normal.
    Fear and Anger are normal. We are all afraid of the unknown. It is OK to cry and be frustrated. Then take all of that emotion and put it towards reading about positive outcomes. Diet in the fight against the Big C is important. Exercise, and mental health are really important also.

    Both the care giver and the person with the Big C need to keep a mental balance that feeds each other positive. It is difficult for a care giver to completely understand but compassion is all the patient needs.

    Read about the future needs, Baby Wipes, Nuper Canal, toilet paper, etc... will be her future needs. I desired Ginger to calm my stomach. Bananas and gatoraid, at times were my positive calories. Do not read anything before 2007, Cancer treatment has gotten much better since then. Also make sure that the Oncologist is relying on data pre 2007.


    Best Always, mike
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #28
    be cool yourself and love her
    our journeys and treatments all very different.

    peace of mind is the number one goal even as of day 1 of diagnosis.

    you will get lots of support and suggestions here.

    hugs,
    pete

    ps possibly the best support you could offer is to keep your life together while you get used to the reality of bowel cancer. now if you are interested, and only if, well lets just say effective treatment is open to a very wide interpretation. you can certainly do research and attend consults if your able and into the medicine. you may even become a doctor or a naturopath as a result. for now just smile and rest and a restful sound sleep is the best place to start a healing journey. now google "lef cancer and melatonin" for a taste of what effective medicine can offer in my humble opinion. Health is a real long journey and you got to start somewhere.

    http://www.lef.org/magazine/mag2004/jan2004_report_melatonin_01.htm
  • esk2poo
    esk2poo Member Posts: 25
    #29
    pete43lost_at_sea said:

    be cool yourself and love her
    our journeys and treatments all very different.

    peace of mind is the number one goal even as of day 1 of diagnosis.

    you will get lots of support and suggestions here.

    hugs,
    pete

    ps possibly the best support you could offer is to keep your life together while you get used to the reality of bowel cancer. now if you are interested, and only if, well lets just say effective treatment is open to a very wide interpretation. you can certainly do research and attend consults if your able and into the medicine. you may even become a doctor or a naturopath as a result. for now just smile and rest and a restful sound sleep is the best place to start a healing journey. now google "lef cancer and melatonin" for a taste of what effective medicine can offer in my humble opinion. Health is a real long journey and you got to start somewhere.

    http://www.lef.org/magazine/mag2004/jan2004_report_melatonin_01.htm

    Hello
    First, RWJ runs a support group for patients and family members every other Wednesday. Barbara Hale runs it and you should seek her out to get info on the dates. It is good to talk.

    I had my surgery at JFK in Edison, was admitted to RWJ for c-diff after surgery. Had it pre surgery but it came back. Then I had all of my treatments at Princeton medical group. I too am in central Jersey and looked at many options. They are all standard for CC and wient where I realy felt comfortable. Princeton just built that new hospital in Plainsboro and it is beautiful. They updated their cancer treatment facilities and did not lose that small, hometown feeling with the staff. I was hospitalized 5 times during treatments for dehydration and blood clots and actually looked forward to being admitted. I guess I was really screwed up in the head.

    I finished my treatments in April and had my first post scans a couple of weeks ago and that was good so far.

    You also need to take care of yourself. You will be of no help to mom if you are not ok.

    Good luck,
    Allen
  • John23
    John23 Member Posts: 2,122 Member
    #30
    peanutcat said:

    John23
    What makes you think the doctor is wrong about me being cancer fre from Breast Cancer? I'm really concrened now. Were you tol that and it came back or by reading about it?

    Cathy

    Cathy -

    Re:
    "What makes you think the doctor is wrong about me being cancer fre from Breast Cancer?"

    That is not what I said or implied, Cathy. Please re-read what I did say?

    Minimizing the seriousness of cancer does not solve anyone's problem,
    it makes the problem of a recurrence worse for those it happens to.

    No-one goes from stage four to cancer-free overnight, unless there was
    a mistake in diagnosis to begin with. All stages are dangerous, not just
    "stage four". I have had too many friends with stage one and two, that
    have died within two years of diagnosis.

    It's great to have hope, and great to strive for survival, but downplaying
    cancer's seriousness is not the way to provide reassurance.

    My best wishes to you for good health,

    John
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #31
    gwj7 said:

    Thank you so much!!! I hope
    Thank you so much!!! I hope to eventually get my mom
    onto this site. I was initially in panic mode as well but this site has really calmed me down and made me realize cancer is bad, but you can get past it! The problem right now is that I don't know if my mom is really accepting reality and how she has cancer. She obviously doesn't want to accept something like this. We don't know her sage yet since we are only two weeks after diagnosis but apparently some lymph nodes are swollen on a scan. I don't know.... I am hoping for the best!!!!



    I also have been telling her about this site and asking her if she wants me to show her success stories with people having worst case scenario (like stage IV). She says she doesn't want to see anything here because I don't think she wants to face reality. I also don't think she wants to truly know what the next couple months will be like. I don't know...... Like right now she took a pill (I guess for anxiety) that her doctor prescribed to her last week.




    I hope that tomorrow is a better day. I just feel like ignoring it completely like what my mom wants to do is not the best thing. I certainly don't think it should be the only topic of discussion but I want my mom to know that people live with this and beat it. Any more advice oh **** appreciated!!!!!!! Thanks everyone

    If your mom has been given anti-anxiety meds,
    that should help at least a bit. They are a very useful tool, especially in the early stages of this journey when things are so crazy. We cancer warriors have to use every tool at our disposal, from counseling to medications to diet/exercise/supplements, to get through what will most likely be one of the hardest life experiences we will ever face. But it can be done, and you and your mom will get through this! And speaking as a mother myself, I can guarantee you your mom would almost certainly be very sad if you decided not to go to college because of her illness. I've encouraged my kids to keep living their normal lives as much as they possibly can, and would be crushed if they missed out on a big and exciting experience like college because of me. Keep us posted on how you all are doing, we'll be thinking of you. Ann
  • peanutcat
    peanutcat Member Posts: 104
    #32
    John23 said:

    Cathy -

    Re:
    "What makes you think the doctor is wrong about me being cancer fre from Breast Cancer?"

    That is not what I said or implied, Cathy. Please re-read what I did say?

    Minimizing the seriousness of cancer does not solve anyone's problem,
    it makes the problem of a recurrence worse for those it happens to.

    No-one goes from stage four to cancer-free overnight, unless there was
    a mistake in diagnosis to begin with. All stages are dangerous, not just
    "stage four". I have had too many friends with stage one and two, that
    have died within two years of diagnosis.

    It's great to have hope, and great to strive for survival, but downplaying
    cancer's seriousness is not the way to provide reassurance.

    My best wishes to you for good health,

    John

    John
    Sorry,everyone makes mistakes.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #33
    peanutcat said:

    John
    Sorry,everyone makes mistakes.

    You need to have hope and be
    You need to have hope and be positive but i also have to agree with John. I went 2 years after my first surgeries and treats then had a recurrence. Had surgery and treatment again then went over 4 years before having my second recurrence. Had surgery and treatment again. I am now done with treatment. Last 2 scans were clean and i am about to have my port taken out again. Lets see how long i last this time. I am hopeful that it wont come back this time but the reality of it is that most likely it will.

    BTW the industry standard and i do mean industry is you have to have clean scans for 5 years to be "considered cured". I think that is wrong. It should be 10 years. I have heard about plenty of people who have recurred well after the 5 year mark. Some were initially diagnosed stage 2.

    The fact of the matter is the oncologist are over worked in a very depressing industry or field and really dont know. So much of it is guess work.
  • John23
    John23 Member Posts: 2,122 Member
    #34
    janderson1964 said:

    You need to have hope and be
    You need to have hope and be positive but i also have to agree with John. I went 2 years after my first surgeries and treats then had a recurrence. Had surgery and treatment again then went over 4 years before having my second recurrence. Had surgery and treatment again. I am now done with treatment. Last 2 scans were clean and i am about to have my port taken out again. Lets see how long i last this time. I am hopeful that it wont come back this time but the reality of it is that most likely it will.

    BTW the industry standard and i do mean industry is you have to have clean scans for 5 years to be "considered cured". I think that is wrong. It should be 10 years. I have heard about plenty of people who have recurred well after the 5 year mark. Some were initially diagnosed stage 2.

    The fact of the matter is the oncologist are over worked in a very depressing industry or field and really dont know. So much of it is guess work.

    5 or 10 years ?
    After my colon cancer resection in 2006, they said that the tumor had probably
    taken 7-8 years to grow as large as it was. For 7-8 years, I had no signs
    of any serious illness, much less "cancer"; I didn't worry about what I didn't
    know about...... None of us did!

    Now, years after diagnosis, and even having been "cancer free"since 2006,
    the fear of recurrence is still alive; that fear never really "goes away".

    But we can and should live life as fully as we had prior to diagnosis.
    We didn't know what was lurking within us prior to our diagnosis,
    yet it didn't stop us from living life, so why should it stop us now?

    Cancer may be considered a terminal disease, but let's face it, life
    itself is terminal; it does not go on forever.

    Do we stop living life because we are afraid that our life may end
    un-expectantly on a highway, or in a diner?

    Recurrences can occur at any time. Five or ten, or 20 years
    of "clean reports" really doesn't matter, what really matters, is how
    much we've decided to live in spite of it all.

    Keep your eyes on the horizon, not at the grave!

    Best hopes to all,

    John
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #35
    John23 said:

    5 or 10 years ?
    After my colon cancer resection in 2006, they said that the tumor had probably
    taken 7-8 years to grow as large as it was. For 7-8 years, I had no signs
    of any serious illness, much less "cancer"; I didn't worry about what I didn't
    know about...... None of us did!

    Now, years after diagnosis, and even having been "cancer free"since 2006,
    the fear of recurrence is still alive; that fear never really "goes away".

    But we can and should live life as fully as we had prior to diagnosis.
    We didn't know what was lurking within us prior to our diagnosis,
    yet it didn't stop us from living life, so why should it stop us now?

    Cancer may be considered a terminal disease, but let's face it, life
    itself is terminal; it does not go on forever.

    Do we stop living life because we are afraid that our life may end
    un-expectantly on a highway, or in a diner?

    Recurrences can occur at any time. Five or ten, or 20 years
    of "clean reports" really doesn't matter, what really matters, is how
    much we've decided to live in spite of it all.

    Keep your eyes on the horizon, not at the grave!

    Best hopes to all,

    John

    Thats a very good point
    Thats a very good point john. My first oncologist told it had been growing in me for a absolute minimum of 5 years before i was diagnosed. I had forgotten about that. I agree with what you are saying about living life. I try to do the same. In fact i started a business 3 years ago after my first recurrence. Every big life decision i make does give me more pause before i make it now.
  • Psalm37bl
    Psalm37bl Member Posts: 25
    #36
    John23 said:

    5 or 10 years ?
    After my colon cancer resection in 2006, they said that the tumor had probably
    taken 7-8 years to grow as large as it was. For 7-8 years, I had no signs
    of any serious illness, much less "cancer"; I didn't worry about what I didn't
    know about...... None of us did!

    Now, years after diagnosis, and even having been "cancer free"since 2006,
    the fear of recurrence is still alive; that fear never really "goes away".

    But we can and should live life as fully as we had prior to diagnosis.
    We didn't know what was lurking within us prior to our diagnosis,
    yet it didn't stop us from living life, so why should it stop us now?

    Cancer may be considered a terminal disease, but let's face it, life
    itself is terminal; it does not go on forever.

    Do we stop living life because we are afraid that our life may end
    un-expectantly on a highway, or in a diner?

    Recurrences can occur at any time. Five or ten, or 20 years
    of "clean reports" really doesn't matter, what really matters, is how
    much we've decided to live in spite of it all.

    Keep your eyes on the horizon, not at the grave!

    Best hopes to all,

    John

    LOVE THIS POST!

    LOVE THIS POST!

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