First visit with Surgeon since surgery

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idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
Got staples out today... that feels much better. Doc set me up with 1st onc. appt, 1st radiologist appt., and a PET scan appt. He said I am going to be getting a heavy dose of Chemo & radiation as well. Do they do this at the same time? My tumor was about the size of a racquette ball and extended outside the colon and onto the abdomin wall. They put pins there to mark for radiation zapping. Am I gonna lose my hair? If so, how long into Chemo can I expect it to start falling out? I have always had waist length hair.... always...so this will sadden me. I asked my doc today if i will ever be "healed". Of course he said there is no way of knowing that now but everything looks really good. I love hearing from people on here that they are cancer free. I am scared to death to go get that PET thing. Scared they are going to say "oh my god...we found some more somewhere else" I don't know if i could take that. Right now I am feeling real lucky and blessed that things have gone this good. If anyone has suggestions on dealing with chemo and radiation please share with me. When I am done with all that ...then what? What do they do with you after that?

Jennie

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    First of all Breathe.........
    Yes, its a whirlwind of questions and appointments and the lot. You should first gather your wits and then move from one step to the next and not all at the same time, it is overwhelming unless you slow down and relax and take whatever is thrown at you. For the most part, treatment for colon cancer mostly doesn't leave you with your hair falling out. (and I did say mostly) some it does but most just suffer from a thinning. You may be on 5fu(chemo) along with your radiation which inhances it to get the most out of it. Most going through radiation have diahrerra from slight to bad but immodium usually handles that well. Then there is the sunburn effect on the spots that "rarely ever see sunshine".."Aquaphor" will generally take care of that...

    A Pet Scan is a nuclear scan that will illuminate most all cancer that is in your body. This will allow the Onc to assure that everything is being taken care of and nothing is missed...I think that a PET scan catches anything a centimeter and bigger,(please correct me if im wrong). It has been known to light up scar tissue from surgeries but that should be distinguished from cancer cells through testing.

    Normally your chemo is infused into you by a port that has been out patient surgically implanted into your chest area and you will probably wear a fanny pack that has a pump. Some wear it all 5-6 weeks of radiation. Some get it off on the weekends. That is dependant on your Onc .

    Some have the Rad/Chemo before surgery, some after. Yours being after the PET will show anything else that needs to be zapped...Hopefully minimal...Medicine is getting better everyday and so are survival rates, so just take your time and BREATHE....and you'll do fine........
  • Shayenne
    Shayenne Member Posts: 2,342
    Options
    Buzzard said:

    First of all Breathe.........
    Yes, its a whirlwind of questions and appointments and the lot. You should first gather your wits and then move from one step to the next and not all at the same time, it is overwhelming unless you slow down and relax and take whatever is thrown at you. For the most part, treatment for colon cancer mostly doesn't leave you with your hair falling out. (and I did say mostly) some it does but most just suffer from a thinning. You may be on 5fu(chemo) along with your radiation which inhances it to get the most out of it. Most going through radiation have diahrerra from slight to bad but immodium usually handles that well. Then there is the sunburn effect on the spots that "rarely ever see sunshine".."Aquaphor" will generally take care of that...

    A Pet Scan is a nuclear scan that will illuminate most all cancer that is in your body. This will allow the Onc to assure that everything is being taken care of and nothing is missed...I think that a PET scan catches anything a centimeter and bigger,(please correct me if im wrong). It has been known to light up scar tissue from surgeries but that should be distinguished from cancer cells through testing.

    Normally your chemo is infused into you by a port that has been out patient surgically implanted into your chest area and you will probably wear a fanny pack that has a pump. Some wear it all 5-6 weeks of radiation. Some get it off on the weekends. That is dependant on your Onc .

    Some have the Rad/Chemo before surgery, some after. Yours being after the PET will show anything else that needs to be zapped...Hopefully minimal...Medicine is getting better everyday and so are survival rates, so just take your time and BREATHE....and you'll do fine........

    Damn, that was great Buzzard!
    ....seeing your typing was greatly blessed, I am glad you are here :)

    hugssss!
    ~Donna
  • tiny one
    tiny one Member Posts: 465 Member
    Options
    treatment
    I had a mediport put in and received chemo constantly for 5 1/2 weeks in addition to radiation. My course was 5FU or folfox. I didn't lose my hair, it just thinned a little. I had 2 weeks off and then 6 months of chemo. they did oxiplatin 2 times a month. My side effects were pretty mild. I was able to stay active all during this. I had stage 3 colon cancer with one lymph node testing positive. I've been cancer free since Feb 07. After treatment is done, the hard part comes. You have screenings. They usually do colonoscopies. They do CAT scans and pet scans. Your oncologist will usually determine how often he thinks this is necessary. He should be able to tell you if you'll lose your hair.
  • dixchi
    dixchi Member Posts: 431
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    Afterwards
    Buzzard did such a good job of answering your questions, I will
    try to just add a little on the afterwards.....after chemo and
    rad, you will be followed by scans and bloodwork to see if things
    are staying normal.....I am checked every three months and so
    far, thank god, I am cancer free. But there is always the pre-scan
    anxiety and fear that ca has returned, that is normal....it helps
    to find some form of relaxation exercise....meditation, practicing
    taking deep breaths, imagining yourself well and healthy like you
    were before.....all the emotional stuff is almost as much of a
    challenge, if not more, than the physical aspects.

    Hair....well, sometimes the thinning is enough to go ahead and
    say "bald"....I have always been particular about my hair and
    regularly colored it my natural color of brown to cover the
    grey/white.....it probably says something about our society
    that isn't so good, but we do define ourselves by our hair...
    I wore a wig at first, it was ok, but now that it is getting
    hotter, I don't want to wear it. My hair has pretty much
    come back....treatments stopped last December...and it is
    a fairly good looking snow white in the front and a mixture
    of darker mixed with white in the back....I decided I deserved
    every one of those hairs after what I had been through the
    past year and my 50th high school reunion was coming up and
    so I went "a la naturelle"....without wig.....had it cut
    and styled....and got some good reviews back....so I think
    I have decided to face the reality of where I am in life
    and be myself. The American Cancer Society has a wonderful
    program called Look Good, Feel Better that is a couple hours
    session with a beauty consultant in a group....they give you
    a nice bag with all kinds of cosmetics to take home and
    suggestions about hair and makeup and it's great for morale boost.
    The ACS also has a website where you can purchase wigs and
    hats and scarves at great prices and nice styles.

    Hope this helps,
    Barbara
  • dixchi
    dixchi Member Posts: 431
    Options
    Hair
    P.S. tlcdirect.org is the address for the ACS site that
    has wigs, scarves and hats....I could kick myself for
    not going to that first...I paid a stupid amount of money
    for my first wig and these are inexpensive and just as good
    and their styles are great....not much of a hat or scarf
    person but they have some gorgeous ones.

    Barbara
  • Julie 44
    Julie 44 Member Posts: 476 Member
    Options
    dixchi said:

    Hair
    P.S. tlcdirect.org is the address for the ACS site that
    has wigs, scarves and hats....I could kick myself for
    not going to that first...I paid a stupid amount of money
    for my first wig and these are inexpensive and just as good
    and their styles are great....not much of a hat or scarf
    person but they have some gorgeous ones.

    Barbara

    Breath
    Jenny,
    Just like the wise Buzzard has said take a deep breath and relax...As you think of things write it all down...Remember not to take everything you read on the internet to heart..People on the board are telling you what we have been through but other sites seem to tell you just about everything..So don't get all wound up until your Doc tells you whats what...Take one step at a time sometimes take one minuet at a time...Just follow what your doc says and don't read to much into it...It is very confusing and scary but as you go along it will get less confusing and scary...Good Luck keep posting cause we all help as much as we can and RELAX......JULIE
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    One step at a time
    Jennie,

    Take it one step at a time. I'm glad your doctor said things looked good-take him at his word!We'll be looking forward to hearing how things go every step of the way.

    *hugs*
    Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Options
    What to expect
    Hey Jennie... good to see you posting again. I had a very similar situation as yours, with the tumor perforating the intestinal wall and in my case, the tumour didn't attach itself to the abdominal wall, but the abscess that formed around the tumour did. So, as I mentioned in another post, my surgeon had put metal clips in the abdominal wall for marking the area for the radiation.

    Chemo/Radiation: Yes, you will get them at the same time, although the chemo treatments go longer than the radiation. Chemo, you will most likely be on for 46 hours every two weeks. The radiation will be a Mon - Fri schedule for 5 or 6 weeks. When I did the radiation, my onc changed me from the infused chemo via my port to an oral chemo (pill form) to make it more convenient and comfortable for me. She wanted the chemo to still be in my system, but didn't want to make it hard for me to do both at the same time (in case I had any side affects with the regular infused chemo).

    Are you going to lose your hair? Probably not, but you will notice it thinning. In my case, I did not have hair down to my waist like you do, but at the time my hair was just below my shoulder blades. It FELT like it was coming out by the handfuls when I would shower... don't let that upset you. Now *I* noticed that it was much thinner, but none of my friends noticed. They all would comment on, "Wow... you haven't lost any of your hair!!" Well, yes I did but because I had so much of it, the hair that I did lose then just made me look like I had a normal amount ;) I have since cut my hair short, and the thickness has all grown back in... and it is MUCH healthier!!

    PET scan: Don't be afraid of it. A scan is a scan is a scan. As to what they will or won't find... whatever it is, it will be a good thing. If they DO find some thing that you weren't planning on, then be thankful and thank the universe that it was found because now it can be treated. If you don't have a scan (like all our family and friends who have not been dx'd) you would never know what may be lurking on the inside. They will inject you with a very small radioactive isotope which is like a radioactive glucose. You then will sit in a comfy recliner type chair and relax for an hour while this glucose goes through your whole system... then they will do a scan from head to knees. If there is any cancer or infection, the radioactive glucose will adhere to those cells. A PET scan checks on the molecular level so it can pick up very small spots... it is not like a CAT scan or an XRay. Cancer is fast growing cells so that is what attracts the isotope. It was the PET scan that found the cancer on my adrenal gland as well as a 5mm (very small) spot on my lung. It did not pick up the other spots on my lung because they were not metabolically active. It is GOOD to have a PET scan right now when you start because it can be used as a base scan. They will know exactly what they are dealing with at the start. And then, down the road after you are finished your chemo, if they decide they want another PET scan, they would have this first one to compare it to.

    You say you are feeling real lucky that things have gone as good as they have for you so far. Well, there's no reason not to keep feeling that way :) There is no reason that you won't just sail through the chemo and radiation. Here I am, 2 years this month after the radiation and 18 months after I finished the chemo. I am not NED because we know there are these nodules in my lungs.. we just don't know how many will be cancer since there is no metabolic activity at the moment. My next CAT scan is July 20th... and with a little bit of luck, they will find they still aren't doing anything ... if they are, then we will decide on treatment when it's needed.

    So, you just have to take it a treatment at a time and I think once you get started you are going to be pleasantly surprised that it's not as bad as your imagination makes it out to be :)

    Hugggggggs,

    Cheryl
  • ldot123
    ldot123 Member Posts: 272
    Options

    What to expect
    Hey Jennie... good to see you posting again. I had a very similar situation as yours, with the tumor perforating the intestinal wall and in my case, the tumour didn't attach itself to the abdominal wall, but the abscess that formed around the tumour did. So, as I mentioned in another post, my surgeon had put metal clips in the abdominal wall for marking the area for the radiation.

    Chemo/Radiation: Yes, you will get them at the same time, although the chemo treatments go longer than the radiation. Chemo, you will most likely be on for 46 hours every two weeks. The radiation will be a Mon - Fri schedule for 5 or 6 weeks. When I did the radiation, my onc changed me from the infused chemo via my port to an oral chemo (pill form) to make it more convenient and comfortable for me. She wanted the chemo to still be in my system, but didn't want to make it hard for me to do both at the same time (in case I had any side affects with the regular infused chemo).

    Are you going to lose your hair? Probably not, but you will notice it thinning. In my case, I did not have hair down to my waist like you do, but at the time my hair was just below my shoulder blades. It FELT like it was coming out by the handfuls when I would shower... don't let that upset you. Now *I* noticed that it was much thinner, but none of my friends noticed. They all would comment on, "Wow... you haven't lost any of your hair!!" Well, yes I did but because I had so much of it, the hair that I did lose then just made me look like I had a normal amount ;) I have since cut my hair short, and the thickness has all grown back in... and it is MUCH healthier!!

    PET scan: Don't be afraid of it. A scan is a scan is a scan. As to what they will or won't find... whatever it is, it will be a good thing. If they DO find some thing that you weren't planning on, then be thankful and thank the universe that it was found because now it can be treated. If you don't have a scan (like all our family and friends who have not been dx'd) you would never know what may be lurking on the inside. They will inject you with a very small radioactive isotope which is like a radioactive glucose. You then will sit in a comfy recliner type chair and relax for an hour while this glucose goes through your whole system... then they will do a scan from head to knees. If there is any cancer or infection, the radioactive glucose will adhere to those cells. A PET scan checks on the molecular level so it can pick up very small spots... it is not like a CAT scan or an XRay. Cancer is fast growing cells so that is what attracts the isotope. It was the PET scan that found the cancer on my adrenal gland as well as a 5mm (very small) spot on my lung. It did not pick up the other spots on my lung because they were not metabolically active. It is GOOD to have a PET scan right now when you start because it can be used as a base scan. They will know exactly what they are dealing with at the start. And then, down the road after you are finished your chemo, if they decide they want another PET scan, they would have this first one to compare it to.

    You say you are feeling real lucky that things have gone as good as they have for you so far. Well, there's no reason not to keep feeling that way :) There is no reason that you won't just sail through the chemo and radiation. Here I am, 2 years this month after the radiation and 18 months after I finished the chemo. I am not NED because we know there are these nodules in my lungs.. we just don't know how many will be cancer since there is no metabolic activity at the moment. My next CAT scan is July 20th... and with a little bit of luck, they will find they still aren't doing anything ... if they are, then we will decide on treatment when it's needed.

    So, you just have to take it a treatment at a time and I think once you get started you are going to be pleasantly surprised that it's not as bad as your imagination makes it out to be :)

    Hugggggggs,

    Cheryl

    Well said Cheryl
    Hi there,

    Cheryl and Buzzard (welcome back by the way) said it well. I know when I started treatment, I wondered how I would get through it, but I did. You can too. There are tons of good news stories in fighting this. No reason why your story can't be too.

    Cheers, Lance
  • Shayenne
    Shayenne Member Posts: 2,342
    Options
    Buzzard said:

    First of all Breathe.........
    Yes, its a whirlwind of questions and appointments and the lot. You should first gather your wits and then move from one step to the next and not all at the same time, it is overwhelming unless you slow down and relax and take whatever is thrown at you. For the most part, treatment for colon cancer mostly doesn't leave you with your hair falling out. (and I did say mostly) some it does but most just suffer from a thinning. You may be on 5fu(chemo) along with your radiation which inhances it to get the most out of it. Most going through radiation have diahrerra from slight to bad but immodium usually handles that well. Then there is the sunburn effect on the spots that "rarely ever see sunshine".."Aquaphor" will generally take care of that...

    A Pet Scan is a nuclear scan that will illuminate most all cancer that is in your body. This will allow the Onc to assure that everything is being taken care of and nothing is missed...I think that a PET scan catches anything a centimeter and bigger,(please correct me if im wrong). It has been known to light up scar tissue from surgeries but that should be distinguished from cancer cells through testing.

    Normally your chemo is infused into you by a port that has been out patient surgically implanted into your chest area and you will probably wear a fanny pack that has a pump. Some wear it all 5-6 weeks of radiation. Some get it off on the weekends. That is dependant on your Onc .

    Some have the Rad/Chemo before surgery, some after. Yours being after the PET will show anything else that needs to be zapped...Hopefully minimal...Medicine is getting better everyday and so are survival rates, so just take your time and BREATHE....and you'll do fine........

    Edited....
    was a duplicate..sorry!