New Here,,,rectal with mets ,,,,

Doreen65
Doreen65 Member Posts: 52
edited March 2014 in Colorectal Cancer #1
Hi everyone, I wanted to introduce myself and let you all know what I have been through in the last year. My name is Doreen and I was 39 at my diagnoses. I was diagnosed last Feb. o4 with a rectal mass about 2 cm. low in the rectum it had metasitized to my liver. I believe I had 3 spots on my liver two of which went completely away with chemo. The third I was able to have a liver resection on January 4th 2005. I had chemo from last April 04 8 rounds.......Oxaliplatin, 5fU and Leuvicorin excuse my spelling if these are wrong. I also had Neupogen shots all through my treatments to keep my white blood cell count up. Last September 04 for 28 straight days I had continuous infusion of 5-FU while doing radiation for the rectal mass. Radiation was no big deal until I hit my 17th day on and my skin started to burn off. I toughed it out for those last 11 days and tried every creme on the market. Warm water baths were my relief. I actually ate dinner in the tub many nights.... :o(
In January 05 I had my liver resection they removed part of the right lobe of my liver. They told me they felt it was pretty sucessful and did an ultrasound while they were in there. After my surgery I believe (I have a hard time remembering it clearly I think we block it out) 5 weeks later I started back on chemo for 4 more rounds to make 12 all together. The last 4 were the hardest for me just making me really tired. I was nauseous but never threw up Zofran helped. To the colo/rectal surgeon's amazement the rectal mass has dissappeared. He tells us requiring no surgery. To this day this still scares me. Lets see since surgery I had a Pet Scan in April which was clear thank you GOD. I have had two blood tests so far first CEA was 1.8 and my last one was done two weeks ago and my CEA was 1.1. Last Monday I had to go for a MRI I was terrified to say the least and they called to say that was normal also. I know I should be so happy with all of this but I am still terrified. I have to go in two weeks again to go see the colo/rectal surgeon so he can check to see if the rectal mass is still gone. He explained to my husband and I about his theory on doing an operation in that area that may not be necessary. He felt 100% postitive that if he removed my rectum and sent it off to a pathology lab there would be no cancer. How would you all feel about not having surgery to remove that area? I am just so afraid because they didn't do surgery the cancer may return there. I know I have written so much but it takes along time to write all I have been through. I really would like to hear from others that have shared my experience and of course from some long term survivors. I will say that through all of this I never once stayed home and sulked about it ....... My husband and I are very active people with three teenage children so we are always on the go. Geesh I even stained my deck last summer with my continuos infusion pump attached to my waist. LOL Well I have written enough and if I've forgotton something I will add it. If anyone wants to contact me they can do so at Ymeraner@aol.com. Doreen....

Comments

  • chynabear
    chynabear Member Posts: 481 Member
    #2
    Welcome to the site, Doreen. You will find that this is a great place to vent, go to for advice, share news, and meet some great people.

    As for being fearful that they are not going to do surgery, I can see where you are coming from. Ultimately, you are your best caregiver. If you are hesitant about any decision, get a second or even third opinion.. whatever it takes to ease your mind.

    My opinion, if they don't feel surgery is necessary, that is good. That means that the chemo and radiation did their job very well. I would also recommend reading back a few pages on this board. We have a few Stage IV dx where the decision was made to change lifestyle and diet and not go through chemo or radiation. And guess what. They are now receiving NED (No Evidence of Disease).

    Our bodies are pretty amazing. I am reading "Curing Cancer with Nutrition" by Dr. Quillin and have learned that most adults have cancer (which is nothing more than an abnormal cell) an average of six times. However, only forty percent are ever diagnosed. This is because of our amazing bodies and their immune system. Nutrition plays a large role in the immune system.

    So, your answer could be that a combination of your own immune system coupled with chemo and radiation has cured your cancer.

    Congrats on making it through your treatment with so much strength. It sounds like you have a fighting spirit, which also helps to move you towards NED.

    Patricia
  • Kanort
    Kanort Member Posts: 1,272 Member
    #3
    Hi Doreen,

    Welcome to our site and thank you for sharing your story with us. I can tell from your post that your spirit is strong and that you will do well.

    I second Patricia's advice about seeking a second opinion. I am so happy to hear that surgery was an option for your liver mets. I know you will be one of stage 4 survivor's to give hope and support to others of the same stage.

    Again, thanks for your post and welcome to our awesome group.

    Hugs,

    Kay
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #4
    Kanort said:

    Hi Doreen,

    Welcome to our site and thank you for sharing your story with us. I can tell from your post that your spirit is strong and that you will do well.

    I second Patricia's advice about seeking a second opinion. I am so happy to hear that surgery was an option for your liver mets. I know you will be one of stage 4 survivor's to give hope and support to others of the same stage.

    Again, thanks for your post and welcome to our awesome group.

    Hugs,

    Kay

    Hi Doreen and welcome to our "family". Don't take that word lightly Doreen 'cos it is true. The special bond we have here goes a very long way to helping us all cope. You sound like you have a "get up and go attitude" Doreen. Not an easy task but it is the ability to try and meet your circumstances head on and keep fighting that will help you overcome this crap.From your comments it seems that you have a loving family that are helping you to achieve the best results possible. This has gotta be tough on them and if you can be seen to be doing your best to fight cancer it will go a long way towards keeping your hubby and kids in a positive frame of mind. In turn that will keep you positive as well.
    Hopefully your onc. has your best interests in mind. He and your surgeon must be comfortable that your chemo has done a lot of good. Being afraid is understandable, having doubts is too. Talk to them both and be sure to vent your worries. If you still have doubts there is always an option for another opinion. I changed doctors for that very reason. All doctors vary in the way in which they approach things. You know your own body, you know how thing feel, make a decision based on "how you feel."
    All the best from your new ozzie friends, Kanga n Jen
  • BusterBrown
    BusterBrown Member Posts: 221 Member
    #5
    Doreen:
    Our stories are very similar. I was dx'd in Dec 04, with crc and liver mets. After 3 cycles of folfox the 3 lesions on my liver disappeared and have yet to return. On May 24th I had resection surgery, they removed about 6 inches of my sigmoid colon and so far so good. I had no complications from the surgery. I started Radiation about 3 weeks ago, I have four sessions to go, so far so good. I have approximately 2 more cycles of folfox to do, and after that I should be finished with my treatment and I hope to hear the remission from my Onc's mouth!!!
    I often wonder how it's going to be once I'm ned and I have to go in every 3mo's for checkups, will I freak out or will I be okay? I think it'll be the latter.
    Buster...
  • steved
    steved Member Posts: 834 Member
    #6
    Welocme Doreen. I was diagnosed with rectal cancer at about the same time but because I was stage three have been through less. Now jsut had my first year post op checks and remain all clear. Sstill scary though and I can appreciate your anxieties.
    The decision about not having surgery is not a common one but one that is growing as chemoa dn radiotherapy gets better and more effective. Certainly my surgeon who has done more rectal excision than anyone else in Britain (he develpoed the technique orignially) says he has seen quite a few wherer they did the surgery inly to find no cancer left. However if it is somehting you don't feel 100% comfortable with it may be best to get another opinion which is your right and should be fairly routine.
    let us know how yo get on and best of luck. You are now entering one of the hardest phases of getting your life back after all this time and the watching and waiting phase. it can be hard to accept after so much treatment that you just now have to sit and do nothing and see what happens. I'm sure you will cope well after all teh challenges you have faced in the last 18 months,
    Steve
  • taraHK
    taraHK Member Posts: 1,952 Member
    #7
    Hi Doreen,
    thanks for sharing your story. You have been thro a lot, and you sound very strong and positive.
    I was diagnosed with a rectal tumour Dec 02 age 43. Turned out to be stage 3 (one positive lymph node). I had chemoradiation then surgery then postsurgical chemo. Unfortunately, a few months ago (2 years after my surgery), they found a small tumor on my lung. I had that removed surgically and am now on chemo again (oxaliplatin, 5Fu and leucovorin -- as you had). But I'm still feeling strong and positive!

    I also had skin burn from radiation -- your message reminded me of that so much!

    I can understand your dilemna about surgery. In my case, although I had a good response to the chemoradiation, the tumour didn't completely disappear, so surgery was a must. You should be feeling great that you have responded so well to the treatment so far.

    I don't want to put a damper on your situation. But I need to tell you that I was influenced by a medical article I read (I don't have the reference to hand, but I could dig it up....). The study found that about 50% (if I remember correctly) of all rectal tumours which they thought had complete response clinically (that is, by doctor's exam had disappeared) in fact still had cancer cells when they were sent to pathology lab (the patients had all agreed to have surgery no matter what -- even if the tumour had 'disappeared'). Now, I'm not a doctor nor a cancer researcher -- the study may have had flaws and may be outdated (that is, surgery and chemo and radiation may have improved the situation a lot -- as Steved says). And I believe the decision is between you and your doctor. But if it were me in your shoes, I'd want to probe my doctor a little more on his 100% confidence. I hope I am not out of line in saying all this. It does sound like you are receiving very careful testing and monitoring -- all with terrific results -- and that may be the way to go. I certainly wouldn't wish the surgery on anyone unnecessarily!
  • chynabear
    chynabear Member Posts: 481 Member
    #8
    taraHK said:

    Hi Doreen,
    thanks for sharing your story. You have been thro a lot, and you sound very strong and positive.
    I was diagnosed with a rectal tumour Dec 02 age 43. Turned out to be stage 3 (one positive lymph node). I had chemoradiation then surgery then postsurgical chemo. Unfortunately, a few months ago (2 years after my surgery), they found a small tumor on my lung. I had that removed surgically and am now on chemo again (oxaliplatin, 5Fu and leucovorin -- as you had). But I'm still feeling strong and positive!

    I also had skin burn from radiation -- your message reminded me of that so much!

    I can understand your dilemna about surgery. In my case, although I had a good response to the chemoradiation, the tumour didn't completely disappear, so surgery was a must. You should be feeling great that you have responded so well to the treatment so far.

    I don't want to put a damper on your situation. But I need to tell you that I was influenced by a medical article I read (I don't have the reference to hand, but I could dig it up....). The study found that about 50% (if I remember correctly) of all rectal tumours which they thought had complete response clinically (that is, by doctor's exam had disappeared) in fact still had cancer cells when they were sent to pathology lab (the patients had all agreed to have surgery no matter what -- even if the tumour had 'disappeared'). Now, I'm not a doctor nor a cancer researcher -- the study may have had flaws and may be outdated (that is, surgery and chemo and radiation may have improved the situation a lot -- as Steved says). And I believe the decision is between you and your doctor. But if it were me in your shoes, I'd want to probe my doctor a little more on his 100% confidence. I hope I am not out of line in saying all this. It does sound like you are receiving very careful testing and monitoring -- all with terrific results -- and that may be the way to go. I certainly wouldn't wish the surgery on anyone unnecessarily!

    Tara, you bring up an interesting point about cancer cells remaining after it looks like they got it all. In "Beating Cancer with Nutrition," Dr Quillin states that when they say, "they think they got it all" what they are really saying is that they got all of the visible cancer cells. What that really means is that there are still likely to be as many as 10,000 cancer cells that are all as small or smaller than the page number in a book. What he says is that we have already beaten cancer many times before (again saying the average adult has cancer six times in their life) through our immune system.

    His logic is that Chemo and Radiation and Surgery all treat the symptoms of Cancer (tumor debulking) and it is our duty to better our immune systems through nutrition, excercise, and lifestyle improvements (especially environments and attitudes) to "change the underlying cause" of cancer.

    So, Tara, I would totally believe the study you read as other information sources are basically saying esentially the same thing.

    I can't emphasize enough the importance of "you being your best caregiver." Each of us have instincts and it is always best to follow those instincts. If your "gut" is telling you that you need to follow through with surgery, seek a second opinion... or third... or fourth. Whatever it takes to put your mind at ease that you have done everything you can possibly do to "beat" this beast.

    For me, I feel that my Oncologist team has given me the best "fighting chance" and it is now my turn to enter the fight by changing the underlying "cause" that the cancer was allowed to survive my immune system and grow/spread.

    One of my downfalls I had after being diagnosed was my inability to learn anything about cancer (I'm the type that has to learn everything I can about anything I'm involved in). When I would look at any information I would just break down because I couldn't look past the statistics. I made it through treatment strong and fighting, but I feel I could have done a better job had I been able to "take myself out of the equation" and look past the statistics to learn more. What I found is that after I finished treatment and was trying to get my life on course, the more scared I was about the cancer returning and leaving my husband and daughter behind.

    The point of my rambling is, the more information you have about what is going on in your body, the better decision you are going to make about what course of treatment is right for you. Read up and get a second opinion.

    Ramblingly yours,

    Patricia
  • HisJoy
    HisJoy Member Posts: 113
    #9
    Doreen,
    I can't really add anything to the excellent advice you're getting, but wanted to say WELCOME to our little forum here.

    I strongly support getting a second opinion on the surgery option, just to ease your own mind if nothing else. Secondly, fear adds stress and you will want to seek prayer, meditation, yoga or whatever to find some peace so that you don't worry about your health. A positive attitude is important.

    I also want to stress what others have said about nutrition and exercise. Eat fruits, veggies, and whole grains plus do some enjoyable exercise daily. (walking, swimming, whatever you enjoy and can do regularly)

    SO glad to hear your chemo and rads went well. You hang in there and stop by the discussion boards frequently. Also, check out the live chat, because there are usually people in there that you can get to know who have been down this route before.

    Best wishes,
    Bonny
  • taunya
    taunya Member Posts: 390 Member
    #10
    Hi Doreen,
    I was also diagnosed at 39, with a large lower rectal tumor (Feb. 2002). I totally understand your feeling that you want to be sure the 'area' is GONE!
    I would suggest a second opinion. Let your Doc know how frightened you are and that you need to be sure and comfortable with your decision. I am sure they will agree that the second opinion is a good idea. If not, then you REALLY DO need a second opinion.
    If your mind cannot rest without the surgery, GET IT. You have to live in that body and no one knows it as well as you. Follow your own instincts and you will make a good decision, whatever it may be.
    Good Luck and Best Wishes,
    Taunya

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