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Still Worried

Btrcup's picture
Btrcup
Posts: 287
Joined: Jun 2004

Hi all, again I want to express my gratitude for all the support and advice you all have given me and my husband. I know I should be estatic over the results of hubby's scans, but I am still worried. I have read so many articles about Stage IV colon cancer and the treatment using Avastin. Most of the articles use the words "prolong life" and "20.3 month survival rate". What are the chances of this monster coming back? His scans showed "no evidence of disease" but I am still so worried. Scott (my hubby) doesn't ask his onc many questions and since I do not go with him to his chemo treatments (only consultations), I cannot ask the questions myself.

Scott has said I can be a negative person sometimes (I tend to think the worst), but I can't help it. I know that if I discuss this with him, he will only say it is the negative coming out of me. I am the type of person who wants to know everying (hence being on the internet all the time).

Just to recap, Scott's tumor was removed from the ascending colon (along with 10 in of large and 10 in of small colon)in Feb. He had mets to 11 of 21 lymph nodes (I think) and greater omentum. I have read that lymph node involvement is not good. Now today he is complaining about stomach ache and the nasty taste he has in his mouth. He mentioned the word "blood" in his mouth, but when I questioned him, he just said he meant nasty taste (he doesn't always tell me everything because he knows I will worry).

I know I am probably just driving myself crazy, but that's just me! Any advice would be greatly appreciated.

Prayers and thoughts are with you and your loved ones.

Linda

carmen07
Posts: 120
Joined: Apr 2004

Hi Linda
I too also worry about my husbands cancer stage 1v coming back even though he had the last hopefully of the cancer spread to his liver removed.
I did read when the drug Avastin came out this year about the lady (stage 4)who was told she had 6 months to live and she went on Avastin as a trial over 6 years ago, and is alive today.
So I don't totally believe in the 20 month rule and I really don't feel that they can put a time table on anyone.
I pray and hope that they will come out with more new drugs that will hopefully cure.
I understand your fear and my husband also does not ask questions to his oncologist.
I hope he is on a chemo break. Enjoy each day and try to stay positive because he did respond to the chemo and their are some patients that do not respond.

mozzer
Posts: 5
Joined: Jul 2004

Hi there! Firstly, don't be daunted by trying to find out what you can - it isn't negative, just practical! I know what you must be going through as my husband recently died from colon cancer after a brave battle. In his case, it was diagnosed way too late, so the chemo he was offered was merely to attempt to prolong his life. Who knows if it did? but anyway, he had good quality for months which was so important to him. I can understand why your husband is reluctant to perhaps tell you everything that he's feeling in terms of symptoms - my husband was the same, he just didn't want to worry me or burden me with even more concerns! Also, there was an element of 'I am too frightened to know' which I had to accept and respect. It was very important for him to keep positive - I think your husband sounds very similar and it is a good way to be! Of course you will fret and research - I was /am exactly the same! I used to drip feed my husband the odd bit of info very casually if I felt it was relevant or would benefit him knowing it in a positive way...maybe you could try that tactic with yours. It may enable him to ask a few moer questions of his medics in the long run and perhaps allay some of your fears...
In any case, it sounds like you are doing a wonderful job - he will be appreciating it, more than he'll be able to express. So take heart, and take good care of you and yours X

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hullo Linda.I guess your husband has the feeling of "what you don't know won't hurt you" in relation to telling you exactly how he feels.Thats not unusual.I am stage 2 colon cancer survivor(4 months in remission) and was admittedly selective in what I told my wife, Jen.Just knowing I had cancer was really enough for her to handle--but that was my opinion.Eventually as I came to terms with cancer I told her more and more--although many of the side effects I had from chemo I kept to myself.
It is funny tho--her girldriend told me that Jen really new more than I thought she did.I really think that your hubby would ask the right questions of his onc. if he was really concerned about any of the symptoms you described.Having said that, the nasy taste is a normal side-effect to chemo in a lot of cases.Mouth ulcers are too although any bleeding should be looked into.
Is he still doing chemo now?
How long ago was his surgery?
My surgery was in aug. 03 and I was cut from pubic bone to breast bone.Even now I still have a sore abdomen--but the doc. said this is not unusual as tummy muscles take a long time to get back to normal after such a major surgery.
Hubbies pains can be caused by many things and really need to be reffered to his doc. to check things out.I guess your hubbie has to make that decision but after all he has been thru I think he would do that if he was really concerned--I know I would.
I know it is difficult for you Linda--that comes from the worry of a loving wife I guess--I hope he has any problems looked into--for his sake and your peace of mind.
All our very best--kanga n Jen

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Linda,
A friend who is a physician once told me that any time there is blood without an injury it needs to be looked into. Not that it is always something "bad" just that it is unusual and should be checked. I am sorry it is so hard for you but you are right to be vigilant especially if your husband is tending to let things slide. Continue to be his advocate as much as possible but don't worry over those statistics. They are numbers that do not in any way directly relate to your husbands case. They are a compendium of thousands of cases.
Hugs,
Taunya

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