Just need support.....

Titangal65
Titangal65 Member Posts: 2
in Colorectal Cancer #1

Hi, my husband is 54 years old.  He had Stage 3B colon cancer 4 years ago, resection, and the chemo treatment.  Had to stop a little early because the one med caused him to go into diabetes and severe neuropathy on his feet and mild on his hands.  He was good for about 2 1/2 years.  He'd have scans and blood work done.  Then one month I saw that his CEA was 9.1.  It had been in the 4's.  I knew it was back.  The next month they told us it was.  He had surgery again, resection, and then covid hit.  The V.A. delayed and delayed any follow up treatment.  Did some scans and found it had spread to both lungs.  Finally sent him to another hospital to start chemo, 5 months after surgery.  They did one round of chemo and ordered more scans.  The 2nd hospital found a mass that the V.A. missed on a scan that showed a mass near his rectum.  He had been telling them he was in a lot of pain.  They started radiation.  Tomorrow is his last one after 25 rounds.  The pain is better.  He did ask the oncologist at the 2nd hospital his prognosis with all of this.  She basically told him 1 - 2 years from when it met.  I am beyond angry.  I don't understand the delays.  I don't think that it is normal.  They didn't do it the first time around.  Has anyone ever experienced these types of symptoms and had a good prognosis.  Just looking for some good new for a change.

Thanks

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited September 2020 #2
    I'm so sorry

    I'm sorry for your husband and all that he has gone through.  It's a shame that there was a misdiagnosis.  You can try to obtain another opinion which might confirm or change his prognosis.  Don't let any doctor give any deadlines on time, everyone is different and no one should be put in a time frame.  There are people on here that have gone through so much and they are still here.  Hope you can get some answers that you are looking for from the doctors.  Wishing your husband well.

    Kim

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Welcome to the forum

    I am sorry for your husbands recurrance, and for the delays and that a mass was missed.

    I have been horrified to hear about treatments being postponed becasue of COVID. My own Rad Onc is only doing tele calls - luckily I'm well past needing him at this time. 

    There are many of us who have had recurrences, and are alive to tell the tale.  Many do not visit the forum anymore, so you won't hear from them. Others, pop in now and again, and I hope they respond to your thread, because I know how much you need that positive feedback. 

    Though it is hard, I would ignore any statement of time. I was given the five year talk. I am heading for seven. We are all different, and while Cancer may whisk us away, it could be next week, it could be 25 years away.

    I will tell you now about my friend. Her dad was given a year - he had Pancreatic Cancer. He was doing really well, and responding to treatment, when his year came up. My friend went to visit him, to find him sitting in his chair and in decline. On her last visit, he was out fishing and doing what he loved. She asked what was wrong and he told her - and this is truth - 'My year is up'.  He just literally gave up becasuse the Doctor's told him one year. He didn't go fishing. He didn't go out, he sat in his chair and gave up. He died!

    I beleive that the mind is a powerful thing, use it for good.  

    Be totally proactive with the medical team. Push them when they need pushing. Get all questoins answered. 

    Tru

     

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #4
    Hi

    Hi

    Sorry to meet under these circumstances. Your husband's situation was very similar to mine. I went to several doctors before one suggested colonoscopy, which wasted several years. I was thought to be T2 at first and later a scan showed a liver tumor. After surgery and chemo, docs thought all was well but my CEA was at 4, which was abnormal for me. Sure enough, next MRI showed four mets to liver, CEA was at 9. I had surgery within a few weeks. Surgery was a success but thois cancer is aggressive, we will see what happens.

    I don't know what the situation is where you live but here the doctors were seeing all cancer patients with extra precautions despite COVID concerns. I can't speak on VA policy (would lead me to just rant about Trump anyway) so I don't know.

    My docs just got samples from me to be sent off for molecular testing to see if I am eligible for any immunotherapy for solid tumors (MSS stable). Has anyone mentioned this to you or your husband? If you are near a university hospital with a good reputation you may want to go there and ask, I think perhaps doctors who are teaching and researching may be more interested in this. You may be eligible for trials. I know it might sound strange to people but not all doctors think about these options.

    I hope for the best.

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