Husband colon cancer returned to liver

spritaw
spritaw Member Posts: 4 Member
edited July 2022 in Colorectal Cancer #1

Hi everyone, we are a family living in Northern California. My husband (53 years old) was first diagnosed colon cancer in 2020 during a colonoscopy and since underwent colon surgery and 4 rounds of chemo ( last round June 2021).

In his follow up with Kaiser last month, his CEA was at 32 and the doctor ordered CT Scan. A mass (4.5cm*3.8cm) at his right side of liver was found. He then had a PET scan and a biopsy (result pending). This morning we had a video consul with Kaiser's liver surgeon. Even with the biopsy result pending, the doctor thought the chance of this mass being benign very small. Luckily we caught it early enough for surgery. I have a few questions though from the initial meeting:


  1. The amount of liver to be removed: The doctor said due to location of the tumor (in the middle ) , the entire right side of the liver need to be removed. I understand this could be medically necessary, and the liver can function with just the left side, but to be honest I still feel a bit excessive to take out the entire right side of the liver?
  2. The quality of care at Kaiser and if we should get second opinion: There seems to be mixed review of Kaiser in the bay area and our personal experience with Kaiser last year has been positive. The surgeon said this morning that it is the gold standard for my husband's case in term of treatment plan. ( We are looking at combination of chemo, surgery and liver ablation). I understand most people will encourage a second opinion, although I wonder how constructive will it be? We are a single income family and still paying the medical bill from last year. Our insurance is through my work, and at this time it is too late to switch to PPO plan which gives us coverage to hospitals such as UCSF. So even if we went out of network and got a different opinion, we will have to stick with Kaiser at least until the next insurance renewal window opens.
  3. Capacity after the liver surgery: We have a 5.5 years old boy who will start kindergarten next month. My husband's surgery has recovery time of 6-8 weeks. Not knowing to what extent my husband can operate, I am a bit lost on what to expect. I currently work full time, and my boss has been accommodating enough to let me work from home 3 days a week. There is also an overseas work trip planned in September which most likely be the recovery time for my husband ( I don't think I can and will go) . I want to be fair and honest with my work about my future capacity.
  4. Mental health for my husband and me: My husband has been struggling with anxiety and depression for years. I can only image what is going through his mind when the cancer returned. In your experience, what will be good for him? He has been taking CBD gummies on a regular basis. I also feel a lot of stress and have been having trouble sleeping. Any advice on stress management?

Thank you.

Comments

  • TomAsh
    TomAsh Member Posts: 15 Member
    #2

    Dear Spritaw,

    1. The liver is a rapidly self-renewing organ and even if 2/3 are lost it may fully re-grow. The surgeons will always have take out a margin of healthy tissue to remove potential micro-metastases. This should not worry both of you, but it is always advisable to seek a 2nd opinion (even within your HMO network at a different hospital (as long as from a very experienced internist or GI surgeon).
    2. I do not have personal experience at Kaiser (and have not lived in the Bay Area since 2006) but my uncle received top notch oncology and surgery treatment for prostate cancer in Redwood City just a few years ago. Extended family members also received top care at Oakland and Santa Clara branches since the 80's. Doctors at a research and innovation center might not only have the best interest of a patient in mind. Their goals may be more career and experience related. Combining research and practice may be very stressful and distracting. Doctors should be judged on number of treatments done successfully (medical outcome and quality of life after treatment), if they are honest about their knowledge and level of experience and having learned from mistakes.
    3. No experience with recovery from liver surgery, however I would never underestimate the need for time for idle, stress-free recovery.
    4. Your oncology team should assign a psychiatrist/psychologist to help with the tremendous emotional and mental challenges of dealing with cancer. It sounds like your husband might benefit from escitalopram or another SSRI, or SNRI - only an experienced psychiatrist should help your husband with medication. If your husband is assigned care, see if the provider is flexible enough to accommodate both of you in sessions. If there is no financial room for you to see a psychologist, try to create time just for yourself, a meditation class, yin yoga, or both; some quiet time with a friend who is a good listener. I personally couldn't make it without medication, cognitive-behavioural therapy, and gentle exercise after chemo. My wife talks with her own therapist, and we have couple's therapy now. She's doing better but the first 6 months after diagnosis took a toll. We have a 7.5 y.o. daughter. Shielding her emotionally from all that was/is happening to me was/remains very difficult.

    Wishing you both a lot of strength and patience, Tom

  • abita
    abita Member Posts: 1,152 Member
    #3

    I had my entire left lobe removed, and part of the right, and it grew back.

    That 8 weeks recovery isn't a guideline, it is a fact. I didn't think I was ever going to recover, and I felt miraculously better after that 8 week mark. There is definitely a schedule the healing follows. But I was fine after that 8 weeks.

    They will say pick up nothing more than 5 pounds. And that includes, say, opening a window that requires more than 5 pounds of force. Not following this can interfere with healing. Sorry if I am sounding so matter of fact, but if it were me, I would schedule the surgery so that you are home at that time.

    I was very bad off when diagnosed by my surgeon. I credit him with saving my life and giving me the strength to stay positive (most of the time) during this fight. I never had any doubt at anything he told me. I wish I had gotten a 2nd opinion for every other step of the journey so I recommend 2nd opinions.

    There are many support groups for caregivers. I suggest you look into those. It is so difficult, and you deserve to have some to talk to and help you work through how you feel.

  • spritaw
    spritaw Member Posts: 4 Member
    #4

    Thank you for your kind words Tomash and Abita. Since my last post, the biopsy result came back and confirmed it is cancer. We also explored alternative treatment method of Y90. The doctor who will be doing the Y90 told us the method is not well studied for colon cancer met to liver, as most treatments were given to people with original liver cancer. This doctor told us if he was in our shoes, he will go for the surgery. This is also the same recommendation from his oncologist, and colon cancer surgeon (who operated on him last year cutting out the tumor inside colon).

    So that is our plan, trying to get on surgery as soon as possible. I also have told work that I won't be able to travel in September and also need take some time off to care for my husband. With very little support from family and friends ( My family is in Asia and his parents are in their late 80s), we are utilizing this window before his surgery to prepare. Being in the US for 15 years, I unfortunately never get used to driving. Last year when he was down for colon surgery, I did most of grocery shopping on foot. This time, I was thinking to stock up supplies that is heavy, and bulky at least for the two months during his recovery.


    Emotionally, it has been difficult for everyone. My husband is not a very expressive man but I sometimes see him awake in the middle of night. Our son was crying outside our bedroom door yesterday when we had the video call with Kaiser for Y90 treatment. At the young age of 5.5, my son seems to understand what is happening to us. I can't bear the thought how our son will react if the worst is to happen to his father. I myself had the mixed feelings of sadness, helplessness , fear, anger and overall exhaustion. I know the journal ahead is difficult and we haven't even started, but the weight has been very heavy and overwhelming.


    Thank you all for listening and wish you good health.

  • TomAsh
    TomAsh Member Posts: 15 Member
    #5

    Never give up hope and be brave in trying novel approved treatments.

    Although in SF proper it was doable, I know how difficult it is to live without a car in the larger bay area. There are a number of budget options to get your driver's license i.e. seach on yelp for free driving lessons and, if that doesn't appeal to you, maybe try to find an electric cargo bike or trike?

    If obtaining counselling through a provider such as UCSF psycho-oncology is too much of financial burden, perhaps try something like the Shanti project at shanti dot org.

    Focus on the positives; that your husband is receiving continuing treatment, that as tough as it is there are goals to reach, that you are together as a loving family.

    Wishing you lots of strength

  • vivgrl
    vivgrl Member Posts: 34 Member
    #6
    https://csn.cancer.org/discussion/comment/1698192#Comment_1698192

    I hope you are doing well, Abita. You really helped me a few months ago. I agree re second opinions and wish I had gotten one earlier than I did.

  • abita
    abita Member Posts: 1,152 Member
    #7
    https://csn.cancer.org/discussion/comment/1698300#Comment_1698300

    @vivgrl I am glad I helped you. I had been trying to find a drug to work for me for a year, and three months ago, started lonsurf with avistan, and the first scan showed it working. I was really starting to worry. Who knows how long it will work, but glad it is.

  • vivgrl
    vivgrl Member Posts: 34 Member
    #8
    https://csn.cancer.org/discussion/comment/1698301#Comment_1698301

    I am so happy for you - really happy to hear that. I may be in your boat soon re drug options. So glad your first scan was positive - we all have to keep pushing forward and fighting.

  • spritaw
    spritaw Member Posts: 4 Member
    #9

    Hope everyone is having a good week. Tomorrow we are going to the in person consultation with the liver surgeon with surgery date 7/26. Some friends of friends said this surgeon was well respected in his field and we are glad the wait for surgery is too not long. Our son's Kindergarten starts Aug 9th.

    Hi Abita, can you share what you were able to do and not do during the 8 weeks recovery? Were you able to get up and go to the restroom? If I need go grocery shopping, do you think I can leave my son with my husband at home? We live about 10 minus walk from the elementary school, do you think the distance and duration is doable after a few weeks' recovery ? There is only one after school program on campus and they are already filled up for the fall.


    Hi TomAsh, thank you for your kind suggestion. Within walking distance, there are 4 grocery stores that can work for our day to day need. For stores like Costco, maybe we will do some stock up before the surgery. In a few occasions, I did drive but always had someone in the car with me. To me it is more of a mental block and lack of confidence despite having a license.

    Thank you for sharing resources for mental health. I realized this reoccurrence hit me a lot harder than the first time around. I was shut down for a few weeks and got into a really depressive mood. My husband at least on the surface is holding up better. In that regards, he is much stronger and more brave.

  • abita
    abita Member Posts: 1,152 Member
    #10

    It was 4 years ago, so I am having trouble remembering the specifics. I would be leery that there wouldn't be a need to lift a child of that age. I was told I was not allowed to pick up my cat. I also would ask the surgeon these questions. They know people have lives and need answers to prepare.

  • spritaw
    spritaw Member Posts: 4 Member
    #11

    We met with the surgeon yesterday and prepared a list of question including recommended diet before and after surgery. The doctor didn't think anything special need to be done and the patient is not that fragile in term of caring for himself. I will take that with a grain of salt and in the meantime, really appreciate if you can share your personal experience or advice.

    There was also pre-op bloodwork done yesterday and the creatinine came back out of range. The estimated glomerular filtration rate is 56 (standard range suggesting chronic kidney disease stage 3a. This is a devastating development. Could this be from the side effort of chemo?

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #12
    https://csn.cancer.org/discussion/comment/1698421#Comment_1698421

    Hi Spritaw, I had Kaiser in SoCal do two liver resections after my colon cancer metastisized. They were fast and efficient with this type of treatment, surgery is the ''gold standard'' and the liver rebounds well from taking parts. The specifics can be found in my background story [tapping on my blogname]. If it gets more complex, I'd find a teaching/researching facility. Down here that's UCLA or maybe City of Hope. Up there, I don't know though I recall Stanfor being mentioned. As for recovery, mine was fairly quick each time, and they cut me wide. You move slow, keep by pillows to hug, and hope not to need to cough or sneeze. I was mobile in a week or so, and cheated on the lifting rules, was working before a month was gone, which maybe grew the hernia that came with the first surgery and grew with the second. By then I was in my mid 50's. It was all scary stuff, and coping was a script for Xanax at first, lots of walking when able, mindfulness, meditation, and Stoicism as I studied on how to cope. I still use the techniques and, ocassionally the pill, but I'm 8 years out NED, and doing fine. Good luck to your man and you......................Dave

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