Recently Diagnosed Husband

brookeawesome29
brookeawesome29 Member Posts: 3 Member
edited October 2023 in Stomach Cancer #1

Hello,

My husband was diagnosed with stomach cancer on July 10th. This diagnosis started with back pain in early June which progressively got worse over 12 days, when he went to the doctor the pain was initially diagnosed as kidney stones and he was to await a CT scan. The next day 6/16 he was in such extreme pain he could not walk and we went to the emergency room. The ER thought there was a blockage to the bladder so they installed a catheter. The catheter did not help and we returned to the ER the following day. At this point the kidneys were on the brink of failing and he was admitted to the hospital for 3 days, had emergency surgery to install nephrostomy tubes and bags and ultimately not find the blockage in any CT scans.

At the end of the next week (6/30) his primary care doctor informed us a mass in the stomach was noticed on the most recent CT scan. An upper endoscopy was conducted on 7/5 for a biopsy and we received the biopsy results on 7/10 that the tumor is cancer. On 7/20 we met with the oncologist and they informed us the cancer is stage 4 based on the impact to the ureters and the kidneys/bladder. The oncologist said the cancer was incurable because it has spread to the peritoneal, the plan was chemo to extend as much time as possible and he has 1-2 years of life at most.

This was the worst news we could possibly have received. We got married in October 2022, he moved here from Australia in September 2022 and I am pregnant with our first child.

We received 2 additional opinions from City of Hope and UCSD and had better outlooks based on the PET scan not showing spreading to other organs. However our insurance is not accepted by either of those providers until I have the opportunity to change insurance during open enrollment

The port was installed today 8/15 and chemo was scheduled to start 8/17 however we found out the oncologist delayed starting chemo to 8/31 instead so it’s 2 weeks after the port installation. Therefore we would not have chemo started for almost 2 months after the diagnosis for an advanced and aggressive cancer. We are feeling very hopeless after this news, my husband feels like the oncologist is not communicating with us and is not invested in finding a cure because of the stage 4 diagnosis

Is this normal for the chemo to wait longer after the port? Also has anyone had a similar diagnosis? We are looking for any hope and intend to fight this!

Thank you for reading this long post,

Brooke

Comments

  • Craig48
    Craig48 Member Posts: 30 Member
    #2

    Brooke...

    I was diagnosed with stage 3 four years ago and am cancer free now. The chemo that they have available the last few years is so much stronger than it was five years ago it can be much more effective than it was previously for gastric cancer.

    I was 70 when diagnosed but in good shape and took the strongest chemo strength mix -- a strength for someone twenty years younger and then we even bumped that by 10 percent. The side effects were very intense but we wanted our best shot. You can read all the details in a thread I have below but all cases differ. You will have trouble supporting his worst side effects during chemo due to your pregnancy and you should be sure to find some supporting players now while he is still mobile.

    I believe my chemo started over four weeks after my diagnosis as they did surgical laparoscopic and other investigations. The chemo cocktail goes throughout his system so it can kill a lot of bad cells if most effective. Be sure to get pills for his nausea which will develop from the chemo.

    You are in our prayers and post again as you have more questions.

    Craig

  • Hcatheri
    Hcatheri Member Posts: 1 Member
    #3

    Dear Brooke,

    I am sorry that your husband and you have to go through this ordeal. I too have Stage IV stomach cancer with spread to the peritoneum. I had to wait about 7 weeks to start chemo but so far I have had a good response after 3 cycles. As you probably know by now, the chemo can be rough but you can work with your oncologist team to reduce most of the side effects. This is why you will want to have one that will listen to you. Change doctors if you must because this will become a long term relationship. From what I’ve gathered from other support groups, you also will need to meet with a surgeon who specializes in stomach cancer. Dr. Woo at City of Hope comes highly recommended as she is willing to do surgical procedures (Eg HIPEC) on Stage 4 patients. However, before this I would prioritize getting his kidneys and ureters healed. The chemo should help but have they suggested anything else?

  • mribes
    mribes Member Posts: 1 Member
    #4
    https://csn.cancer.org/discussion/326935/recently-diagnosed-husband

    Brooke I’m sure you were not planning to celebrate your anniversary or welcoming your 1st child under these circumstances… Also so far from home! My heart goes out to you…

    Hope your hb is doing well. I myself was diagnosed in Feb w stomach cancer and although it was very scary, now chemo, surgery and chemo post surgery is done. Celebrate each little accomplishment and get all the support you can get.

    I hope you find some hope and support here. Depending on the surgery your hb will have to re learn how to eat, and at first he may literally only tolerate baby food, which in your case is kind of an irony…

    Take care of yourself and your baby and don’t stop yourselves of celebrating that special anniversary, as a matter of fact, enjoy each day to the fullest!

    Warm regsrds,

    Maria

  • EGPharmDRx
    EGPharmDRx Member Posts: 1 Member
    #5


    Hi Brooke,

    I cam certainly relate. My husband and I met in 2009 and married in 2021. We built a life together and were trying to conceive. Then our lives were turned upside down when my husband was diagnosed with terminal stage 4 stomach cancer. He is still fighting the good fight but we don't know how much time we have left together. Doctors have said 1-2 years potentially.

    Despite having wonderful family and friends for support, no one can truly understand how it feels to have your whole life and future ripped away in an instant and just how isolating and lonely that is. It is scary to not know what the future holds and how I will survive alone.  

  • blanco55
    blanco55 Member Posts: 7 Member
    #6

    October16, 2024: hello Brooke. It is over a year now and hoping for some good follow up from you. My wife was diagnosed yesterday from biopsy and still waiting for first CT tomorrow. No staging yet, so very anxious. We are just beginning the journey. We are worried financially since we have a teenager and college coming. Anyone else have these concerns? Thanks for any hope and prayers.

  • brookeawesome29
    brookeawesome29 Member Posts: 3 Member
    #7

    Hi everyone,

    It has been over a year and quite a rollercoaster. Trent had 12 rounds of Folfox and a good response to treatment by the time our daughter Charlotte was born in February 2024 when we were able to change our insurance. At UCSD Trent’s oncology team referred him for a gastrectomy and in April Trent had a huge surgery where they found more cancer than they were expecting. Trent had no had chemo for over 2 months and the cancer blossomed however they proceeded with the surgery anyway. They ultimately removed his stomach, spleen, part of the colon, tail of the pancreas and 35 lymph nodes plus cutting any cancer they saw in the peritoneum. Trent had a tumor in his colon which was metastasized stomach cancer and not colon cancer as they initially feared. Trent was recovering in the hospital for 3 weeks initially, was home for 2 weeks then was re-admitted due to a fever that was from plural effusion. Trent was in the hospital for another 3 weeks and had chest tubes to drain the fluid and a picc line put in to receive nutrition since he was having a hard time eating. Trent started chemo again in the hospital because these additional issues were due to cancer growing again.

    Trent eventually came home and had a rough summer recovering, however now he is able to walk, drive, pick up Charlotte and eat in moderation. He does not have any tubes and his treatment is heading in the right direction. Trent’s oncologist is very optimistic because treatment is going well with the FOLFIRI chemo plan. The best advice we received was trusting our oncologist and medical team. Trent’s gastric surgeon said his recovery has been a miracle and we are grateful for everyday we have together.

    Thank you for all of the comments and support,

    Brooke

  • blanco55
    blanco55 Member Posts: 7 Member
    #8

    thank you for posting this!!I am new here, but happy to hear he is having a quality of life that many do not get! My wife just had biopsy news of stomach cancer and we are starting on the journey now.

  • Eedeelewis
    Eedeelewis Member Posts: 1 *
    #9

    I'm just now starting this journey myself. In September 2024 I went to the hospital complaining about black stools. After being given two pints of blood, and an endoscopy, I was told that I had a lesion in my stomach. The first biopsy showed no sign of cancer and I was told to follow up with my regular doctor when I returned to Washington. About two weeks later I was given a second endoscopy in Washington, whereas the new biopsy did show signs of cancer. Of course I was shocked, scared, and emotionally rattled. The doctor scheduled another PET Scan and CT scan., which I did about two weeks later. Right after the scans I spoke with a surgeon who told me that the cancer didn't seem to have spreed but he will have to perform a procedure to look at my stomach for verification and put a Port in my shoulder. This all happened really fast and I needed time to process it all. Hours later, I talked to the oncologist who told me I was stage 2 (for now) and they wanted to start me on 4 doses of chemotherapy, followed by surgery, then 4 more doses of chemo. I've been wrestling with the decision of no chemo and go all natural, but it's such a major decision. Any help is respected. Thank you.

  • Craig48
    Craig48 Member Posts: 30 Member
    #10
    https://csn.cancer.org/discussion/comment/1718967#Comment_1718967

    if you read through my posts my story is similar but with Stage 3. After treatment similar to what you are facing I am 5 plus years cancer free. Alternate treatments for gastric cancer make no sense to me. Read all my and others posts.

  • brookeawesome29
    brookeawesome29 Member Posts: 3 Member
    #11
    https://csn.cancer.org/discussion/comment/1718967#Comment_1718967

    Hi, I asked my husband since it's been his experience and he said to start treatment following the medical recommendation as soon as possible. Stomach cancer is so fast and aggressive. His chemo stopped working in September and his cancer amount has grown so quickly it's astounding. Please get treatment as fast as possible to prevent it from progressing.

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