Uterine Serous Carcinoma

8675309
8675309 Member Posts: 7 Member
edited November 2023 in Uterine/Endometrial Cancer #1

Elected not to have Chemo. 

 is that the right decision?

scared......Help...

 

Atypical cells present, suspicious for malignancy Suspicious for carcinoma A. PERITONEAL NODULE, EXCISION: - Metastatic high grade serous carcinoma B. LEFT OVARY, BIOPSY: - Metastatic high grade serous carcinoma C. UTERUS AND CERVIX, BILATERAL TUBES AND LEFT OVARY, TOTAL HYSTERECTOMY, BILATERAL SALPINGECTOMY AND LEFT OOPHORECTOMY: - Uterus Progress Notes  BP: 128/87 Pulse: 100 Resp: 18 Temp: 36.8 °C (98.2 °F) ..Serous carcinoma, high grade - Myometrial invasion: 1.0 cm of 2.2 cm myometrial thickness (45%) - Lymphovascular invasion: Present, multiple foci - Leiomyomas, largest 3.0 cm - Cervix: No tumor - Left ovary: Metastatic high grade serous carcinoma, 1.4 cm - Bilateral fallopian tubes: No significant abnormalities D. OMENTUM, EXCISION: - Metastatic high grade serous carcinoma, 0.4 cm - One lymph node, negative for metastatic carcinoma E. RIGHT OVARY, OOPHORECTOMY: - Metastatic high grade serous carcinoma, microscopic foci on serosa surface F. LEFT POSTERIOR CUL-DE-SAC NODULE, EXCISION: - Metastatic high grade serous carcinoma G. RIGHT POSTERIOR CUL-DE-SAC NODULE, EXCISION: - Metastatic high grade serous carcinoma H. LEFT GUTTER PERITONEUM, BIOPSY: - Fibroadipose tissue with reactive mesothelial hyperplasia and adhesions Interpretation: No loss of nuclear expression of mismatch repair proteins. There is low probability of Lynch syndrome. HER2 negative.

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Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Welcome RD. So sorry you

    Welcome RD. So sorry you needed to be here but glad you found us! I can't directly answer your question about this being the right decision. I will tell you what I did and why.

    Serous is a very high risk cancer. Very aggressive. I was Stage 1 Serous (Grade 3). I had chemo and 5 brachy therapy (radiation) treatments. My gyn/oncologist said 'we take serous, seriously!'

    I made this decision because I wanted the best chance available to live. I am 5+ years out from treatment and am grateful to be NED (no evidence of disease). Your best chance of a cure happens in the beginning of this disease treatment.  I hope you reconsider your decision but it truly is up to you to determine what is best for you.

    I'm sure others will come along with other opinions / suggestions.

    Love and Hugs

    Cindi

  • 8675309
    8675309 Member Posts: 7 Member
    USC

    Forgot to add this part. 

    She has stage IV uterine serous carcinoma, HER2 negative. I recommend adjuvant therapy and discussed 6 cycles of carboplatin and paclitaxel. We discussed goals of care; she asked for alternatives including surveillance and carboplatin alone, which we addressed. I strongly recommended chemotherapy. 

  • Afoste3
    Afoste3 Member Posts: 39 Member
    hi RD

    My mom also has stage IV (part of her cancer is also serous carcinoma).  The 6 cycle chemo of taxol and carboplatin was recommended to her too.  The difference from Cindi's situation that she described in her response is that stage IV cancer is not (typically) considered curable, while stage I has a much better chance of that happening if treated agressively.  The way it was described to us is the chemo is the best option to put my mom into remission.

    For my mom, the remission lasted about 7 months before the cancer returned.  She is now trying a different treatment.  But don't take this as saying you shouldn't do the chemo--she handled it well with little side effects and felt pretty good throughout the process.  While we have no way of knowing what would have happened if she didn't get chemo, the assumption was that the cancer would have returned more quickly. Many people on this board have also had longer stretches with no cancer, even at stage III and IV.

    Is there a specific reason you are reluctant to move forward with chemo?  Many ladies here will share their stories with you and I think it is one of those situations where the fear of the unknown is worse than the actual event.  It could just be that you don't want treatment and are comfortable letting the cancer take its course however that turns out to be (?)  I can see valid points on both sides when the cancer is stage IV.

    Please let us know if you have any questions.  Anne-Marie

  • 8675309
    8675309 Member Posts: 7 Member
    Treatment.

     

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    edited November 2021 #6
    I respect the desire to

    I respect the desire to remain anonymous and so I will I use what is currently showing.

    Dear 8675309, my heart breaks for you. As difficullt as it is, the option for treatment is ultimately the decision of the patient.  The doctors may provide guidance on choosing just one over both, but you have also shared some very detailed and unfavorable results.  I had a mother who chose not to have any treatment, and we all respected that, but it was still difficult.

    Hugs dear child. Clearly your mother raised a loving child and that tells us quite a lot of who she is.  My prayers are with you and your family as you navigate this journey.

    NoTime 

  • Maxster
    Maxster Member Posts: 102 Member

    I am so sorry to hear of your the decision to reject chemo. I was stage 3C1 serous and had 6 rounds of chemo (Carboplatin and Taxol) and 25 rounds of radiation. My journey started in September of 2019. I am still NED. I believe this would not have happened had I refused chemo. This cancer likes to travel and chemo can kill cancer cells that have escaped the uterus. But I also believe the patient needs to determine their course of treatment and can reject recommendations. I am not sure why the person is turning down chemo. I was nearly 71 when diagnosed. I got through the chemo and radiation and feel pretty good right now. Perhaps if she hears some good news about treatment it would help.

  • 8675309
    8675309 Member Posts: 7 Member

    She has made up her mind. she had breast cancer 10 years ago. she has Poly cystic liver disease. she is 105 lbs and she is certain that chemo would kill her. or at the very least make the last days she has misrable.

    and she has asked that i not mention it again. she said she wants to remain positive. and I am respecting her wishes.

    I would like to know what I as the caregiver should expect going forward. I have no clue wants coming. right now, other than healing from the hysterectomy she feels in good health. I know things will change.

    thank you all. and my heart goes out to every woman suffering with this terrible disease.

    RD

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    edited December 2021 #9

    RD, I would suggest talking to local hospice. I don't know how it is in the state you live - it was a wild education for my family - and there are different companies all of them vying for the money that goes with it. I'm sorry, it is hard to believe, but I saw it. However, the good thing is hospice can get her extra help and provide her comfort later in the journey. This is what you need to verify - for us there would have been no limit on how long you can be in hospice, it just had to be 'renewed' every 90 days or so. If she is Stage IV they may have her as "terminal" which could hit the criteria for entering it, but again, you would want to check and your mom would have to sign the papers.

    I did have one of the hospice nurses tell me that it would be a good time to pull out pictures and go through them with her to remember events. I always allowed my mother to continue to make decisions - what did she want to eat, do, whatever. I drove a lot between the city I live in and where we grew up, I did it for my dad as well, and I would do it again if I had to. It clearly sounds like your mother has a mind of her own, and I can totally relate to that! LOL.

    Being a caregiver is hard, but it comes out of love. Hugs and prayers for you and your family.

  • 8675309
    8675309 Member Posts: 7 Member

    She is my girlfriend. Not my mother.

    not that that’s important. I just wanted to clarify. i asked her to call her doctor and ask to schedule an appointment with palliative care, or hospice. Or to find out what her next step should be. But, she seems to be resistant to my suggestions. And I don’t want to pressure her. She really is an amazing woman. She has a kind and sweet personality

    but as strong as she is. At the same time she is so fragile, and vulnerable. And I love her so much. But I cant talk about the reality of this. She gets mad at me. Given her diagnosis I’m concerned about what can happen at any moment? I don’t know what to expect

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member

    RD - I apologize - I am so sorry. I never should have made that assumption - that was so wrong of me! I can only hope my words could express my true reaction to how sorry I am and how my heart sunk. To me - that is important! I can't imagine and my heart is breaking for you!!!

    Since you say she is resistant - and that is completely understandable! I think you can just be ready when she says "ok - now I want to talk to someone". I found be a caregiver is a journey as well, it is different, but it is also difficult.

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    Hey, 8675309 -

    What a hard situation. I think that sometimes partners just want to make their own decisions, and it's so hard to step back and let them, especially when you love your gf and want her around, but also there is that dread of knowing that whatever happens, it's probably not going to be easy or good.

    I saw my parents through hospice, and I know quite a lot about it, as NoTime also does. When Mom went on hospice, she was in the hospital, and had previously been cared for very closely at home for a long time. She needed help with everything, so it was a lot, but keeping our people at home for as long as we can is better for them, I think. With Dad, we had a hospice program come out and interview him and me (I lived about 5 miles away, and was running a program in the home before we brought hospice in). Here's what I learned:

    Depending on your state, I think (I am in Oregon), you will get medications free and delivered, and you will have access to nursing staff, a counselor / social worker, and devices for the home, such as a hospital bed that will be typically in the living room, or in the space you choose. You can ask for "extras" that might help, such as Hoyer lift if you need one later, bed linens, certain tips of washing items and products, etc. The hospice program I used with Dad gave us an "in case of emergency, medications are here" box, which included some morphine for extreme situation of pain. 867 - If the Hospice Team is worth their salt, they will answer your many questions very well.

    As NoTime mentioned, there are many different hospice programs, and it's best if you do some research and find out which program will do the best job for your girlfriend. She does sound like a smart woman. By the way, a close friend of mine just had a pretty serious diagnosis and I found that as soon as I backed off completely, she actually began setting up her appointments and dealing with it--rather than just using language and seemingly resisting beginning the process---which is utterly exhausting, as most of us know. Any, if your gf has made her decision, you will experience "come what may" right along with her. It will be normal to experience some anticipatory grief, and fear if you've never been with a person on their journey. We will be right here if you need us. Please know that.

    Love

    Deb 2

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member

    ..."to be a caregiver is a journey as well" --it sure is.

  • FourBee
    FourBee Member Posts: 52 Member

    Dear 8675309/RD,

    Thanks for sharing and reaching out.

    There have been many times over the years that I rue having had chemo. It can mess with your brain and body permanently and the steroids are prone to making your blood sugar wonky. That said, USC is very aggressive and anything to try and stop more spread is why people do radiation and chemo. This site lays it out well: https://ijgc.bmj.com/content/31/8/1165 It looks like a number of women that had treatment for breast cancer can end up with USC.

    Respect her decision. You should be scared but loving. She is dying. We all are, but her death is clearly on the horizon.

    I totally understand her wanting to feel good and not focusing on treatments that will make her feel bad and not extend her life without additional suffering.

    As to you, she should enroll in non chemo palliative care (may already be past that) and later in hospice for pain management and physical assistance. Treat yourself well, try and get good sleep. Make memories with her now. Do things together as soon as she is able. Take pictures.

    She will grow tired and possibly have a lot of pain. She may or may not grow thinner as she is already lean but cancer does cause cachexia. So she may grow very thin and weak. Toward the end she will not be able to eat or drink. If she does not drink, her death will hasten but she won't be in a lot of pain. She will sleep and nap more and draw inward and lose interest in life. Dying is a process. Her liver may fail, etc. as the disease progresses.

    For now, enjoy the holidays and make merry and ring in the new year. Make the most of LIVING as the DYING will take care of itself.

    Stay close. We are here for you, and her.

    FourBee

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member

    FourBee,

    I finally got around to reading that report from the link you provided. It was very informative and I would encourage those who want more information about serous uterine cancer to read it. I like that it summarized many things like the different outcomes of the many clinical trials for chemo, radiation, addressed p53 mutation and Her2. It is a bit wonky but easy to digest. Thanks!

    Denise

  • vlloyd
    vlloyd Member Posts: 6 Member

    I've been diagnosed with Uterine serous carcinoma. Reading all 2021 comments the above, and it being October 2023, I was wondering how is everyone doing? Please say you're all well.


  • trapugsmile
    trapugsmile Member Posts: 2 Member

    Vlloyd, I also have the same. Was diagnosed a year ago…1a stage grade 3 because of serous. My doc suggested chemo/radiation and I declined. I’m trusting the Lord Jesus Christ and leaving my life. I feel exactly physically as I did before I was diagnosed. I went to Belize 2months after my hysterectomy and then in June I was just in Rwanda. I have more trips planned for early 2024. Every 3 months I get a pelvic exam and my doc had already told me signs to watch out for the return of cancer…vaginal cuff, lung, stomach/colon.

  • vlloyd
    vlloyd Member Posts: 6 Member

    Hi, thank you for commenting and sharing.

    That's wonderful that you trust in Christ! I love that you ate seeing the world. Life is precious.

    My faith is also in Christ and his father and know they only know what they have in store for me. But, unlike you, I do not feel well and believe I will be having chemo befor surgery. I'm like waiting so anxiously to getting the CT and yet so worried about what they will discover.

    I had a CT a month ago for the Kidney stone and lage lynodes where discovered in my abdomin which adds to my worries.

    I pray that God keeps you cancer free.

    Thank you again.

    Valerie

  • trapugsmile
    trapugsmile Member Posts: 2 Member

    Take one day at a time, rely on your Christian faith and write down a list of your happy places and the things you like to do. Do those things and go those places as often as you can. These have kept me focused, positive and content which we know helps us with healing.

  • vlloyd
    vlloyd Member Posts: 6 Member

    I needed that, thank you!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    edited October 2023 #21

    Hello, I was diagnosed with Uterine Papillary Serous Carcinoma (UPSC) in 2012. I had a complete hysterectomy and then chemo and radiation.

    After years of volunteering at Ronald McDonald house and hearing the parents of the children going through treatment say how much they believed in their faith, it took me having cancer to understand that.

    For me, I have faith that the doctors have been given their knowledge to help heal others. I am eternally grateful for their knowledge and how treatment continues to change.

    Ultimately, everyone has to decide what is right for them.