Blessed, but Threatened

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  • HMcd60
    HMcd60 Member Posts: 12 Member
    #62
    https://csn.cancer.org/discussion/324642/blessed-but-threatened
    https://csn.cancer.org/discussion/324642/blessed-but-threatened

    Hi Nettiej526 - thank you for sharing your journey. It is scary that so many have the same diagnosis as myself and we seem to be around the same age (just turned 62) and had a few episodes of spotting as an indication that not all was okay. My oncologist has recommended no further treatment after surgery, which is an option but so many researchers recommend some form of chemo / brachytherapy that I am unsure how to feel about getting nothing done and a wait and see approach.

    My journey: Early November 2021 I noticed a few spots of blood on toilet tissue. Had an appointment with my GP the following fortnight, so mentioned it. Fortunately, she was insistent that I have a PAP test there and then, although had one less than two years earlier which was negative. Also got some imaging done. Imaging nothing outstanding, but the PAP test showed adenocarcinoma - endometrial in origin. 7th December my GP rang me and said I had cancer of the uterus. 14th December specialist appointment, 16th had a D&C etc for biopsy. Results relayed to me on 21st December and had a Radical Hysterectomy the next day. Diagnosis: Uterine Serous Papillary Carcinoma stage 1A. The immunohistochemistry show a p53 expression status as mutant and Estrogen receptor status as positive.

    My post operative has been very painful - discharged next day from hospital but a serious bacterial infection resulted me back in hospital the day after. Stayed in hospital over christmas and out after three days intravenous antibiotics. I have not been able to move around much for 4 weeks. Had much bleeding and discharge, which seemed to be within normal limits, but went for 5 week checkup with specialist and she found an infection - Streptococcus intermedius. and said should have gone back earlier. On Augmentin Forte for 10 days (now day 7), and pain has almost gone which is great, almost feeling able to do things again.

    Hoping for some ideas from women with similar diagnosis - should I request chemo/radiography treatment at this stage? What tests should my specialist do at the 3 monthly checkups? I am also not sure how to feel about the diagnosis - do i have cancer or did i have cancer? how should i feel - i think i am abit numb and am dealing with it in a third-party factual way rather than personal something that is happening to me- that is a direct threat to the length of my life. Should I keep on the "third-person" thoughts or try and explore what it means to me? I have two children in their 20's one lives with me .

  • nettiej526
    nettiej526 Member Posts: 28 Member
    #63
    https://csn.cancer.org/discussion/comment/1693010#Comment_1693010

    Sounds like it has been a very rough road for you! I am truly sorry that you have been through all of this. I had the robotic total hysterectomy and have had an easier road so far. I am two and a half weeks out right now. As far as your questions, I may be able to shed a little light. I am certainly not a doctor. I can only tell you what my particular gyn/oncologist said to me or info about some of the research I have done so far. She told me that the serous cancer can have a quite high risk of recurrence. She was recommending the chemo and brachytherapy to reduce the risk percentage for recurrence. She said that current medicine cannot detect if there are any micro-cells still in your body after surgery. The chemo is to try to eliminate these micro-cells if they do indeed exist. Unfortunately, I guess none of us know if they do or not, including the docs. The research I have done says that in our case, they really don't have enough trials done yet to determine the absolute best single course of treatment for the low stage high grade serous. It is harder to create trials when it is a more rare form of cancer. I guess there was a trial done that indicated better recurrence rates after chemo, so I guess some docs are going with that. I read that they do the brachytherapy because it is not uncommon for recurrences to start out later in the vagina, so the brachytherapy makes sense to me for that reason. This lack of substantial trials for serous seems to be the reason for different treatment plans by different doctors for our similar situations. My personal choice is to go for the chemo and brachytherapy. I want to be aggressive with an aggressive cell and an aggressive recurrence rate. There is info about serous available online. Maybe you should read up on it and then present your questions to your Doctor. I think that you should know enough about it all that you can feel confident with whatever decision you make. Exploring can create anxiety too. You will read some scary stuff too. If you can handle that anxiety, you can learn a lot about your situation. Be sure to see how current the articles are that you are reading. Things change a lot in a short time and success rates improve a lot over time. It is really up to your Dr. to give you the information that can give you the comfort level that you need to make your decision. I hope this helps at all or gives you some direction to research further. I will pray that you have better success now with your recovery! I wish you all the best, as I do all of us!

    Nettie

  • HMcd60
    HMcd60 Member Posts: 12 Member
    #64

    HI Nettie, thank you for your reply - I agree with your assessment. My specialist seems a bit timid / young but apparently a very good surgeon. However, I will raise all concerns with her to give her the opportunity to discuss the relative pros and cons for therapy in light of the high risk nature of the cancer. I guess I was so happy that i didn't have to go through any horrible therapies - I am scared of side effects and pain. But if it went elsewhere the outcome could be a lot worse than these earlier treatments.

    It is very comforting to get others experiences. Thanks again, and all the best.

    Heather

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #65

    Heather,

    I was dx with 1a UPSC July, 2018. So far NED. You can read my story by clicking my name. I was initially treated locally by my gyne, who ended up being incompetent. Due to that, I had a terrible time getting dx and treatment so we went to Mayo for a 2nd opinion and I ended up getting my surgery there. They key here is going where they see a lot of your type of cancer and have treated many thousands of patients with it. The treatment they recommended in 2018 for High Risk serous was surgery, chemo and brachy. I finished treatment in November of 2018. I also have a p53 mutation but I am Her2 negative, Lynch negative, with no BRCA mutations. (you should also request to have those tests done if they have not done so.) My cancer was Type 2, Grade 3 serous. My advice for you, if your surgeon/doctor was not a gynecological oncologist or you have not been seen by one, I would suggest a 2nd opinion by one, at an NCCN cancer center, if possible.

    https://www.nccn.org/home/member-institutions These are the non-profit organizations dedicated to the treatment of cancer.

    (You can also request a virtual 2nd opinion at these NCCN institutions, where they review your pathology, etc.) At Mayo, they reconfirmed that I had serous, grade 3, and after surgery they staged me 1a. There are also written guidelines for you to read about treatment protocols. I know in the 1st weeks after dx all of these terms were still unclear in my mind, which makes it more frustrating to try to understand what is important and what is not. Serous is an aggressive animal so I wanted to have the best chance at survival so I chose the chemo and brachy.

    The link for the NCCN patient guide is: https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=41 This is written in lay language so it is easily understandable.

    I had a baseline CT scan a week before surgery, one after treatment at 3 months post surgery, and one at 6 months. I had pelvic exams and blood work for the 2 years, now I just get a semi-annual pelvic exam. I am extremely fortunate in that I had no complications from surgery, an easy recovery, and I am 3+ years NED with no complications except for a weak pelvic floor.

    If you have any other questions you know where to find us!

    Denise

  • HMcd60
    HMcd60 Member Posts: 12 Member
    #66

    Thank you Denise - very helpful and much appreciated. All the best.

  • Dak82
    Dak82 Member Posts: 109 Member
    #67

    Alicia, I love reading your posts! I would consider your experience with cold capping and icing hands and feet to be that of what we call a SME—subject matter expert. I tried the icing at first chemo and decided I didn’t like the hassle. Luckily my neuropathy has been minimal 10 months later. Whew, I can’t believe it’s been that long.

    Cheers,

    Deb1

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