Anxious

2

Comments

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Hi Forherself,

    I also looked up the three markers and it appears all three together are tested for endometrial cancer but it was hard to find anything that explained what’s going on if they’re all within normal limits. I guess it’s just a waiting game at this point but I feel like my whole life is on hold and may be for a long time. It’s very hard and I feel so alone as I don’t have a close support group. You’re very lucky you have a doctor husband that’s supportive and congratulations on your 4 year anniversary!

  • MoeKay
    MoeKay Member Posts: 495 Member

    Hi Connie, I don't know how often your gyn-onc does surgery, but are you on her cancellation list in case someone scheduled to have surgery this week is unable to do so due to Covid or some other unforeseen issue? It may be too late for this Tuesday if she only does surgery once a week, but if she also operates again later in the week, perhaps you could get in a bit sooner. Just a thought.

    I know I had less than a week's wait from the time I first saw my gyn-onc to the time I had surgery, and I had an out-of-state second gyn-onc opinion inbetween, which did keep my mind occupied for part of the waiting period. Even so, it felt like a really long wait until my surgery date arrived, so I have a good idea of the stress you're going through.

    Don't hesitate to check in and ask any questions you have. Hopefully that will not only give you some answers, but will also help you pass the time until surgery!

    All the best,

    MoeKay

  • FourBee
    FourBee Member Posts: 52 Member

    How did surgery go? How are you feeling?

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Hi FourBee,

    You must be an angel! Yesterday was a very bad day. I got on the portal from my hospital and read the pathologist report and was devastated. Dx was stage 1b but type of cancer was Carcinosarcoma. I spent the whole day looking it up and everything said prognosis is poor. I don’t have my follow up with my doctor for a week but at least it won’t be a surprise when she goes over it. The large mass over the ovary area was benign which is good and the 2 lymph nodes tested were negative. Also said that the margins were all clear. The surgery went well and no longer taking any pain meds.

    I read your profile and you are such an inspiration. 10 years dealing with all of this, how do you do it?

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Still not used to this site so not sure if I replied to you so see my answer above.

  • feb11gal
    feb11gal Member Posts: 16 Member

    Connie1950

    On the positive side, 1b is a very low stage and it was discovered early, not in your lymph nodes, the ovary mass is benign, sarcoma isn't as difficult to treat as other cancer types and there are more options and you are off your pain medication. Lots to be thankful for.

    Blessings and continued good luck

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Hi feb11gal. You are so right. I do have much to be thankful for. What do you mean about sarcoma isn’t as difficult to treat?

  • feb11gal
    feb11gal Member Posts: 16 Member

    I have high grade serous and when I was diagnosed, I was under the impression that if my cancer has been a Sarcoma that there would be more options to treat me. Find out if your cancer is fast growing or slow growing. If it is slow growing that will help also. You also might qualify for immunotherapy, as I do not with my particular genetic mutations.

    Have you had genetic testing done on the biopsy they just took during surgery. You might want to look into that because knowing your mutations might help with treatment also.

    Stage 1b is very early, that is a blessing also. Depending on where the tumor is and how many you have and how large it is they might be able to do surgery and remove it and then treatment.

    Stay as positive as you can and learn as much about what kind of cancer you have so you can choose to do research if you want to and know what the doctors are talking about during your meetings with them. Be your own advocate.

    Blessings to you. Feb11gal

  • Forherself
    Forherself Member Posts: 1,018 Member

    Hi Connie, I hope. you are having better days. Uterine carcinosarcoma is also called Malignant Mixed Mullerian tumor. This is the older name. I believe this is the type of cell CMB has and she had a higher stage than you and is surviving 5 years I believe. There is also a group dedicated to this type of uterine cancer. You could message her and ask her about it. It is an uncommon type of cell, but there are lots of women with it, and their group is very active.

  • FourBee
    FourBee Member Posts: 52 Member

    Hi Connie,

    You are going to need support through this process of healing and any follow-up treatment. Is your gyn onc at a teaching hospital?

    Do you have family and friends to lean on? Are you journaling in Caring Bridge to keep people informed?

    There was a ton of good news in your surgery and pathology report: clear margins; no lymph involvement; early stage; etc. Your body knows how to heal.

    See if you can get acupuncture. Eat lots of leafy greens (can be cooked in soup). Stay hydrated. Laugh! Before you know it your life will be joyous, again.

    One foot in front of the other.

    We are here for you.

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Hi FourBee,

    I don’t have a lot of support so I’m sure getting through treatment is going to be a challenge. It’s always been hard for me to ask for help probably because I was usually the one that would care for others .

    My gyn/onc is at a local hospital and the closest teaching hospital is 2 hours away. But I am willing to travel. I have joined a MMMT group on Facebook and the women on there are also very informed.

    Thank you so much for your encouragement and advice. It’s so good to hear it from someone who has been through it.

    Breathing!!!

  • MoeKay
    MoeKay Member Posts: 495 Member
    edited February 2023 #33

    Hi Connie,

    My pathology report indicated that MMMT was a differential diagnosis, but the pathologist ended up ruling it out based on several enumerated findings in his report. For this reason and due to several other pathological findings contained in the report, I requested a second pathology opinion at another institution. You might want to give some thought to having your pathology slides reviewed by the teaching hospital you mentioned above, or by a major cancer center. Here's some information on second pathology reviews: https://www.cancerabcs.org/pathology-2nd-opinions

    Since MMMT/carcinosarcoma is very rare, second opinions on both pathology and treatment definitely can't hurt. I got second opinions on both and have never regretted doing so. My insurance paid for the second pathology opinion, but as the article above mentions, you would want to check with your insurer first.

    Best wishes for continued healing and good health!

  • Connie1950
    Connie1950 Member Posts: 23 Member

    MoeKay,

    Wow, I had no idea that happens so frequently! Because it is such a rare cancer, I am certainly going to look into this. Did someone help you coordinate this? Did you go to your gyn/onc to start the process . Thank you for this information.

    Connie

  • MoeKay
    MoeKay Member Posts: 495 Member

    Connie, in May it will be 24 years since my surgery, so I can't recall the specific details. I do remember that I spoke directly to the pathologist a few times asking him questions about his report. He spent a lot of time on the phone with me explaining everything. So I'm not sure if I had him initiate the process for the second pathology review or if I had my gyn-onc start the ball rolling. However, I know that the hospital where I had my surgery forwarded all the slides directly to the second hospital's pathology department. So I would check with your gyn-onc or pathologist. Getting a second pathology review is a common practice, so they would know how to go about doing it. I believe you said you will be seeing your gyn-onc this week, so she may be the easiest one to ask initially.

    Good luck!

  • FourBee
    FourBee Member Posts: 52 Member

    Dear Connie1950,

    I realize that the teaching hospital is far away. I had to drive 2.5 hours (without hitting traffic and there was always traffic) one-way to go to UCSF (University of California San Francisco), a teaching hospital. I lived in a small farming town and the town hospital did blood draws but it was their lousy gynecologist that got me into the pickle. The nearest city had a hospital that I was none to pleased with. I had surgery elsewhere but after getting two second opinions enrolled in a clinical trial at UCSF.

    You need someone else to review your pathology report and recommended treatment plan. If they agree with everything, great! Yours is a rare cancer that needs experienced hands helping you through to full recovery.

    Best wishes,

    Fourbee

  • feb11gal
    feb11gal Member Posts: 16 Member

    Connie1950

    I agree with Fourbee and others here.

    My primary doctor at hospital A discovered my cancer in a checkup so referred me to a GYN/ONC at Hospital A for my initial MRI/PET Scan. Through that process I was assigned to a doctor. During my first meeting to go over the results I realized how serious my situation was and knew that Hospital A (although a very good hospital) was not the BEST for cancer where I lived. So, upon returning home I immediately started looking for the best doctor for the type of cancer I had in the area or even the west coast, if necessary.

    When I located that doctor, I discovered she wasn't taking any new patients, but she assigned me to one of her reports (she was the head of the department) so I asked Hospital B to request my exam reports from Hospital A and completed the necessary paperwork to do that. Within a couple of days, I was meeting with my new doctor at Hospital B and starting treatment.

    After 6 rounds of treatment, which was showing huge positive improvement in my results, the peer review team of the hospital B wanted to put me on maintenance therapy instead of continuing with IV chemo. I had developed a senitivity to the chemo drug so the administration of chemo was taking 12 hours every 4 weeks, but it was working and I was strong enough to continue. Therefore, I didn't want to go on maintenance.

    The doctor I was assigned to was going on a 4-week sabbatical so agreed with the peer medical review team and was planning on moving me over to maintenance. I still had cancer in several places, so I knew that decision was a death sentence.

    Thankfully so did my doctor's boss (The head of the department who wasn't taking any new patients 7 months earlier). She had the belief that continued treatment would be beneficial so agreed to take me over as her patient from there on out. I cried out of relief upon hearing this news as I knew that decision saved my life.

    1 and 1/2 years later I still have 3 very small tumors but am strong and now willing to go on a targeted maintenance therapy which is aligned with my gene mutations to target only the 3 tumors and not my entire system anymore. The head of the department doctors saved my life, (twice) over the last 1 1/2 years.

    Keep trying to advocate for your life. Keep fighting for your rights. You have the right to a second opinion or even to change doctors if you don't feel comfortable with the course of action proposed.

    Hospital A and the doctors there are wonderful, hardworking and intelligent. They just didn't specialize in the cancer I had so they had less experience. Nothing is wrong with advocating for the best care you can find. It is within your rights and the results of not finding the best care could be detrimental.  

    We wish you all the best.

    Feb11gal

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Fourbee

    Another member said the same thing about another pathologist reviewing. I don’t expect anything wrong with the report, but you never know. This is too serious to not get a second opinion I meet with the gyn/onc next week for my first post op appointment and I’m going to talk to her about this. I don’t mind driving to the nearest teaching hospital. I know there is one in Columbus OH but it’s possible there is one in Cleveland or Pittsburg.

    I’ve only met with the gyn/onc once but I’m not sure how I feel about her yet. She seemed a little distant and way too busy for this type of cancer. I may be wrong. However I thought it was strange that I never received a call from her office since I left the hospital after my surgery asking how I was doing. I want a doctor that is fully involved and will answer all my questions.

    Thank you for your help. I would be totally in the dark if it wasn’t for the help I’ve received on this site

    Have a great evening,

    Connie

  • feb11gal
    feb11gal Member Posts: 16 Member

    Trust your instincts. We have very strong intuition, us women.

    I never felt "connected" to my first doctor at hospital B either but at least the doctor I really wanted was her boss and I felt that her boss was reviewing my case. And in the end I was right thankfully and I was very blessed when I finally was able to work with the head doctor. She and I connect like we are one person and I trust her, obviously, with my life. I pray that you find someone who you feel comfortable with.

    We all realize, unfortunately, how difficult all of this is. The day we received "the news" our lives changed forever.

    That is why we are all trying to support you as much as possible.

  • Connie1950
    Connie1950 Member Posts: 23 Member

    Feb11gal,

    That’s great that you ended up the doctor you have. What a difference it made. But it only happened that way because you kept pushing. The hospital where I had the surgery is in a fairly small town. During my post op stay, all the doctors and nurses were very young. I’m not sure if all the more experienced ones quit during Covid but almost every nurse that I dealt with had a trainee or student following her around. I really didn’t have much confidence in them. Like everybody says, follow your gut feelings about these things.

    Thanks and best wishes,

    Connie