Travel or no travel?

Flanancy
Flanancy Member Posts: 17 Member

I just had my D and C and hysteroscopy this morning. I have four days to wait for results and I plan to keep busy and not dwell on the possibilities. But I feel knowledge is power so I am prepping myself with info. If I need treatment, ( and I do expect at least a hysterectomy), I am wondering if I should go to the local hospital down the street or make the hour and a half trip to Mayo. I go there once a year for a different consult/testing. Is it doable to travel that much for treatments? Is it worth it to go to a hospital with a greater reputation? Thank you.

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,493 Member

    Flanancy, if your D&C finds cancer, you want to work with a gynecologic oncologist - NOT just a gynecologist. This is very important! Gyn's are great, but gyn oncs receive additional training and that is critical in this surgery. I don't know if your local hospital has a gyn onc, and if they don't, consider making the trip.

    I applaud you for asking. I didn't know up from down and I was fortunate that my gyn automatically referred me to a gyn onc - I had no idea that is what I needed.

  • Flanancy
    Flanancy Member Posts: 17 Member

    thank you. Both hospitals have gyn oncs but one hospital, the farther one, has a much better reputation. I m wondering if anyone traveled an hour for I guess each treatment visit and if it is doable, or too exhausting.

  • MoeKay
    MoeKay Member Posts: 493 Member

    Hi Flanancy, if it turns out that you do need surgery, why not schedule a consultation at both facilities and see which gyn-onc you like best? When I was diagnosed with endometrial cancer 25 years ago, I saw one gyn-onc to whom I was referred by my gynecologist. At that time, there weren't any gyn-oncs very close to home, so it took me the better part of an hour to get there. I also scheduled an appointment for the following day at a major cancer center about two hours away. The gyn-onc at the major cancer center was younger and less experienced. The first gyn-onc was not only very well-respected in the community, but his personality and mine were a much better fit than the one from the major cancer center. I also learned that the nurses who worked at the hospital where he performed surgery sought treatment from the first gyn-onc and had nothing but good things to say about him.

    Even though I had to travel close to an hour for surgery and follow-up appointments, when it turned out that I needed daily radiation for five weeks after my hysterectomy, my gyn-onc assisted me in arranging a radiation treatment plan at a hospital closer to home. After completing treatment, I continued to see my gyn-onc for 15 years until his retirement. As time went on, the visits became less frequent, starting with once every three months the first year, every four months the second year, then every six months until year five, and then annually.

    I hope the next couple of days fly by for you and that the results of your D&C end up being benign!

    MoeKay

  • oldbeauty
    oldbeauty Member Posts: 378 Member

    This is great advice. It is highly unlikely you'd be told you must have surgery RIGHT NOW. Take the time for yourself to find the physician who is the best fit. You may need them for a long haul. I had a bad hysterectomy experience, and then later, after chemo, I had to go through an unpleasant process to be "allowed" to change my gyn/onc from one who was an insufferable boor/bore to the one I now trust with my life. Take the time to choose deliberately, like MoeKay advises. Hopefully, all the advance prep won't be necessary! Best wishes, Oldbeauty

  • Flanancy
    Flanancy Member Posts: 17 Member

    wonderful advice! I will definitely do that! I have gotten an email message that my results are in but I decided to wait an extra day or so and let my gynecologist break whatever news there is. Then if needed, I will make those two appointments. Thank you so much!

  • Flanancy
    Flanancy Member Posts: 17 Member

    Thank you so much for reminding me to take my time and find the good fit if I need to. It’s tempting to just get it all done asap but if I need to, I will take my time. Thank you.

  • Sunrize169
    Sunrize169 Member Posts: 2 Member

    Hello MoeKay. 😊

    Your comment completely caught my eye. I was just diagnosed with metastatic endometrial cancer on July 17th, after being told on JULY 16TH of 2021, that I had a LESS than a 1% chance of it coming back! Nearly THREE years to the day. We were told that I am basically going through treatment to prolong my quality of life!! I am so angry. I am so devastated. I am in such disbelief. This just doesn't feel real. I try so hard not to break down & cry. Because I know those emotions aren't good. But it's just soo hard. I can barely even think straight right now.

    So, the 1st year after my initial diagnoses of Stage 1a Grade 1 endometrial adenocarcinoma, I was not given ANY type of imaging over these past 3 years. Nothing! I was told because of the grade & stage, I didn't need to worry about it coming back. I had vaginal exams every 6 months for 2 years. That was it! Had I gotten a PET scan done at some point between now & then... I might not be dealing with metastatic cancer! I am just so beside myself. I have been watching a lot of videos with Dr. Seyfried in them. He is extremely knowledgeable about cancer due to the 20+ years of work he has done studying it. Many articles of data to prove his studies. He says that by completely eliminating glucose & glutamine from our bodies, & with SMALL doses of chemo, the cancer calls CAN definitely be killed off. So that is what I've been doing. I am so torn on whether I should do the chemo or not because I have T2D, Lupus, & a blood clotting disorder. The treatments will be, Carboplatin, Paclitaxel, & Keytruda.

    Dr. Seyfried talks about how these treatments are killing innocent people & how it is absolutely unnecessary. He says if Dr's would just study the data, they would learn for themselves, that eliminating as much as possible the glucose & glutamine WITH small doses of conventional treatment, are all that is needed to kill offcancer cells.

    I just don't know what to do. My first chemo treatment, out of 6, 3 weeks apart, is supposed to start next Thursday. I am meeting with a colleague of my current medical oncologist on Monday. He is much older & also has a PHD. More schooling. And has been in his line of work probably 20 years longer than this current Dr I've seen. I am prayyyying, he will give me better news than a prognosis of roughly 2 years!? 😭

    Any & all advice & prayers will be so greatly appreciated!

    I pray to be able to say I've survived 25 years just like you! 🫂

  • Sunrize169
    Sunrize169 Member Posts: 2 Member

    My thoughts & prayers go out to you Flanancy! I pray your results come back fine!🙏🏻

  • Kim25
    Kim25 Member Posts: 26 Member

    I went to U of MN however Mayo also looked really good. Get two opinions if possible.

  • Kim25
    Kim25 Member Posts: 26 Member

    Also the biopsy my ob did came back negative and then less than 3 months later I was diagnosed stage 4b cancer. The tissue biopsy in Sept must have been completely dead so didn’t show cancer? So yes please get top of the line oncology care

  • Flanancy
    Flanancy Member Posts: 17 Member

    Thank you. I will. Best of luck to you. I ll be praying for you.

  • Kim25
    Kim25 Member Posts: 26 Member

    praying for you too. If you go to mayo or u of mn post and I’ll look up the dr names of message me if that’s possible.

    It takes a little time to get in so you might want to schedule an appointment now (which will be after you get your results) that way maybe you don’t have to wait as long for opinions?

    Good luck 🍀

  • Flanancy
    Flanancy Member Posts: 17 Member

    You are so sweet. Actually I am in Florida and I am already a patient for something else at Mayo here.

  • Fridays Child
    Fridays Child Member Posts: 281 Member

    Hi, Sunrize,

    Been there, done that. When I was originally diagnosed I had the hysterectomy and radiation. Like you, I was told very little chance of recurrence. They did a CT two years later because of hip pain but nothing showed up. I was followed with exams for 5 years and released from the cancer center.

    6 years after my surgery I went to orthopedics for hip pain. At this time the MRI showed a pelvic mass which invaded my hip joint and also spread to my lungs. So we did Carbo/Taxol and radiation. I finished that chemo six years ago.

    I know what you mean about having a PET scan in the interim, but generally speaking insurance is not going to approve a PET scan unless something has shown up. Mine insisted on a biopsy before they would approve it.

    I hope you will feel better after talking with this other doctor, and that your treatments will be successful!

  • MoeKay
    MoeKay Member Posts: 493 Member

    Hi Sunrize, I'm really very sorry to hear about your recent recurrence. One thing I've learned about cancer is that it doesn't always follow the rules. Sometimes people who are diagnosed with a very early, non-aggressive cancer recur, even though the odds of non-recurrence are strongly in their favor. And sometimes the opposite is true. I've mentioned my childhood friend on this board a few times, but I will give you a brief summary. She was diagnosed in 2017 with stage 4, grade 3, endometrial adenocarcinoma. She went through several treatment regimens, including participation in a clinical trial, between 2017 and 2020, none of which put her into remission. Then in 2020, Keytruda (and Lenvima) were approved for advanced endometrial cancer. Her gyn-onc started my friend on that combination treatment, but her blood pressure skyrocketed, so he discontinued the Lenvima. She remained on Keytruda for three years and has been without any evidence of cancer since 2022. She just had another CT scan last month, and her no evidence of disease status continues. I know Keytruda does not work for everyone, but she apparently has the mutations that made that drug a good fit for her.

    I hope you get encouraging news at your appointment with the new oncologist on Monday. As far as what they're telling you now about your prognosis, I would take it with a grain of salt. They were wrong about your likelihood of recurrence after your initial diagnosis, so why should you believe what they're telling you now about life expectancy? Cancer is exceedingly complicated. I would venture to bet that my childhood friend would not have been told by the experts seven years ago that she would still be around today, completely without evidence of disease!

    Please keep us posted on how things are going. I will keep you in my thoughts and prayers.

    MoeKay

  • Flanancy
    Flanancy Member Posts: 17 Member

    Follow up. Four days after d and c / hysteroscopy. I’ m embarrassed. The results popped up on my phone but I was too chicken to read it. I decided to wait until the gyn office called me, supposedly within four days of the surgery. Let them break the news. Well surprise surprise as usual nobody called. So I will have to call them on Monday. Do they really think a patient reading their own results and making their own interpretations is a good idea? I m kind of angry. And chicken.

  • Kim25
    Kim25 Member Posts: 26 Member

    Do what makes you comfortable.

  • oldbeauty
    oldbeauty Member Posts: 378 Member

    I identify with this. As a longtime warrior, I used to dread facing the CT report prior to my appointments. We call it "scanxiety." I always said that day was like being on death row and waiting for the clemency call to come in from the governor. Then, a lovely woman here, who is no longer with us, Donna Faye, a retired nurse, I believe, wrote some wise counsel here. She said she looks FORWARD to the CT, as it is the main source of useful information for her treatment team. She said she was grateful for the opportunity the scans provided for her doctors to help her. I found that life changing, to wilfully alter your attitude like that. I was able to conquer my scanxiety after so long. Dread is not a healthy or useful emotion. I always knew in my heart that the results don't change just because I don't read the report. My own preference was always to read it and look up terms I did not understand so I'd be in the best position to ask questions at my appointment, but Donna Faye helped me learn not to dread. That's just one person's experience and POV, and it's a personal thing for each of us. I hope you are able to set this aside and enjoy your weekend. Best wishes, Oldbeauty

  • oldbeauty
    oldbeauty Member Posts: 378 Member

    I identify with this. As a longtime warrior, I used to dread facing the CT report prior to my appointments. We call it "scanxiety." I always said that day was like being on death row and waiting for the clemency call to come in from the governor. Then, a lovely woman here, who is no longer with us, Donna Faye, a retired nurse, I believe, wrote some wise counsel here. She said she looks FORWARD to the CT, as it is the main source of useful information for her treatment team. She said she was grateful for the opportunity the scans provided for her doctors to help her. I found that life changing, to wilfully alter your attitude like that. I was able to conquer my scanxiety after so long. Dread is not a healthy or useful emotion. I always knew in my heart that the results don't change just because I don't read the report. My own preference was always to read it and look up terms I did not understand so I'd be in the best position to ask questions at my appointment, but Donna Faye helped me learn not to dread. That's just one person's experience and POV, and it's a personal thing for each of us. I hope you are able to set this aside and enjoy your weekend. Best wishes, Oldbeauty

  • Flanancy
    Flanancy Member Posts: 17 Member

    Thank you. Yes the stress is making me sick and it would be best to change the way I look at the results. I think part of it is dealing with my husband’s attitude if I give him the info. Last year in a similar situation, he started treating me like I was dying. He got depressed. It was annoying and sad and makes me want to keep it quiet. Not too many positive people around me so I am so grateful for you wonderful people. You have no idea how I look forward to your words of wisdom. Thank you. I will bite the bullet this weekend.