Newly diagnosed, looking for any kind of info on what happens after I see oncologist

TotallySurprised · June 2023

I got diagnosed in Emergency June 5 and my first appointment with the oncologist is not until June 28, and I have no idea of what to expect from that meeting. I've now had pelvic biopsies with CT guidance (June 12), and that's it--no bone scan or special blood tests, etc. So all I know so far is that I'm obviously stage 4b judging by what the Emerg doctor said: my tumour (s?) is very big, pushing on my intestine, bladder, and diaphragm, reducing my lung capacity to 50%, and it has already metastasized to both lungs. I'm also 72 and already have had MS for nearly 40 years, but I'm still mobile and functioning, etc.

Has anybody else with a big late-stage tumour been told it's inoperable; if so, were they offered chemo to try to buy a bit more time? etc.Or have they been told the doctor will take out as much as possible? I just don't have a clue about what to expect from the first meeting with oncologist at the end of the month: is she likely to order a bone scan and special blood tests, or explain the tumour size and stage and the cells grade? Or is she likely to just tell me there's nothing she can do, or even in a worst-case scenario, is she likely to offer me a range of options, however limited, like maybe special drugs if I can pay for them myself, or what?

I'm spending this 3-week waiting period rocketing back and forth between total despair and maybe a glimmer of hope. I feel like Schrodinger's cat: I feel both alive and dead at the same time, and I don't have a clue if I might have days, weeks, or months left, and what would be involved in trying! I know everybody's journey is different, but can anybody give me any clues as to what kinds of things the doctor might tell me?

Strongwoman · June 2023

@TotallySurprised
Welcome to OV Dialogue. I am sorry that you are joining us because you have been recently diagnosed. As you have stated, you are experiencing a whirlwind of emotions right now and deservedly so. I want you to know that this is 'normal' to go through what you are currently feeling and are not alone. Many of us have been in your exact shoes and had some similar thoughts. It is a LOT to process and the waiting also seems long when all you want is answers.
If you have not already, on the home page you will find the link to "By Your Side" which is for anyone newly diagnosed and is available in both print and digital format. It is a very useful guide as you go along your journey. Second, we have a weekly online chat on Thursdays at 1pm ET and you are welcome to join or follow along in the conversation. Here you will find many of us updating, encouraging or venting. It all depends on what type of week we have had and what we feel we need from the group at the time.
Now back to you and the questions you have. I would say that the timelines you are looking at are quite normal and not at all lengthy (but it will feel like it is). You mentioned that the Emerg MD stated that you were Stage 4B, what was that based on (if you would like to share). What can happen is that either a team or several doctors (radiologist, oncologist, general surgeon are some possibilities) will confer about your testing (whatever has been done thus far and what results are back) and then discuss with you all the myriad of possibilities that will/can go along with it. I would highly suggest taking someone with you to be another ear for you and who can and is able to advocate for you. This person can ask questions, right down answers to questions you ask as well as all the information you will receive that day. Often, we are "in shock" when we find out our diagnosis and many are unable to get past the emotions that go with it. This includes retaining any information at the appointment. Some of the possibilities (to put your mind at ease) are chemo before any surgery followed by more chemo, radiation (sometimes same scenarios, surgery alone followed by chemo. This is not an exhaustive list by any means. What you will find out and is VERY important is what type of cancer you have (High grade, low grade are some possibilities) as this will help in what is available to assist in treating it. Most common type is high grade serous carcinoma (HGSC). Often bloodwork is ordered and with Ovarian Cancer they watch the tumour marker called CA 125 level. Often in HGSC the numbers can be in the thousands and with LGSC (in my case anyways) I was below the 500 mark. Know that these type of readings are 'normal' and don't be alarmed by them. Expect it especially if you are far along as what you stated as it would match the 'staging' you stated.
Questions to ask at your appt are very important. Here are some to consider:
What options do I have available to me and what are their side effects/outcomes?
What happens if I do nothing?
How many rounds of chemo/radiation might I expect?
Can you direct me to any resources that can help me? (This can include peer support, physiotherapy, resource support worker, psychologist etc)
What risks are involved in my choices?
Make sure you and whomever goes with you, understands what it is exactly that you have and what has been put in front of you. If you don't understand, ask to for more explanation so that you understand. That also includes treatments and how they work.
Often drugs are covered under an individual's health care plan. If they are not, there are programs that the Oncologists or Support Workers will apply for on your behalf to have them covered. This all depends on what province you are in and is why I am vague as to anything exact at this time. I am in Ontario and can only speak of what I know in this province.
Most importantly, take care of you from here until your appt. Find things to fill your day that bring you joy and keep your mind occupied. Walk every day even if it is a short distance, several times a day. Journaling can help some people, scream into a pillow if you want to or out loud, cry, laugh and above all else, turn here to OV Dialogue an we will do our best to assist you with your feelings until you get to your appt. We will all be here for you afterwards as well. Share as much or as little as you want to. This is your space too and it is a safe space as well.
I hope some of this has helped and will give you some ease of mind as well. If you have any further questions, reach out. I wanted to make sure you received a response today as I understand where you are at and how scary this all can be. Sitting in the 'unknown' is very difficult and even more difficult to not let our minds wander to very dark places. So, find something funny on TV or to read and laugh a little. It is good for one's soul!!
Take care and look forward to your next post. Please remember you are not alone in your journey!

TotallySurprised · June 2023

Strongwoman, thank you so much for your two very quick and helpfully detailed replies. I did download the booklet you mention, but like much of the "research" I have been doing, I found that I could only take in so much at a time, so I'm only halfway through. And I certainly don't mind sharing the few details I have gleaned so far about my case. The Emerg doctor did not actually say stage 4b, but but he did say that the news was "very bad," that the tumour was very big, filling much of my abdominal space, was "late stage," and had already metastasized to both lungs. When I looked this information up, most sites seemed to say that this was meant "distant" spread and indicated stage 4. So that little bit of informal news he let drop makes things seem pretty unpromising. Maybe surprisingly, however, given this stage, I now remember that the gynecologist I saw urgently the next day said that my CEA blood test was normal (I don't know what that is and have not yet looked it up) and that my C125 marker level was elevated (maybe around 600?) but that she had seen these in the thousands. I'm afraid that at that stage I was not taking in information very efficiently, but I hope to improve.

Over the next few days I will study your detailed replies about what to expect and questions to ask the oncologist carefully to try to be better prepared for that meeting--including the all-important questions of what happens when if nothing can be done, or whether if they even offered me the brutal surgery/chemo option, what might that give me in terms of quality of life and on what proportion of good time/bad time. I know that my MS does complicate things because I've had to work so hard every single day for years to keep some mobility, and surgery/chemo would certainly bring that necessary movement to a halt for a while, I imagine.

Anyway, you've given me lots to think about and I especially appreciate your "normalizing " the terror of the waiting game for more information. And I am lucky that I have a very supportive husband, so when I told him that I wanted to get an electrician in immediately to move all the receptacles in our old house up to reachable levels so that I could easily plug in every Christmas light we possess and light the place up in bright, happy colours, he knew that Christmas is my favourite time of the year, so we're partway through that process, and I'm playing Christmas music every morning when he comes down (about 4 hours after I get up). As for TV, I'm a big detective story fan, so Britbox has been purchased and I'm distracting myself for most evenings with bland "who dunnits?"

And I love your username. I had noticed it earlier when I was poking around on this site a bit in curiosity, and how ever much the effort costs you, as I an, sure it does, your efforts are certainly appreciated by terrified newbies like me. Thank you.

Strongwoman · June 2023

@TotallySurprised Thank you for your kind words. I enjoy assisting others where I can. I am thankful that you found the information I sent useful.
Like you, my fav time of year is Christmas as well. You go girl! Light up that world of yours, sing those songs and find joy in moments that you share with others as well as yourself!

Newly diagnosed, looking for any kind of info on what happens after I see oncologist

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