Diagnosed today. Questions.

Primavera · March 2019

CheeseQueen57 said:
One Day at a Ti
You’re where I was in 2016. Click on my picture to see how it all worked out. I’m still here and in fairly good health. I’ll be thinking about you and prepare for your journey. But try to take one day at a time. And go to the best cancer center you can. We’ll all be with you on your journey.

Thank you so much. I've read

Thank you so much. I've read your whole story. You've been through a lot. I'm glad to see you're in fairly good healthy. It gives me some hope.

Primavera · March 2019

MAbound said:
It depends
Like Eldri said, recovery from robotic surgery is pretty easy, but even with not having a big external incision, the interior of your body is going to need 6-8 weeks to completely heal, so expect to have lifting restrictions. Don't push that because you will be at risk for pelvic organ prolapse if you overdo it. Your uterus helps with keeping things in their place and with it gone things can move to where they can cause you unpleasant problems.

The open surgery recovery is a bit rougher. I went home with a foley catheter and drainage tube coming out of my stomach for four weeks. You won't be going into the city with those at all, believe me.

I started in on chemo the same day I had my post-op appointment at four weeks. The nurses said these surgeons would start chemo right after surgery if they could get away with it.

I was sent directly to the chemo room right after removal of the staples, catheter, and drainage tube which was about 2 feet long inside of me and felt really weird coming out. I had staples from pubis to navel, but no pain with removal. Getting the catheter out was such a relief, but incontinence can happen, especially if you get up too late that first night it's out. I wish I had known to have had an incontinence pad on that night while sleeping because I slipped and fell in my hurry while half asleep to get to the toilet in time. They are handy to have if the chemo irritates your bladder too much, too, but that's were drinking tons of water to flush out the chemo really helps.

I know it sounds awful, but really, the worst thing was when I got Ileus. Being prepared and motivated should help you to avoid that and you'l be fine. You sound young and that puts you in a lot better position for a quicker recovery than those of us past menopause.

My daughter paniced in the OR because it was her first surgery and they were removing part of her tongue as well as dissecting her neck for sentinal lymph nodes. Jumped right off the table. Be sure to alert your surgeon and especially the anesthesiologist that this is your first experience with surgery so that they can sedate you during pre-op if you need it. The unknown is always so much scarier than the reality, especially when you'll be in a holding area that your family can't follow you to for awhile. She was so much more relaxed when she had her ovary removed because she had a better idea of what the whole thing was going to be like. You don't need to fear it, but sometimes you can't help it.

I'm hoping others chime in with their advice because the whole thing is not always the same for everyone and I feel like I'm monopolizing with giving you advice based on just my experience. You have the same type and grade of cancer as me, so I'm hoping my perspective and outcome so far will be helpful for getting you through this, but I'm no more expert at this than anyone else is and don't want to give you the false impression that everything will be exactly the same for you as it has been for me.

I was terrified of the

I was terrified of the anesthesia effects when I got the D&C done at the hospital. I kept on asking nurse what's the percentage of people who don't wake up, are they going to put a gagging tube in my mouth to breathe. I had heard that they "numb your throat first and then insert the tube". But none of that happened. I didn't have to count backwards or anything. I went into that operating room with 5 people and then the anesthesiologist must have gotten behind me and put the anesthesia through because when I woke up, I was in another room with a nurse by my side.

Hope that counts as "surgery" even though there were no incisions.

Don't worry about monopolizing. I listen to everything, but know that things are not the same for everyone. I still have to talk to a sister-in-law who had a hysterectomy two years ago and ask what she had. I'm pretty sure she didn't have chemo, though. I still don't know what she had or if it was just pre-cancerous cells.

Thank you so much for your advice.

Primavera · March 2019

zsazsa1 said:
Hello, Primavera. You have
Hello, Primavera. You have come to the right place. First of all, you want to find a gynecologic oncologic surgeon who does a LOT of these surgeries. Keep your appointment with the one that your gynecologist has referred you to, but also find out where the center that does the most cancer treatment is in your area, and the surgeon who does the most gyn/onc hysterectomies, and make an appointment with that one, too, unless they're one and the same. I live in a relatively small city, and still I had at least 4 local options, plus a nearby research university, without having to even go to Boston or NYC. Ask the surgeon whether, in light of the recent studies, he/she recommends an open vs a laparascopic approach.

I too had staging CT scans ordered at my request by my GYN - and afterwards I kind of wished that I had had PET/CT instead. Ask about this. PET/CT also looks for areas with increased metabolic activity - which could mean cancer. It's more radiation, and more expensive. But it is the most thorough. My oncologists and surgeon uniformly tell me that CT is good enough. Others on this board have reported the PET component picking up areas that the CT did not. But it may also pick up areas that have increased activity for other non-cancerous reasons. There is no definitive answer. But if you go see a medical gynecologic oncologist right away, before the CT is done, he/she will advise you on which study they feel would be the best.

Don't worry about chemo and/or radiation now. Focus on getting in with a medical oncologist to advise you on which test should be done for screening for metastases (CT vs PET/CT), and on finding the right surgeon for the hysterectomy.

There is still widespread influenza in most of the US. If you didn't have a flu shot yet, ask about getting a quadrivalent (4 strains) flu shot right away. If you never had chicken pox, measles, or mumps, get tested right away for antibodies, and if you aren't immune, ask about getting a chicken pox vaccine right away, or a shingles vaccine (it's the same virus, just a much stronger dose), and possibly an MMR. You want to be sure you are immune to chicken pox, measles, and mumps before chemo. Most women get screened for this when we have a first pregnancy - but I think you never would have been screened. There's always chicken pox circulating at low levels in the US, because some children are unimmunized, and because shingles lesions also shed chicken pox virus. Unfortunately, we are also seeing measles in the US now, due to people declining the MMR for their kids. I'm your age, and I had measles when I was a year old, but a lot of people our age didn't have measles, and may have only had one dose of the vaccine - you are supposed to get two. If you're not immune (they can check it very easily on a blood test), it's possible that your oncologist would recommend that you get the appropriate vaccine right now - your immune system will be done responding before you start chemo, which best case scenario would be about a month from now. Your GYN can order the antibody screen for chicken pox, measles, mumps, and rubella tomorrow, you can have the results back within a couple of days, and you could get the immunizations on Monday. The issue is that you want to be immune to these infectious diseases before you start chemo, and it takes a month to respond fully.

Forgive me, it's a lot of information to digest. But it is important to know. These were all the things that I knew, or wished later on that I had known, at the time of diagnosis. Decisions about chemo and radiation come later on.

Know that the women here are with you. Some of us are in treatment, some are long term survivors. I find the support and advice of the women on this website to be invaluable.

My CT scans will be done

My CT scans will be done tomorrow night. Then I go see the doctor Tuesday morning. That was the order in which my gynecologist wanted it to happen. They even had to get approval from the insurance company for the CT scans and they said they don't normally do PET unless needed.

My mother told me I had chicken pox, but I'm not sure she remembers about the others. I've got a tetanus shot, flu shot and hepatitis B shots this year.

CheeseQueen57 · March 2019

Open surger

Things can go really well, even with open surgery. About 4 weeks after my open hysterectomy I was touring Tuscony. A little slower but i was still in Italy.

Kaleena · March 2019

A lot to take in

Everyone here has some great advice. I was originally diagnosed with Grade 2, Stage 3A but they treated it as Ovarian Cancer as they couldn't determine where it originated from. I had it in my left ovary, cervix and uterus. I was 45 at the time. Just to let you know I will be 59 this year, So this is doable! Hang in there and if you have any questions or concerns or just want to vent, this is the place.

My best to you,

Kathy

Forherself · March 2019

Primavera said:
Yes, great advice.
Are you talking about the pathology report from the D&C where I had the type 3? I have to say that number scares me. I was so hoping for a 1 or a 2.

It said on the report that it had been reviewed by another doctor and that they agreed on the findings.

Yes I had that feeling

YOur diagbosis after the staging surgery could be different. Gynecological Pathologists are more used to looking at these slides than a "community" pathologist as my gynecological oncologist said.

MAbound · March 2019

Practical advice for first step

1. Take someone or a tape recorder with you to your appointments. There's a lot to take in when you are in a bit of a state of shock with this diagnosis and it helps to have a second set of ears.

2. Write down your questions as they occur to you and take them to your appointments. A good doctor is going to schedule more time with you in the beginning expecting them from you. None of us started out knowing anything in the beginning.

3. Don't be afraid of an open abdomen procedure if that's the route your surgeon recommends. Easier isn't always the best option down the road. There is some concern now that robot procedures for cancer puts one at higher risk for recurrence and I'm resting easier now about what I went through with the open surgery.

4. Ask your surgeon about who's going to help him with the surgery. They never do it alone and who helps him/her can be important. Mine used a urosurgeon to protect my bladder during the procedure and I've been real glad of that after reading here about some of the issues others have had to deal with post-op.

5. The vaccination advice is good, but bear in mind that doing it before surgery will likely delay it. I got my surgery done within 2 weeks of diagnosis because my surgeon had a cancellation because of someone getting a tetanus shot. In any case, be a germaphobe this year if you aren't already.

6. Learn what you can about genetic and genomic testing and what your insurance will cover or if you can afford to self pay for it. It's not an issue before surgery, but will be after, probably during chemo. I wasn't prepared for it, so didn't ask the right questions when they would have been helpful.

7. Decide how you are going to want to handle icing your hands and feet during chemo to prevent neruopathy. You want what you need on hand for that first infusion and there's a lot of ways you can do it that are discussed in threads on this forum. Developing neuropathy from chemo (it's a permanent side effect) is no joke, so you want to do anything you can to prevent it. You can use it to prevent hair loss, too, but you really need to focus on protecting your hands and feet the most for quality of life after treatment.

8. If you have the open surgery, arrange for someone to be with you most of the time while you are in the hospital. Staff are scarce and busy and it really helps to have someone there to help you with the little stuff and to get you up and walking to wake up your intestines after they've been paralysed for the surgery. Just as drinking tons during chemo is critical, walking a lot right after surgery will save you a lot of recovery time and pain and get you home quicker. It's not easy to do when your connected to an IV, have a foley catheter in, and are feeling tired from any pain meds, so having a visitor who helps this way is very important.

11. Give yourself permission to focus on you this year. Yes, others need you, but for you to be there for them, they are going to have to take care of you for a while. There is light at the end of the tunnel, but it's a long tunnel.

Diagnosed today. Questions.

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