Ovarian and uterine cancers

beth2924

I was just diagnosed. Total hysterectomy was done April 23 for endometriosis, pathology came back with stage 3 uterine and stage 1 ovarian diagnosis. I guess you could say that I'm lucky that the ovarian cancer was caught early. I can't get a straight answer from my surgeon about chemo and prognosis. Every cancer website says something different. The chemo plan prescribed addresses both cancers, but no one will tell me how likely it will be successful. I welcome any tips or suggestions for getting the information.

beth2924

https://csn.cancer.org/discussion/comment/1715582#Comment_1715582

Monitor cancer

Thanks. Getting a CT scan soon will have more information then.

NoTimeForCancer

beth, don't worry about the prognosis -you are a statistic of one. I think more importantly I would make sure it is genetically tested for known responding markers for immuneutherapy. You will bost likely get the chemo, and maybe radiation, but please make sure they do the genetic assays.

If your gyn onc isn't answering your questions, don't be afraid to ask for a second opinion. As hard as it is you have to be your own advocate.

beth2924

https://csn.cancer.org/discussion/comment/1715594#Comment_1715594

Thanks NoTimeForCancer,

I know every case is different, and doctors are hesitant to give a prognosis at the very beginning. I did speak with my doctor again and got more information, feeling more comfortable with the treatment plan. Labs for screening tomorrow, then Chemo Education session. I imagine I will know much more by tomorrow night.

Now I just have to come to terms with the diagnosis in the first place. There are times I am going about my day and totally forget I have cancer, it seems so unbelievable. Other times I am really mad that it wasn't caught earlier, I have been exhausted for years, and my doctor kept adjusting my thyroid meds but nothing worked. At one point she even sent me for blood work to check for cancer. But even the blood work before the hysterectomy didn't indicate cancer (C125 was 33.6) high end of the normal range. It seems so bizarre that in 2024 we don't have better screening tests.

MJS19

My CA 125 was 25, but the gynecologist sent me to a gyn/onc for a D&C, just in case, as the scale for the test he used was 30 as the highest "normal" score, and he thought better safe than sorry. I'm very grateful to him for that. I'm glad you're more comfortable with the level of information your gyb/onc is sharing with you. I think developing a strong relationship with your oncologist is the best thing you can do for yourself. Good luck!

beth2924

MJS19

Thanks, sorry you are dealing with this too. Funny how different doctors interpret data.

My GP acted quickly when I started bleeding (way past menopause). She got me set up for ultrasound, then obgyn, who in turn referred me to oncology. They debated doing an MRI and/or d&c, but given abnormal cells in uterus went ahead with a total hysterectomy. At the time we thought endometriosis.

It's been a whirlwind. Mediport in yesterday, chemo starts next week.

Beth

MJS19

Beth,

It sounds like you have an exceptional GP who can help you keep your body strong while you're in chemo. I'm glad you got a port. I went through the first 3 rounds without one because I just didn't want one more procedure, but once I caved and got one, it's practically my best friend.

My first course of chemo — carboplatin and taxol every 3 weeks for 6 rounds — was relatively easy, and I hope yours is as well. Neuropathy was the only serious problem for me.

MJS

beth2924

https://csn.cancer.org/discussion/comment/1715872#Comment_1715872

MJS19,

We were warned about the neuropathy, and my husband insisted on getting the ice gloves and socks. Our pharmacist (the one who taught us about chemo) was great she covered all the risks and was completely candid. She said there is concrete evidence that ice on hands and feet can minimize the neuropathy, but there is no proof an ice cap will save my hair. We decided it wouldn't be worth the brain freeze from the ice cap. I did get my hair cut short though. It was halfway down my back, and even if it only thins, I figured short hair would be less work while on chemo. I am scheduled for carboplatin and taxol every 3 weeks for 6 rounds too, I guess that is standard.

Wishing you the best.

Beth

MJS19

https://csn.cancer.org/discussion/comment/1715886#Comment_1715886

Beth,

I am so glad you are icing. I had my first three rounds without icing because I hadn't heard of it and ended up with severe neuropathy that risked me being unble to stay on taxol. Thanks to my onc recommending acupuncture as a possibiility, I was able to stay with the "gold standard" drug, as twice a week acpunture kept it just manageable. I stayed with acupuncture and within two years, the neuropathy was gone completely, which my onc had not expected to be possible.

Like you, I had long thick hair. I didn't cold cap the first time I had chemo but did when I repeated chemo two years later. I lost all but a very few strands of hair with the cold capping. However, my hair definitely grew back a litte faster and less patchy, although the patchy parts after the first chemo course (without cold capping) filled in pretty quickly. I started to cold cap this time, but gave it up after 3 rounds. I found it very hard to keep my hands and feet in ice at the same time my head was so cold, and then when I lost almost all my hair following the third round, I gave it up as not worth it.

I don't want to make you sad or pessimistic about your hair merely thinning (as opposed to losing it), but I find everything so much easier to cope with when I know what to expect. In case you are like that also, I will tell you are very likely to lose all of your hair from the taxol, if that is a drug you will be taking. Losing my hair has been the worst thing about cancer treatment — and that's saying a lot. ; ) Part of the difficulty was how many people told me that hair doesn;t matter, or it will grow back. I wanted to day "Fine, then let's shave your head and see how you like it." Cancer can, of course, take people's lives. But it also can take away so many other things. One of the things I found really helpful was not to let cancer take more away from me than it had to, which meant not letting other people decide for me how to feel ("it's just hair…) or how to define myself (the whole "cancer warrior" thing, which is such an enormous help for so many people, but it not my identity).

One last piece of unasked for advice ; ) — I work in a helping profession, and by nature and inclination, I am accustomed to helping out when friends or colleagues need something. Having been healthy and strong and otherwise fortunate in so many ways all my life, I didn't have expereince with allowing people to help me. What I learned is that when there is a serious disgnosis like cancer, people who love us often feel powerless, as well as sad, shocked, etc. Allowing people to do small things for you makes them feel so much better — less scared for you, useful, etc. — so thinking of small ways friends can help will help everyone involved. Right now, for example, my across the street neighbot, puts my trashcans out on the curb and brings them back in. I could do that myself, but sometimes when I get home from work, depending on where I am in the chemo cycle, all I want to do is put my feet up, not cope with the trash. I am so happy and grateful for that small kindness, and she just beams to be able to do it for me.

Good luck next week!

beth2924

MJS19,

Thank you so much for the candor about the hair. I expected as much, though of course one can hope right. You are so like me, I would always rather know the whole unvarnished truth. I am not good with surprises (good or bad) and do not like being out of control.

Sage advice about letting people help. I had actually read that a while ago- about letting others help in general and have been trying to make space for others to feel useful. It's good to practice this skill now before I am at my worst. Change takes effort, and I have always been the one to do everything for everyone.

I am really glad to hear that icing makes a difference for the hands and feet, also that if it doesn't do the trick there are other options to try.

Thanks for the luck for next week. All the best to you too. If I read correctly this is your third time? Yikes! I hope for you the third time is the charm and your cancer will be gone when you are finished with this round.

I so appreciate hearing from people like you with experience, only someone who has gone through this can understand the fears, anger, etc.

I don't have nearly the experience to share or any advice, but I am here if you want to vent.

Beth

beth2924

https://csn.cancer.org/discussion/comment/1715888#Comment_1715888

MJS19,

Thanks so much for the candor. I suspected as much about the hair. Like you, I want the whole complete truth. I hate surprises whether they are good or bad. I don't like to not be in control or prepared. I am glad to hear that icing is worth the effort for the hands and feet, and also that there ways to reverse the neuropathy.

Good advice about letting others help, so they can feel useful and reduce that helpless feeling. I hear you on the whole cancer warrior thing too. I haven't told many people outside the immediate family- I don't need that attention.

Thank you so much for sharing your experience and hard learned wisdom. Best of luck to you too. Did I read that correctly, this is your third time with cancer? Yikes! Here's to the 3rd time being your charm.

Beth

MJS19

Hi Beth,

I have a rare, aggressive cancer. I was stage 1, though, so I had about 75 percent chance that it would not recur. To give myself every possible chance, I followed my gyn/onc's advice and did chemo and radiation after the hysterectomy. It came back 22 months later. With this cancer, once it recurs, it is no longer curable. So, I knew then that I would be dealing with it always, however long "always" would be. I repeated the chemo, this time with herceptin, follwed by herceptin alone, then avastin. Avastin controlled the growth for more than a year, then I recurred again, which is now. My doctor wanted me to do chemo/avastin again because I made it through the first two courses with no apparent damage except neuropathy and tinnitus (the latter from the carboplatin), and the neuropathy was well controlled with acupuncture. I think the other thing on his mind was that, so far, I have not had any symptoms from the cancer itself, just reactions to the chemo. So he thought doing chemo again would knock the cancer back considerably. So far, it does look to be effective — my CA 125 dropped from the high 40s to 20.8 in the first four rounds. Normal for me on the particular test they are using is 12-13 (the numbers can be very different among the various manufacturers), so we'll see. My other option was Keytruda/Lenvima but it was his second choice, and I have heard so many awful things about the Lenvima side effects. Some people can use Keytruda alone, but the genetics of my tumor make Keytruda alone worthless.

One good thing for you to know, if you don't already, is that there are so many new/repurposed drugs that are newly available or will be soon. As you are in the early stages of dealing with cancer, there are many more drugs for you and your doctor and care team to choose from should you need them in the future.

The one thing I didn't want to know — and told my doctor I didn't want to know — was the recurrence percentage at my initial diagnosis. I knew it was a nasty cancer that tended to recur, and that was enough for me to know then. Once I decided to do the chemo, i looked at mob job as getting through it with the least damage to body and soul, which meant following my doctor's advice. Some people don't have that luxury, as they may not have access to truly expert care. I am lucky enough to have a highly regarded comprehensive cancer care center a few minutes from my work and home. It has made all the difference to me not to have to second guess things. My gyn/onc explains everything fully and gives me all the information I need to make choices. He also understands and honors my decisions about what I want for myself, which definitely affects his treatment and care recommendations and my decisions. Many people choose to try "one more" course of chemo when there is no real expectation that it will be effective. I'd always assumed that it was physicians who pressed patients to do that, but as it happens, it is usually the patient. My doctor knows I don't want that, and I trust him to help me not end up in that trap.

One other thing I want to mention — if you want or need a second opinion on anything, don't be afraid to get one. A good oncologist will not be offended if you do, and most likely will welcome it.

You sound really prepared for chemo next week. I hope you have an easy time with it. I was still shocked and sacred when I started chemo, as it was less than a month after diagnosis, just as soon after the surgery as was recommeded. The chemo nurses made all the difference, and by the second or third round, I was completely comfortable going to the infusion center. They made me feel safe and cared for. Hang in there next week and know that it will get easier, in terms of fear and anxiety, so much faster than you think it will.

MJS

beth2924

MJS,

I may have the logic and practical part down (already have a "go bag"). The emotional parts is just catching up to me. Like you I had a relatively short time between diagnosis and all the prep and start of treatment. I am taking a page from all of the great advice here (from you and others). I sent a message to my doctor asking for more details and advocating for the whole truth. I believe the plan for treatment is a good one, but don't have all the specifics I want. I made the case that knowing reduces my anxiety, and I need that. I hope she comes through- if not I will ask for a different contact person. This is about me, not her feelings. Whew- that took a lot to get to in my mind. But as a neighbor who has survived cancer said "you have the C word, you get to have what you need". I can't imagine better advice. I have never been a shrinking violet, but was so shocked that I haven't been my normal strong self. I am back, in part thanks to you, which means I am better suited to meet this challenge.

I pray for you and wish you the best.

Beth

beth2924

MJS19,

Thank you so much for the friendly and helpful advice. Like you I am the one who takes care of everyone else. Sometimes it's just easier to do things than think about asking for help- it is, as you say, a kindness to let others help and I have been practicing that already. It takes some practice and I thought I might as well start when I am feeling well enough to think about what others can do rather than leave it for when I am at my worst.

I have no doubt that I will most likely lose all my hair. Cutting off the braid yesterday was tough. A friend told me cutting my hair short before it fell out might make it less abrupt and shocking. I think it was good advice.

I really appreciate your candor, it's good to hear the truth. I am one of those people who wants to know as much as I can, even if it's bad news. I don't like surprises or to be out of control. I want the big picture, then all the details. I would rather be prepared.

Not many even know I have cancer, my family of course and a few of the neighbors and a couple of close friends. Most of our neighbors are older - we are the "young ones" that others call when they need help, or are the ones to take meals when they are sick. It's going to be quite the switch for everyone.

Glad to hear the icing of the hands and feet has value. I am not sure how I will feel about the hair- I tell myself it's no big deal, that it will grow back- but that's now- before it happens. We'll see. The good news is I have all my scarves from the 70s and 80s that I wore with business suits. They may get some more use- never throw out anything- right!?. Who am I kidding, I will probably stick with one baseball style cap that I already wear all the time.

I am so sorry to here you are on your third time (did I read that right?) Thanks for the good wishes for next week, I wish you all the best too. I don't have nearly the experience or expertise you have, but I am here if you just want to vent.

Beth

beth2924

Whew!!! First treatment on Tuesday, scary but not horrible. Wednesday wasn't bad. Then wham. They aren't kidding about when those steroids leave the system. And I thought I knew what fatigue was like, having dealt with it for so many years prior to my diagnosis. We iced and still have pretty noticeable neuropathy. (Makes typing a challenge.)

My admiration to all of you who have been going through this. I thought I was tough but this is kicking my butt. I understand (hope) that it only lasts this bad a few days each treatment.

One day at a time.

MJS19

Congratulations, Beth, on one down! Hooray!

I had treatment this week, too — taxol and avastin on Tuesday, and the carbo desensitization Wednesday. I take the dexamethasone for three days after each treatment and really dislike it, but it does keep the immediate wham of neuropathy and other side effects down until the chemo is at least out of my body.

How easy was your icing? I find it much harder this go round because my hands are so sensitive to cold from past neuropathy. Thank goodness for acupuncture. I hope neuropathy doesn't take hold — and it doesn't for many people — but if it does and your state has medical marijauana, you might want to try THC patches. I have used Mary's Medicinals patches, but they are very hard to find. Balms and lotions that combine THC/CBD have also been helpful. Topical products are released really slowly into your bloodstream, so you have no sensation of being high. I was reluctant to try them — I'm not sure why — but my oncologist really encouraged me to try it, and it definitely helped. Patches and balms are expensive, but fortunately, acupuncture got rid of the neuropathy after several months and I no longer needed them.

After my first treatment I wasn't as scared. but I did feel like it I had so many more to go. If you're feeling that way, too, I can almost promise you that it will go so much faster than you think it will.

Take care!

beth2924

MJS,

Thank you for all that you have shared. If you hadn't told me about the neuropathy I think I would have flipped out. Vermont is now not only a medical, but recreational marijuana state. I like the idea of an option that doesn't make me feel high. I have never been one to enjoy being out of control. I will take a look into those- thanks.

Sorry you are spending your summer in chemo too. Your advice has been a true godsend. Everyone means well, but can't imagine what it's like.

Thanks again.

Beth

BadassMom

I just want to jump in here and say you should have multiple sets of frozen gloves and booties. One set really doesn’t last more than 20 minutes for me. I have been very dedicated to the gloves and booties from the beginning because I work with a lot of people who have neuropathy from diabetes. Unfortunately, I have a little bit of numbness and tingling in my thumb pointer and middle finger despite using the ice.
when I discussed lifespan with my gynecologic oncologist, she educated me that when you’re looking at five-year lifespan, it only looks at whether or not a patient is a alive or dead, not the cause of death. This was comforting to me because you can’t lump cancer longevity in with being elderly, not seeking treatment, and car wrecks. An additional piece of information I would encourage you to seek from your oncologist is the exact type of cells you have. My cancer is endometrioid ovarian cancer and is more rare.
Lastly, I had the most beautiful silver hair. People would stop me all the time and complement me even in the grocery store. Strangers. I cut my hair to a Bob before Chemo and within three weeks I was having my head shaved. My scalp really hurt. my hair was falling out with a vengeance. Every time I took a little pinch of hair and pulled on it a handful would come out. Looking back I wish as soon as my hair had started falling out I had shaved my head. I think that might’ve preserved the overall coverage. My sister does cancer massage and said that it stops hurting and falling out because there’s no pressure on the follicle. I think I waited too long to get the pressure off the follicle. I shaved my head to probably a one on the clippers at a local salon which provided the service to people going through chemotherapy. This was provided by a person who used to be very involved with Look Good Feel Good. I am four rounds in and still have that haircut from one on the clippers. I decided not to wear a wig even though I tried them on about 10 times at the wig sales place. It is hot enough in Virginia without having that big thing on my head. When I left the salon for my haircut, I did wear a wig I got on Amazon for 25 bucks. I felt like I could feel it slowly creeping up my head and it was going to pop off. I feel really great about sporting my bald head. I could not imagine wearing the ice cap. The hands and feet are enough for me to ice. Now people tell me I have a nice head ha ha. If you haven’t already cut your hair, maybe try leaving it at a three or four on the clippers when you shave your head. I do wish I had a few more hairs.
This is your journey and I wish you a lot of luck.

MJS19

One of the great things about this forum is that it highlights how many different choices there are, so that everyone can find what works for them. For anyone who chooses a wig, I would encourage you to look until you find a comfortable one that works for you. Unfortunately, this usually translates into an expensive one. The wigs I used the first time were lace front from Jon Reanu, which cost about $400, but they were comfortable even in summer heat.

Badass Mom, how coll that you still have hair four rounds in! The taxol left me completely bald after two, even I had my head shaved before any one it started to fall out. I thought that would be easier on my emotions than to deal with hairing coming out on my pillow our in my hairbrush. It took me 3 months post chemo to grow a stubble. I would have loved to have ended chemo with that kind of a "head start."

It souds like icing is working very well for you. Like you, I found the gloves didn't stay cold enough long enough. For my second course of chemo, I switched to holding small ziplock bags of ice, which is what I think they do at Sloan Kettering.

Good luck.

beth2924