Blessed, but Threatened
Hello Everyone,
I am Nettie, I am 62 years young and I was just diagnosed in December 2021 with a grade 2-3 Serous Uterine Cancer. I just had a total hysterectomy on 1/12/2022. I was totally blessed with a final result of coming in at a Stage 1A after surgery. This rare serous cell is usually much further along than 1A at the time of diagnosis. I was on it within two weeks of spotting. My oncologist says that I may even be one of the only people on earth who was possibly blessed with coming down with Delta Covid in the middle of October of 2021. Thank God I was vaccinated. 3 days into the worst of the Covid, my spotting started. My Oncologist says that the Covid very well may have thrown my hormonal system into a tizzy and caused the spotting to happen even earlier than it may otherwise have done so. Interesting detail, huh? So anyway, I had the robotic total hysterectomy last week and went home the same day. I am recovering easily. It has been 5 days. I think I used 2 pain pills the second day. That's it. It is very manageable already. I have to remind myself not to do illegal acts already. Telling myself "Sit down, stay calm, you have to rest, don't pick that up". The first couple days were interesting with the pee challenge of getting going, but patience and perseverance won the day. Just relax and take your time. I took a 5 second roller coaster ride when hearing my final results. I was instantaneously thrilled to hear that I was at Stage 1A because the chances of that happening were so low. My very first thought was, OMG, I don't have to do chemo like the Dr thought!! Yay!! I began to develop a very large smile. I was then informed that the cancer cell was a grade 3. My research told me to immediately deflate!! So, here I am at Stage 1A and getting to do 6 sessions of chemo and 5 of radiation anyway due to the probability of recurrence from this very aggressive grade 3 cell. What the hell? lol I wasn't sure which reaction was taking the lead with me. I just kept bouncing all over the place in my head. Good, Bad, Good, Bad! I finally settled in once again with "it is what it is". I will begin my chemo on February 7th, 2022. I think I am handling it pretty good so far. I am going in, not naive (I have had 18 surgeries in my life) but planning to perceive the chemo as my friend (as much as I can). Yes, I am probably nuts in some ways. But really, I see it like this: if not for the chemo, I could not attack this serious aggression against me with equal aggression, right? I would have no battle to fight. So regardless of what it does to me, in the end, chemo is my ally and chemo is trying to buy me some more time with my cherished loved ones. I am really not ready to leave just yet anyway! I am now reading up everything I can about the chemo, now that I understand the whole diagnosis. I am one who loves to research any subject anyway. I feel more comfortable confronting the threats against me if I completely understand the level of the threat. The unknown scares me to death and frustrates me at the same time. I also like to avoid making future mistakes in something as important as my life. This site helps me with those things. Just so you know, great tips on suffer reduction are always welcomed!! I have learned so much from the other women on this site. You give me perspective, advice, teaching and I am sure that I will also have your support moving forward. Always forward! After all, you ARE the only ones who know what I am truly thinking! This site is invaluable. Thank you for it! I will update you with my chemo experience later. Much love and luck to all.
Nettie
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Welcome Nettie. Really glad you found us and so sorry you needed to. There are many of us on here that have /had Serous. So, please ask anything that comes to mind as you progress through your treatments. While chemo is not easy, it is doable. I am 5+ years out post treatments and am doing well. I think you will find a balance during the next 6 months. Be kind to yourself. Rest when needed. And learn that not everything has to be done "right now". My attitude was very similar to yours and it served me well. Based on what you have posted, my bet is on you to get through this and come out the other side more grateful and much stronger.
Please keep us posted.
Love and Hugs,
Cindi
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Hello, I had clear cell and serous and I was also 1A and grade 3. I am a little over 3 years from surgery and in Feb will be 3 years from my last chemo. I am very lucky because I ignored my spotting for months before finally getting checked out. After the diagnosis things moved fast! I had a couple of hard days right after surgery and also one unusual odd thing but then it was an easy recovery. I researched onc/gyns in my general area and found a top rated one who I love and she happens to work at an oncology center. I think that is a plus, because cancer treatment is all they do, I don’t feel lost in the shuffle of a large hospital. But that’s just my feelings. I chose brachytherapy over external radiation because I am scared of radiation in general. That’s just my personal opinion, my Dr was ok with that choice. I would be happy to share my chemo experience with you. It is not a walk in the park but it is doable. Cheryl.
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Thank you for your kind words Cindi. I will try hard to not want "NOW", but no promises!! That one might be a bigger mountain for me than the chemo itself!! Lol
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Hi Cheryl, I have found a wonderful Onc/Gyn! I just love her! This leads me to another story! Lol My Dr's name is Sara Jordan. My last name is Jordan. A few years ago, I lost my 29 year old great niece to cervical cancer. Her name was Sara. I said to myself, "this has got to be a good sign"! This is definitely my Dr going forward!! Lol
During my first appt with Dr Jordan, she asked me where I was from. I told her I was born in Rochester, NY but I had grown up mostly in Calif. To our astonishment, she says incredulously, "I am from Rochester, NY too and also lived in Long Beach, Calif!!!! So, we have decided that I must be being taken care of by a long lost cousin on some level! Who'd a thunk it and what are the chances??? My Dr went straight to brachytherapy and feels that I can avoid external radiation all together! Another plus!! I do have an initial question about the chemo. I see many women talk about the icing helping with neuropathy. I am interested in this due to already having neuropathy in both legs from a bad back (too much work and play). Do you agree with that? If so, do I need to buy something to make this happen or do they help me to get it done when I go for the infusion at the clinic? Yes, I am very interested in any tips or tricks you may have for me. You are the expert after all. Thanks for your reply Cheryl.
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The opinions and methods of icing can be all over the place! There is solid evidence that it helps. The theory is that by slowing the circulation to your hands and feet you can lessen the effects of the chemo. Some people go all out and some only a little. The nurses at my oncology/ infusion place always offered ice paks so I just kept my feet and hands cold with those. Places and personal choices are different. Sometimes you have to bring your own cooling supplies. I don’t really have any neuropathy except two of my toes are very slightly numb, so 🤷♀️.
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Welcome, Nettie,
Glad that you found us and have been able to profit from our experiences. I also was dx with 1a serous, in July, 2018, so far NED. I only had 4 chemos and 3 brachy. I believe pelvic radiation is mostly reserved for those with higher stages, my docs ruled it out for me at the time of treatment. I did icing, but it was not something they automatically provide or are willing to accommodate, so you should ask your oncologist before your treatment what their policy is regarding icing. For me the dread of chemo and radiation was totally out of proportion for what I actually experienced. No fun, but so much better than I had thought it was going to be. Let us know any other questions you might have as you go through your treatment. We are here for you!
xxoo
Denise
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Well, I guess I will see when I get there then! Thank you Cheryl.
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Thank you so much Denise. I have an appt coming up to discuss the chemo and I will ask then as you advise. Wow, I hope my experience is the same as yours! Thank you for being here for me and congrats on your NED!!
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I haven’t visited on here much lately but it’s a rainy day and I have nothing to do! Lol So I am quite available today! I have to say that your infusion center plays a big part in how your treatment days go. It may sound really odd but my actual treatment days were not bad. I just knew it was something I had to do but those nurses made it as pleasant as possible. I was given other medications to guard against allergic reactions and nausea, I never had either of those. It was pretty much an all day thing for me. It was over an hour drive to get there (my husband took me) and between all the lab tests and chemo taking 3 to 4 hours at least, it was a full day. My place offered the ice paks, heated blankets, snacks and various beverages. Also we called out for lunch because they don’t want you to have an empty stomach. My husband stayed with me and my daughter visited. Now with covid restrictions they only allow one support person. The chemo effects don’t usually hit you till the second or third day after. Will you have a port put in? That makes the infusions a lot easier. I have a 6 month check up tomorrow, and I do get a little nervous but I feel fine so I’m sure the check up will confirm I am fine. ( by the way, I am 69)
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One of the things that does bother me is that I am being told that I can have someone with me at the first session, but not after that. Our hospitals are over capacity in New Mexico, so they are trying to subdue the virus as much as possible. I can say that I am frustrated that this had to happen during a pandemic! I am wondering how anyone else deals with the advice to stay away from everyone because of compromised immunity. How have you all handled this very difficult issue??? Yes, I am getting a port. Probably a good thing, my veins are lousy. I would be a pin cushion without it. I am doing that on February 21, between session 1 and 2. Is the port as inconvenient to work around as one may think? I am very sure that I will have your same nervousness every time I get checked later too! I guess once blind sided, twice shy! I think that means that you have excellent common sense! I wish you everything wonderful with all of your appts. Thanks for the help!!
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I just wanted to welcome you! You have some wonderful women behind you here, and you have the right attitude. Welcome to our home here in the CSN. We are a supportive group, and we'll be cheering you on.
Deb (2)
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Thank you Deb!!
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Although my sister would drive me to my chemo appointments and then pick me up at the end, I actually preferred being by myself while I was getting the infusions. I brought my computer and worked while I was there. A friend did take me once and stay with me for the day, but I didn't find this was really necessary. I would pack some things for lunch to bring with me.
For my final four chemo treatments I was in the hospital for three days each time. People would stop in to see me but, again, I was fine being by myself most of the time. I okay while I was in the hospital, but I felt really lousy after each of these treatments once I was home. So for me, it was more important to have help after I was home and felt so awful rather than when I was receiving the treatments.
But most of the other people receiving infusions did have a family member or friend with them. And if you decide to try icing your hands and feet to try to prevent neuropathy, then a second person would be really helpful.
I had a port and found it easy to deal with during infusions. Some others receiving treatment didn't have one and that made it a lot harder for when they wanted to go to bathroom or move around. In my case, I just had to unplug the IV pole and roll it into the bathroom by myself. I do recommend, however, wearing a top that buttons down the front so that the nurses have easy access to the port.
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Yes, a port is with having. It is not a huge surgery to have it put in. At my treatments, everything was hooked on a rolling stand so I could wander around or go to the bathroom whenever I wanted. Don’t worry too much about not having someone with you during treatment, you are usually a little sleepy if they load you up on Benedryl first! I agree, when you really need help is for a few days right after each treatment.
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I am one of the serous crowd (3C1) diagnosed 9/19. I completed six rounds of chemo and 25 radiations. Brachy was ruled out for me. My best advice is: Sennakort two days before and two days after chemo to avoid the dreaded constipation. Ice as much as you can. I ignored my feet the first go around and have neuropathy there but not my hands. Eat 30 grams fiber daily and exercise as much as possible, even if it means just laps around the inside of your home. Best of luck to you.
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That makes sense.
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I just added Senna to my shopping list! Lol Thank You!!
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I was alone by choice for all of my chemo and radiation sessions. Infusion days started with early morning (6:30 am) blood draws, then a few hours wait for the infusion appointment, then a good 6 hour time from start to finish. I am a night owl, so having to get up at 5:30 am to get to the hospital left me very sleep deprived, I mostly slept through the entire day after they got the initial bag started. My husband (also sleep deprived) wanted to be a good guy and hang out with me, but I told him just to drop me off and I would call when I was done. We talked on the phone usually once in between my naps, so I really didn't feel alone. He was so grateful to not have to stay all that time with me! I was so sleepy (even with the icing) that even reading or watching tv was too much. I was worried that I might get hungry after all day there but I was not, so I didn't even bother to bring a snack after the 1st infusion. My infusion center had private rooms so it was probably easier to sleep than those facilities that are one big room. Hope your infusion goes well!
Denise
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