Let's have a roll call!
Comments
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We have another young woman in this group who is currently dealing with the pain of needing a hysterectomy, and not yet having a child. I know how miserable and heartbreaking it is, as I had horrible problems with trying to have a baby (two ectopic pregnancies), and used to suffer depression every time mother's day rolled around. You have not gone through chemo or radiation, but you have gone through tremendous pain and heartache, so you absolutely belong here! and I am so glad you joined. Many women in this group have various kinds of cancer, some less invasive, some moreso. We will all welcome you.
Thanks for joining us (wish you didn't have to).
Deb 2
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Hello!
I have been reading the posts but up until now have not posted myself. I was diagnosed the beginning of May '21 and had emergency surgery 5/15/21 due to a rupture of the ovarian tumor. Yup I get bonus points for uterine and ovarian cancer. I am 56yo.
1. Type of uterine cancer - Endometrial Adenocarcinoma w/ LVSI, 70% myometrial invasion. Grade 3 Stage I B.
Ovarian cancer- Endometriod carcinoma seromucinous subtype. Grade 2 Stage I C2
2. Treatment- My initial treatment consisted of surgery: hysterectomy, bilateral salpingo-oophorectomy, omentectomy, & appendectomy. I went through 6 rounds of Taxol & Carboplatin and 28 rounds of radiation IMRT.
3. Current status-I just finished radiation on 12/29- in time to start the new year with out needing treatment. I had a CT back in October that was clear. Follow up with my Gyn onc 1/11.
4. Anything else you'd like to share or what you've learned from this journey, etc. Well I've learned that I may not have longevity in my genes- like I used to joke. I had best live now and don't wait for retirement. Not that I won't get there. There are no guarantees in this life- make the best of it.
I appreciate all you brave people for posting!
mj
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Just thought I would check in here. I was 3 years from my hysterectomy in Oct. And will be 3 years from my last chemo in Feb. The standard 6 rounds, followed by 3 rounds of brachytherapy (which I still have mixed feelings about) I am doing well and feeling hopeful. As a refresher, I had clear cell, stage 1a. As a side note both my husband and I had covid back in Sept. I am 69, he is 67. We both got monoclonal antibodies and neither of us got terribly sick, thankful for that.
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Hi,
2015 Stage 1 b hysterectomy, brachytherapy
2016 recurrence in 2 pelvic lymph nodes, chemo & full pelvic radiation put on aromatase inhibitor
2017 (6 mod after chemo) recurrence Desmoid tumor in stomach muscle, contamination from laparoscopic hysterectomy, brachytherapy (very traumatic)
2017 in addition to AI, put on Ibrance 125 mg
2020 reduced Ibrance to 100 mg due to poor blood count recovery on week off
in remission since Dec 2017!
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I am so new to my journey that the shock is still very fresh. I just got my biopsy results on Thursday and I have High grade endometrium uterine adenocarcinoma. I have an appointment on Friday with the gynecologist oncologist. When I went to the doctor for bleeding after menopause, I never thought I would have cancer. I have had to have a breast biopsy and a thyroid biopsy before and they were fine, hoped this would be the same but no such luck. I hope to find support and others who can help walk me through this journey.
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hello icart56, I am glad to hear you are working with a gynecologic oncologist to move forward with your plan. There are lots of tips on what to ask, and while I think most of us have had a complete hysterectomy as the first step, they are the ones who need to do that surgery.
Lots of lovely ladies and their respective family members here to lend their hand. I would suggest starting a new thread since we are pretty far down on this one and sometimes things get lost. I know the members here are happy to help.
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Very happy to help. Like NoTime said, there are many people here to listen and support you. So sorry you're feeling that horrible shock. We know that feeling, and it's so hard. Try to do special things to pamper yourself, and if you are able to get someone to go to your appointments with you, that's really helpful. They can help listen. Get someone to drive you, as you may be distracted <3
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Some of are wired to be over-thinkers, but in my time in this forum, I've noticed that every single woman goes through this massively anxious period of time between when initially diagnosed and the next step ---which is a consultation with the gynecological oncologist who does hysterectomy surgeries. On the one hand, you know you have cancer and you want to get the surgery done as quickly as possible, but on the other hand, you are dreading it all, fearful, and who likes surgery? No one is raising their hand!
I found that I had to use some medications to stay calm. Specifically, I asked my doctor to prescribe something for anxiety, and when I got too wound up, I used it. I also used CBD / THC gummies to stay calm, which was quite an experience, as my time in the shops for such items has been limited. I had to get a lot of advice about what type of gummy to buy, but honestly, I had to medicate when I got too distressed. My modus operandi is to learn as quickly as I can, as much as I can. This has always been my practice for needing to know something quickly, particularly in terms of decision making. I found myself on the computer for hours each day, studying oncology - types of uterine cancer, grades, stages, types of surgeries, benefits of this radiation versus that, external beam vs. brachytherapy, on and on. I was running myself into the ground.
In time, I realized that the best thing you can do for yourself is to find a superior doctor and clinic to work with. Put in time to find someone you do well with. Make sure you figure out what you will need--are you a person who asks a lot of questions? Let your doctor know that. Are you someone who prefers to put the doctor in charge? make sure your doctor is good. Have a gyn oncologist do your hysterectomy. That is crucial. Take one step at a time, one day at a time.
Shower daily, try to look good, as it will make you feel better. Practice some gratitude. If you have a cat or dog, that helps, as you can hold them and pet them when you feel miserable. And accept that some days are just going to be hard! We are all here for you, and will follow your journey.
Deb 2
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icart, I have not seen where many conversations are in the Chatroom for gyn cancer - the Chatroom tends to be people online checking in with each other, etc., it is a lovely community. The Uterine board is usually where we keep all over conversations, like this one, and without looking, I thought there was tips on here to show us all how to start a new thread. I am hoping someone can point it out - I just can't remember if it is there.
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There is a plus sign inside a blue circle. On the right. Click on it to start a new topic.
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Hi, Heather and new here.
1. Type of uterine cancer, stage and grade: endometrioid adenocarcinoma, stage 3B, Grade 1 within uterus, Grade 3 on serosal surface of uterus, right ovary and peritoneum. (Nodes and tubes negative) went into surgery only aware of the grade 1 within uterus. Found out from Doctor next morning in the hospital that it was "way more extensive that they thought" and was listed as stage 4 on my patient portal for about a month while it was sent out for more evaluation and presented to the Tumor Board partly because they had to decide if it was 1 cancer that spread or 2 primary cancers.....
2. Treatment: Total Hysterectomy with BSO (in 10/21) was supposed to be robotic/laproscopic, but because of the extent, they switched to abdominal incision. 6 rounds of carboplatin/taxol, followed by radiation 5 weeks and 2 brachytherapy.
3. Current status: Chemo infusion #6 this week (hopefully!) It was delayed because my platelets were at 87, too low. Teaching Kindergarten while doing treatment....dealing with neuropathy in my feet that is bad enough that I am using a cane when I go out so I don fall on my butt.
4.Other - still trying to figure it out
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Welcome Heather, although we're sorry you had to join us.
I, too, went into surgery expecting to be Stage 1 based on the pre-surgery CT-Scan but learned after surgery I was Stage 3B. So, I can relate to that disappointment.
Unfortunately, neuropathy is often a side effect of carboplatin/taxol. My oncology nurse said that it can dissipate in some people after treatment ends, but if it's still around after a year, assume it's permanent. Hopefully you'll be one of the lucky ones.
Kudos for continuing to teach during treatment. I can't imagine keeping up with a room full of kindergartners during chemo, but I suppose they do keep your mind off cancer and treatments.
Lots of women here have gone through radiation, so ask any questions that you might have on that treatment. This is a recent link about pelvic radiation: https://csn.cancer.org/discussion/324643/any-tips-for-external-pelvic-radiation#latest
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Hi Heather! quite a story....and there are so many women and stories here. I'm a retired teacher---Language Arts at the high school level. Freshman boys are similar to kindergarten students. You can never turn your back on the ocean....lol.
Hope all your treatments go smoothly, and again, welcome : )
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Type/Stage/Grade: At age 45 years old, I was Diagnosed September 2005 with Endometrial Adenocarcinoma Stage 3A, Grade 2; Found in the uterus, left ovary and cercix
Treatment: Carboplatin & Taxol. After a reaction to Taxol changed to Gemzar. For six months. After that had 3 HDR Brachytherapy That was in 2005/2006 No other treatment other than surgeries.
Recurrences/Issues: Recurrence in 2010 (just surgery - micro cells found in 1 lymph node). Ureter reinmplantment surgery due to scarring from radiation (2015); Recurrence in 2018 - removal of rectum and piece of large bowel; removal of hernia mesh and removal of small bowel requiring an ileostomy. Cancer found in 2 lymph nodes and part of the bowel. No further treatment. Recent 2022 surgery for Lysis of Adhesions (no cancer found) and also removed another small bowel section.
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Kathy,
I'm glad to hear that you're back home and recovering from your surgery, even if you had to spend extra time in the hospital. I hope that removing the scar tissue and the "stuck" bowl piece relieves the issues you were having. And the "no cancer" news is the best of all.
I continue to be awestruck by the number of surgeries and procedures you've had done over the years. And that you're able to get back on your feet and keep working is just remarkable to me. The term "warrior" gets used here occasionally, but in my opinion, you're the true definition of a "warrior!"
(I tried leaving this message on your other post, but it's "stuck" in draft mode for some reason).
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Hi, Heather
Oh, my! I can relate to initial dx of stage 1 after surgery that escalated to IIIA Endometrial Adenocarcinoma after pathology! I just sat in the medical office parking lot and cried.
You are warrior, already back in the classroom with your kindergarten class. Amazing woman! I know those sweet little faces help to boost your spirits and divert unwelcome thoughts.
Hopefully, with an improved blood count, you are just about to ring the chemo done bell! I had neuropathy in my hands and feet from diabetes and a previous cancer but mine did improve over time away from chemo treatment. Now, I just have occasional numbing in the bottom of my feet.
I had 6.5 weeks external radiation and 3 brachy. Many ladies on this site have had the same treatment. I am NED as of 1/14 CT scan.
Ask away, we are here for you.
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