Newly diagnosed

LindsaySh

Hi,

I have recently been diagnosed with Stage 1A Ovarian clear cell carcinoma. I've had a total hysterectomy due to a fast growing cyst, which is how it was found. Does anyone else have this type? I'm 3 weeks post-hysterectomy and have my appointment on the 15th to schedule my chemotherapy.

NVenzon

I'm 1B clear cell. I had a volleyball sized tumor taken out on 11/9. I had total hysterectomy, along with both ovaries and tubes taken. I'm 51. When the tumor came back borderline when I was on the table, the surgeon treated it as if I had cancer and did all necessary biopsies and pelvic wash. The pelvic wash came negative malignancies, as did all of the biopsies. Unfortunately, the tumor came back as clear cell. They also found clear cell in my left ovary and a different cancer in my uterus.

My gyn oncologist said the uterine cancer was taken care of by taking the organ, and there is only a 1% chance of recurrence. She is giving me a good outcome. She said b/c nothing has spread and I'm 1B, if I choose to just monitor, I have a 30% chance of recurrence. She recommended I do three rounds of chemo, which she believes will cut the recurrence down to 15%. I'm doing the chemo.

I have a chemo ed class today, which will give me the low-down on the chemo and I hope to find out when I start the chemo.

I'm scared to death. I can't help but think I'm dying. I have good and bad days. Some days I'm a puddle of goo and other days I feel like I'm superwoman and will slay this beast. I keep telling myself 15% is pretty good odds as a very good and long life.

Good luck!!! And I hope this helped a bit.

LindsaySh

https://csn.cancer.org/discussion/comment/1691099#Comment_1691099

Thank you for sharing with me. I'm 44, and I'm scared to death, but trying to be strong. They told me I'm a miracle because they moved my surgery up almost a month. My DR said that if we had left it for today, I would have been a different stage. I go Wednesday to consult for the chemotherapy and schedule them. I'm getting 6 cycles of it.

I have HPV high risk DNA which makes me susceptible to other cancers later on, that's why I'm having 6 cycles. I'm worried. Not about the cosmetic side affects but the tiredness. I have an 11 year old and don't want to not do our normal things together.

Please let me know how your appointment goes today! Maybe we can support each other.

NVenzon

My name is Norma, BTW.

The appointment went good yesterday. They went over the drugs I will be getting, carboplatin and Taxol. I won't need a port at this point since I'm only getting three cycles. The nurse was very kind and reiterated that they take an individual approach to treatment and the care team will be following all the way to make sure I was getting through it okay. She explained the effects of the chemo is different for everyone. They do try to keep on top of the nausea and she gave me a little formula to follow for that. Then of course the constipation and bone pain. For the bone pain they told me Zyrtec and Pepcid AC - two days before and two days after chemo. The sites on FB I joined have all said Claritin. The nurse told me they use to tell patients that, but they find the Zyrtec and Pepcid AC works better.

She said the tiredness will hit days 3-7, with 3 and 4 being the worst and it getting better after that. She told me not to feel guilty if I need to sit and rest or nap. She also pointed out they want me to lead my normal life and not allow chemo to get in the way. That's why diet and getting up and moving helps, even though it might be hard. So, I'm going to take all of that advice.

I'm also going for genetic testing later this month to see what they find. I'm having a hold up with my chemo due to insurance. Very frustrating b/c I just want to start. I figure the sooner I start the faster I'm done.

I don't think the hair loss will bother me, but I did get it cropped short b/c I don't know how it will strike me once it starts happening. My husband is going to clip it short for me. OH....the nurse also said NOT to shave your head. To just shave it as close as you can. She told me one lady literally took a razor to her scalp and ended up with a horrible infection when the hair began to grow back and then curled back into her scalp. ICK!

And of course, we can support each other!!! I don't blame you for being scared to death, b/c I'm scared to death. I'm terrified to be honest. I also think it helps when there is someone walking a similar journay. We can hold hands.

LindsaySh

I'm Lindsay, nice to meet you.

I'm having the same drug cocktail as you, so all of that info is amazing. I'm on leave from work due to the hysterectomy, and not planning on going back until after my second cycle. I go in to the office at least once a week, but my anxiety is so bad I get overwhelmed. It stinks because I can usually handle anything, but my emotions are a mess.

I didn't even think about the bone pain. Ick. Ive been active throughout my surgery recovery, walking and being active, but resting if needed. I hope to keep that up.

I hope your insurance approves everything soon. They approve these surgeries that remove the cancer so it should be no issue to treat it. I'm sorry you're going through that. I'm like you. I'm hoping to just get it rolling asap.

[Content removed by CSN Support Team] I'm thankful you replied to me. 🙂

NVenzon

Lindsay,

Well, the support team removed your email address before I could write it down, I suppose since everyone on this discussion board can read this it's probably not good to give out our email addresses.

I'm having really bad anxiety also. I've suffered w/ anxiety my entire life and have been on Zoloft for over ten years...that's not even helping now. My cancer team also includes psychiatrists/counselors/etc., which my husband and I will be taking full advantage of. There is no harm in it and I figure they may help give me a different perspective. What I've been finding is the anxiety comes ang goes. What's making it difficult for me is when I've been full of anxiety (before it hit the fan) I would get up and move - walk the dogs, work in the garden, work around the house, make sure I'm really busy at work, work with my horses, etc.; and that always calmed me down. Now I'm four weeks into my recovery, feeling physically good, but my surgeon has not cleared me to do most of the stuff I'm used to doing or wanting to do. In turn, here I sit going over and over and over all of this stuff in my head.

I remind myself I've only known "the news" for two weeks and in a way I'm mourning. I'm mourning my old life and trying to wrap my mind around my new life of chemo, recovery and doctor's appointments for the next five years with the "recurrence" noose around my neck. I do know that I will find peace eventually...it's just not happening as fast as I would life. 😕

Here are the FB groups I joined: Ovarian Cancer OCCC (this is specifically for Clear Cell), Ovarian Cancer Support Group, Clear Cell Uterine/Endometrial Cancer, Sisterhood of Ovarian Cancer Survivors, Ovarian Cancer Awareness/Ovarian Cancer Support, Ovarian Cancer and Chemo Support Group. You probably found most of these though. I find the groups helpful in how others are getting through this. I'm also finding it helps to see other women are surviving 5, 10, 20 years with no recurrence.

Let me know how your appointment goes on the 15th. We can compare notes.

Take Care,

Norma

NoTimeForCancer

Norma and Lindsay, I am a visitor from the Uterine board and wanted to stop in to cheer you two on. As you have found, an OC diagnosis is overwhelming and your other gyn sisters are cheering you on.

Hugs ladies!!

LindsaySh

https://csn.cancer.org/discussion/comment/1691259#Comment_1691259

Thank you! ❤️