1. < Gynecologic Cancers

Newly diagnosed with ovarian cancer (OC) ~ looking for support

Posted by paisleybandit @kristinfloyd, Feb 5 3:30pm

Hello-
I am newly diagnosed with oc. I was diagnosed out of the ER at Mayo Clinic, where I am lucky enough to work. I had bloating and bleeding back in October. Saw GYN at Mayo, Pelvic US showed nothing. No concerns. I thought my fibroids were acting up. The GYN said my fibroids were "stable". (no increase in size) I was also on a blood thinner at the time, for PE and DVT that occurred in March 2023. I was given the OK to stop blood thinner, and bleeding stopped. Bloating subsided. Until January. I had a "full" feeling, I felt pregnant, hard to get up, sleep, and appetite reduced. Saw PCP 1/24. She ordered CT abd/pelvis and some labs. On 1/25 I went to ER, as I had bright red bleeding, and I was just so damn uncomfortable, I kept telling my husband "something is not right in my belly". The ER female doctor told me I had cancer after an excruciating pelvic US and CT Abd/Pelvis. I had sent my husband to get lunch. I was alone when she told me. My blood literally went cold. She told me it had spread, into the peritoneum. She contacted GYN/ONC and they added on some labs and I was sent home, with follow up with them 1/31. I did not google, did not look at my patient portal that whole time. I am usually a knowledge is power kind of girl, but I could not. I was just sick, both emotionally and physically. I met with GYN/ONC provider on 1/31 at Mayo, and she was a gem. She has given me some hope, and I am choosing to follow her lead. She is attentive, confident and i trust her so much. I also had a CT biopsy scheduled the same day, but, she offered Paracentesis instead, immediately after that appointment, and said she could get what she needed, likely with the fluid they took out. They removed about 2L that day, and I felt relief immediately. And she got what she needed. Those results came in last week, also, and I allowed myself to look at portal. My blood ran cold again. I had to close it, the words advanced and cancer were there and I could not look again. The Gyn Onc called me the next morning (last friday) to tell me that the results were as she expected, no surprises for her. She is recommending Chemo for 3-4 rounds, Surgery, then more chemo. I see medical oncology this coming friday. (my Gyn/Onc does not write for chemo/ instead partners with Med Onc). I am ready to start treatment. I just want this "out of me". I am trusting the chemo to shrink and "dry things up" as she said, so that surgery can be optimal. I have good and bad days. I went out for a motorcycle ride yesterday. It was nice to be in the sun and fresh air. (I am in Arizona). My husband is a gem and very supportive. I told my adult son, who is also amazing. I have told a few close friends, but no one else in my family. My mom is 86, and a very young 86, she has lost 2 kids already, and I am not sure she could bare a 3rd loss. I am waiting to tell her until I know more after I have chemo plan. I talked with my Pastors as well. I am a private person, I play it close to the vest. So telling people feels so awkward to me.
I have my list of questions written down for friday. It is so helpful to begin to read others stories like mine. I feel like I am poisened, I feel like a leper. I know I am in my head, but feelings are feelings. Not right or wrong, they just are. Hoping to be strong enough to stand alongside all of you in this journey.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12 4:48pm
In reply to @irishgirl1313 "It’s such a difficult diagnosis to get - thoughts and prayers to you. You will experience..." + (show)
@irishgirl1313

It’s such a difficult diagnosis to get - thoughts and prayers to you. You will experience a wide range of emotions throughout this journey, just remember that you are still you despite the changes you will go through. Wishing you all the best and lots of love and support.

Jump to this post

@irishgirl1313, such an encouraging first post. I look forward to learning more about you. Were you also diagnosed with ovarian cancer? What treatments have you had? How are you doing today?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12 4:50pm
In reply to @ivanthegsp "I can relate. I am battling cervical cancer at Mayo Rochester. I am a VP at..." + (show)
@ivanthegsp

I can relate. I am battling cervical cancer at Mayo Rochester. I am a VP at a large company and only told the need to knows. It’s turned my world upside down. I am staying in Rochester during the week for treatments and home on the weekends. You’re not alone. I was in Menopause and the clinic kept telling me my bleeding was hormone related. When my gut told me to go in, it was cancer.

Jump to this post

Welcome, @ivanthegsp. There are several members talking about cervical cancer in the group. I'd like to connect you with the most relevant discussions and members. May I ask, what stage is your cancer? Are you currently getting radiation treatment? How is it going?

REPLY
msfarn | @msfarn | Feb 13 10:55am
In reply to @kristinfloyd "@naturegirl5 Thank you for asking. I also perceive it as moving fast, so thank you for..." + (show)
@kristinfloyd

@naturegirl5 Thank you for asking. I also perceive it as moving fast, so thank you for saying that. Fast, yet I want Friday to hurry up and get here. Anything that brings me closer to getting this cancer out of me. My Gyn/Onc called me again last evening, she had spoken to the Hematologist who was treating me prior for my blood clots. They both agreed that I should go back on Eliquis since clots are more common for cancer patients. So today, i started that again. I do not have a problem with it, but worry that I might bleed again. (I have been free from bleeding for about a week) . I also told her I would like to know the chemo she is thinking, and she told me, it is what I expected. I also asked about a port. She told me not to let that be a barrier, that I am young enough to just have regular IV if needed, in order to begin quickly. (I am not sure I mentioned, I am 53). Most days I am ok. I am still working, and feel relatively "normal". My sleep is not optimal, but not horrible. So my work is a great distraction. I also have a couple of friends that are helpful, and they are coming by thursday to help me organize my craft room. I told them I want order in at least one area of my life. So, overall, I would say I am doing well day to day. I like the Optimism with a plan concept. I have also been trying to replace worry with prayer. Every time a worry or negative thought comes to mind, I turn to prayer. I will lean on all of you. Thank you so much.

Jump to this post

Hello, I’m 62 diagnosed ovarian cancer in July 2023. I asked some of the same questions at the beginning of my treatment and several advised me to go ahead and get the port because you will probably get it anyway before the end. My port has been great-no problems. Just finished treatment on Friday. I sent you a private message just in case you want to talk more. I will be happy to share my experience. I’m at Mayo Florida.

REPLY
dj12 | @dj12 | Feb 13 3:34pm
In reply to @val64 "Sorry to hear that you are going through this. I found that the situation became less..." + (show)
@val64

Sorry to hear that you are going through this. I found that the situation became less stressful after there was a plan in place, and I just had to show up and do it.

Regarding the chest port, I had two rounds of chemo through veins in my arms before I had a port implanted (I was 57). That was one round too many. The first round went fine, but chemo messes up your veins, so during the second round, they kept trying to stick needles in different places to start with, and then moved the needle into different veins twice during the infusion. Ugh. Starting chemo ASAP is probably good, even without a port, but I would recommend getting a port before the second round.

Jump to this post

Yes, I highly recommend a port. Had 5 chemos and the IV nurse asked why I didn't have a port. I told her my oncologist never told me about it.
I also had vein damage in my hand. So much easier with a port!!!

REPLY
irishgirl1313 | @irishgirl1313 | Feb 13 8:19pm
In reply to @colleenyoung "@irishgirl1313, such an encouraging first post. I look forward to learning more about you. Were you..." + (show)
@colleenyoung

@irishgirl1313, such an encouraging first post. I look forward to learning more about you. Were you also diagnosed with ovarian cancer? What treatments have you had? How are you doing today?

Jump to this post

Mine was endometrial but both my grandmother and great grandmother had ovarian cancer so I had the full hysterectomy (ovaries too) as part of the treatment plan. I am doing well 18 months out but I also have a genetic abnormality so regular scans and evaluations are part of my new normal.

REPLY
paisleybandit | @kristinfloyd | Mar 1 1:41pm
In reply to @colleenyoung "@kristinfloyd, just thought I'd check in. How did things go on Friday? How are you doing?" + (show)
@colleenyoung

@kristinfloyd, just thought I'd check in. How did things go on Friday? How are you doing?

Jump to this post

Thank you for checking in. I had my first treatment on 2/15. Things went relatively well. I am preparing for my next treatment coming up on 3/7. I did end up with a yucky rash on Day 11, that required a visit to Urgent care for Cancer patients, and got meds to treat it. I am so much better now. It was painful, hot and itchy. It surprised me to be on Day 11. I am very pleased with my medical oncologist and surgeon team, feel like I am in good hands. I also had my head shaved yesterday, and even though I thought I was going to be Ok with it, it hit me like I was not expecting, somehow feel less feminine, and just like a part of me is gone. I met with a friend for breakfast today, and she really brightened my day. Allowing myself to feel the feelings, and trying not to get stuck in them.
I feel well overall. Thank you again for checking back.

REPLY
ladawny1 | @ladawny1 | Mar 30 1:09pm
In reply to @kristinfloyd "@naturegirl5 Thank you for asking. I also perceive it as moving fast, so thank you for..." + (show)
@kristinfloyd

@naturegirl5 Thank you for asking. I also perceive it as moving fast, so thank you for saying that. Fast, yet I want Friday to hurry up and get here. Anything that brings me closer to getting this cancer out of me. My Gyn/Onc called me again last evening, she had spoken to the Hematologist who was treating me prior for my blood clots. They both agreed that I should go back on Eliquis since clots are more common for cancer patients. So today, i started that again. I do not have a problem with it, but worry that I might bleed again. (I have been free from bleeding for about a week) . I also told her I would like to know the chemo she is thinking, and she told me, it is what I expected. I also asked about a port. She told me not to let that be a barrier, that I am young enough to just have regular IV if needed, in order to begin quickly. (I am not sure I mentioned, I am 53). Most days I am ok. I am still working, and feel relatively "normal". My sleep is not optimal, but not horrible. So my work is a great distraction. I also have a couple of friends that are helpful, and they are coming by thursday to help me organize my craft room. I told them I want order in at least one area of my life. So, overall, I would say I am doing well day to day. I like the Optimism with a plan concept. I have also been trying to replace worry with prayer. Every time a worry or negative thought comes to mind, I turn to prayer. I will lean on all of you. Thank you so much.

Jump to this post

I am glad I found this support thread. I am also almost 53, may. Not sure where I am at yet. Went to the ER last Friday, a week ago for nausea and chest tightness. Dr came out to tell me I had a positive pregnancy test, hcg, abnormal blood work, and i had a partial hysterectomy 3 yrs ago. Mentioned that I had something serious in my reproductive system. Dr notes said follow up for ovarian pathology and malignancy. Told me to get a fire under my butt and be seen in 2 days, well being a friday and not having a pcp yet, I spent all day doing just that. Got a gyn/onc willing to take me without referral. Been a week and still no appt. This waiting is killing me, not knowing what is going on. Current symptoms are feeling full quickly, bloating, constipation, some nausea, and a pressure in my lower pelvic region. Any thoughts on this anyone. Im scared and very anxious and tired of waiting for an appt. Much much love to all who have been diagnosed and receiving treatment for all cancers.

REPLY
1 reply
val64 | @val64 | Mar 30 2:20pm
In reply to @ladawny1 "I am glad I found this support thread. I am also almost 53, may. Not sure..." + (show)
@ladawny1

I am glad I found this support thread. I am also almost 53, may. Not sure where I am at yet. Went to the ER last Friday, a week ago for nausea and chest tightness. Dr came out to tell me I had a positive pregnancy test, hcg, abnormal blood work, and i had a partial hysterectomy 3 yrs ago. Mentioned that I had something serious in my reproductive system. Dr notes said follow up for ovarian pathology and malignancy. Told me to get a fire under my butt and be seen in 2 days, well being a friday and not having a pcp yet, I spent all day doing just that. Got a gyn/onc willing to take me without referral. Been a week and still no appt. This waiting is killing me, not knowing what is going on. Current symptoms are feeling full quickly, bloating, constipation, some nausea, and a pressure in my lower pelvic region. Any thoughts on this anyone. Im scared and very anxious and tired of waiting for an appt. Much much love to all who have been diagnosed and receiving treatment for all cancers.

Jump to this post

I'm so sorry you're going through this. The worst part of this whole experience is what's happening to you now: they say you probably have cancer, you're shocked and upset, but then you have to struggle to get an appointment to find out what's actually going on.

I don't know how many health systems take your insurance, but it might be worth calling all of them, both to get a PCP and a gyn oncologist ASAP. Did they do a CT scan at the ER?

When I suspected I had a problem, I called one of the local hospital systems and asked for the soonest available appointment with someone in internal or family medicine (and covered by my insurance). They gave me an appointment with a 2nd year resident the next day. The resident girl wasn't the most knowledgeable doctor I ever met, but that doesn't really matter. She would make referrals when I asked, so I made her my PCP. The most important referral she gave me was for a transvaginal ultrasound. The result of that eventually got me an appointment with a gyn oncologist. But the whole process took way too long for my taste.

Good luck, be pushy, and let us know what happens.

REPLY
debrajean674 | @debrajean674 | Mar 30 9:26pm

I was 27yrs old when I got my cancer ovarian cancer. you will get threw.. your going feel not so good but you I have talk about it.. it's hard in the beginning but it helps.. every one different. but if want talk just message .. I am 59 yrs now it late stage but made. it..

REPLY
lathomasmd | @lathomasmd | Mar 31 9:38am

Most of us cancer patients know all too well how frustrating our American healthcare system is. At this point, when you don’t have enough answers, the best advice I can think of is “Be the squeaky wheel” (as in “the squeaky wheel gets the grease.”) Call each one of your leads every day. Call only once a day, but call EVERY day. Especially if they tell you they’ll call you—don’t count on it! Call every day, ask whether there are any cancellations that day, or any other concerns you’re working on. Good luck and keep us posted.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.