Recently Diagnosed and Adjusting

jcf0513

I was diagnosed with endometrial cancer on July 2nd. Had radical hysterectomy on July 18th. They thought it was going to be a simple day procedure but discovered that cancer had spread to a lymph node which they couldn’t removed because it was too close to a major blood vessel. I ended up staying a night in the hospital. Afterwards the doctor still seems optimistic that it is treatable even at the advanced stage. And I am hanging on that hope. She couldn’t give me specifics until the pathology report comes back and I have an appointment to go over it on Tuesday, July 30.

So far I am doing a good job of staying in the moment, trying to heal from surgery, and not let my mind wander to all the fears and what ifs until I know what the plan is, but a call from my regular gynecologist this afternoon kind of cemented it into reality a little more than I was ready for. She was calling to “check in” after receiving the report from my gyn oncologist about the cancer spread, and it made me feel so awful that I spiraled afterwards. Luckily I have a good support system and I was able to talk it through with someone, but I still feel like the hope I had been clenching to had been shattered. She made me feel I wasn’t being realistic enough, and that instead of sitting on the couch calmly playing some phone game, I should be taking everything in my life so much more seriously cause I have a death sentence on me. It was pretty devastating. How do others manage being caught off guard with the reality of their cancer? Will I ever get used to it?

Another element is that I am a single mom, and sole provider for myself and my daughter who is in her junior year of college. I work for myself, and have a pretty demanding job. I am really worried about being able to keep up with work and provide for us both during treatments. I am trying not to get too far ahead, to take everything one day at a time and make adjustments as needed, but I am feeling pretty lost right now. I am worried about feeling sick all the time once treatment begins. I am also worried about looking sick, losing my hair, and all the other scary things that come with chemo/radiation therapy and might interfere with my daily life. Have others been able to work during treatment? And how does one manage the roller coast of emotions that comes with this all?

NoTimeForCancer

hey jcf0513, I am sorry to hear what has been going on, let's try to take a breath.

I am glad you are working with a gyn onc. That is why you want one, because they have the additional training a reg gyn does not have. However, there is a lot not known yet. You really need the full report to know what you are dealing with and what the plan is the gyn onc is building. I would recommend you ask the gyn onc's office if they did (or are planning on doing) genetic testing on your cancer. Some gyn cancers are very responsive to the newer immuenotherapy drugs because of dMMR, p53, POLE, etc. This is important.

I was able to work during treatment (I had an office job), with a few exceptions. During chemo, that day was pretty much that - a day of treatment (tx). I guess you can work if it is computer related. The few days after each chemo make you very suscepticle to infection, so you just have to be careful. "Chemo brain" is real, and it made me mad. I learned to keep a note pad and pen ready to jot things down so I could remember what I was going to say or remember what I wanted to ask - but it does get better. Everyone reacts differently to chemo, but for the most part what I have read here, the other women have been able to adjust. I think you need to be kinder to yourself, but you can do it. While we all say it is "doable", that doesn't mean much until you are living it.

If possible, see if there is a dietician you can talk to. How can you best help yourself in the process. Chemo is constipating so you will have to figure out the Miralax schedule, and make sure the plan has you stepping down on your steroids after each tx. There are good nausua drugs and that will help with issues there.

I don't mean to scare you, you seem pretty sensible with all you do and have done. You are a statistic of one, and you are going to have to be your own advocate.

jcf0513

Thank you, NoTimeForCancer. I appreciate your perspective and advice.

Hofamer2000

Hello jcf0513,

I am new here and decided to join. I was diagnosed on July 25 with urethral cancer. Shocked and still trying to figure it out. It's been a whirlwind since July 6th. I get my port on Friday and my first treatment on Tuesday the 6th. I too am planning ahead with who will help me through this 18-week process which was another shocker. I'm single so have family and friends who will be my support. I can't wear my sister out so I'm thinking of rotating shifts weekly. Your post and NoTimeForCancer post is very helpful. I have little words right now because this whole process is terrifying.

NoTimeForCancer

jcf0513, it is ok to be terrified, it is scary. I had to look up urethral cancer to see if I thought what it was - was. I am sure it is even more difficult to find others with your type of cancer which makes it harder.

Well dear. You are welcome here.

I am not familiar with your cancer, and I am sure you are learning about it as well. You said it is and 18-week process? I think that might be 6 chemos with three weeks between each treatment (tx)? If you don't mind, can you tell us what kind of chemo you will be getting if you know? Hopefully you can do a search using that little magnifying glass at the top to find out tips on chemo.

Please to try to take a breath. Hugs dear.

Hofamer2000

Thank you NoTimeForCancer. It will be weekly treatments the first infusion will include Taxol, Carboplatin, and Jemipli. Then every 3 weeks I will get Jemipli.

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1717083#Comment_1717083

Good luck this week, Hofamer2000.

BTW, I was single going through it all and didn't have any family around. I know my sisters would have loved to have helped me, and I would have loved it too.

Be kind to yourself.

MJS19

I was able to work full time throughout chemotherapy, something I could not have done if my job were physically demanding. Although I struggled with pretty severe peripheral neuropathy, I was not sick. It wasn't until that six-treatment chemo course was almost over that I started feeling weak due to low red blood cells. Everyone is different, but that first course of chemo five years ago was nowhere near as hard as I feared it would be. My real difficulty was dealing with the shock of the diagnosis and coming to terms with mortality. I am so sorry that your gyn frightened you and made you more afraid. If it helps you to process what has happened/is happening, your gyn/oncologist can explain to you that there has never been a better time to be diagnosed with a gynecological cancer, as research and new treatments are exploding.

Losing your hair will stink; at least it did for me. I almost didn't do chemo. A process called "cold capping" helps limit hair ivloss for some women. You care team should be able to explain how it works and discuss your options with you. It didn't work for me, and it was uncomfortable and expensive, but I am not sorry I tried it.

There is a lot of good advice contained in new and old posts to this discussion board. The only thing I can add — which lots of others have said — is that many people are going to want to help you in ways large and small. My advice is to let them. People who love you, and people who barely know you, will offer help that you may not even know you need. They will feel better by doing something, and you will likely feel better by allowing them to.

Good luck.

jan9wils

https://csn.cancer.org/discussion/328313/recently-diagnosed-and-adjusting

I was teaching first grade the first time I had chemotherapy with paclitaxel and cisplatin. Teaching first grade is physically and mentally demanding. I did lose my hair and sometimes wore a wig to school but often wore head scarves as they were more comfortable for me. I had two teacher friends, (one who had retired the year before) who helped take me to and from the hospital for my infusions. I did have neutropenia and was given a device on my belly that would inject 3 days after chemo so I wouldn't have to make the 40 mile drive back to the hospital to get the injection. I needed to take two days off, every three weeks for treatment on Thursdays and then would have Friday and the weekend to recover before returning to the classroom. Somewhere around my third treatment I started to panic a little wondering if I was doing all of this just to wind up dead in a couple of years anyway. That was 8 years ago! I posted recently about my newest recurrence. I'll repeat here what I said, If you didn't know me, you wouldn't know I have cancer. I hate that your gynocologist scared you. Cancer is a chronic disease that is sometimes curable and sometimes not but it is not a death sentence. I wish for you hope and comfort, support and love as you journey through this chapter of your life.

Jan

Ti6na

Hi jcf0513,

I am right there with you. I went into the ER in June for what my gyn thought was a burst cyst and ended up in the hospital for 3 weeks as they tried to figure out what what was going on. Went through a lot of "it might be cancer," "actually, it might not be cancer, " and then " oh wait, it is stage 3 cancer." As I'm sure you know, it's been exhausting, physically and emotionally. I was diagnosed around the same time as you and still going through the ups and downs of it all. I will say it does feel very confusing to have some people (including doctors) address it more casually and others more seriously. As hard as it is, I'm trying to ignore all of that and focus on one step at a time (which it sounds like you're trying too). I just started chemo last week and it wasn't as bad for me as a I thought it would be. I decided not to do the cold capping but I did get the cold mittens/booties which I used during the Taxol treatment. I think they've helped minimize the neuropathy (tingling/burning in fingers and toes). I'm also nervous about the losing my hair part, but we'll face that when we get there!

In terms of work, I'm on leave right now but am trying to figure out what I want to do. Luckily my job is very understanding and so I'm leaning towards taking more time for myself and maybe going back part-time soon.

I just joined this group and yours was the first post I read, so thank you so much for sharing. We're all on this rollercoaster together.

jcf0513

Thank you all for the support. I haven't been on this forum for a while since I have been dealing with daily management of the diagnosis and treatment, and the emotions that go with it all, but now I wish I would have checked in a little more to see all of the support that is out there.

Quick update: My final diagnosis took a long time to get. The pathology report showed no cancer outside the uterus, but didn't have any tissue taken from the enlarged lymph node. I think my gyn/oncologist just assumed it was all cancerous from the look of it and thought it would be clear in the pathology report. So further testing was needed to see if cancer was in the lymph nodes. As a result, I was scheduled for a PET scan in August, that showed 4 lymph nodes were "hot". Then a biopsy in September to confirm cancer was in the lymph nodes, which it was. I was finally diagnosed with Stage IIIC2 Endometrial Cancer at the end of September.

Treatment started the middle of October. I was prescribed 6 rounds, every three weeks of chemo/immunotherapy. The chemo drugs are Carboplatin and Paclitaxel. The immunotherapy drug is Pembrolizumab. I was terrified for the first treatment, but overall, the symptoms were pretty manageable. I felt queasiness and an overall yuck feeling for the first 5 or 6 days, and then pretty okay after that. They had me on some antinausea meds that caused a lot of brain fog, but I found out in my follow up appointment that those were only prescribed as a last resort if the other meds didn't work, so I didn't have to take them if I didn't want to. I didn't take them after the second round of chemo, and I didn't have as much brain fog which was a blessing. The neuropathy lasted a little longer, and I ended up with a rash all over my body around the second week. Hair loss began around that time as well, which was a huge challenge emotionally. But overall, I felt much better than what I expected or feared. I have also been able to work during chemo, which I am thankful for. My job is computer based so I don't know if that would be the case if I was doing physical labor. I work for myself, so I am able to shift my hours or work from home when necessary. And I take it pretty easy, on treatment weeks.

In July, after being diagnosed, I completely changed my diet, eliminating sugars and processed foods. I wanted to give my body the best odds at fighting the cancer. My diet now is primary plant based with lean meats for protein. I also began walking daily, increasing my distance over the last several months. As a result, I have lost a lot of extra weight. I don't know if that has helped with this process and the symptoms of chemo, but I don't think it hurts. In a lot of ways, I feel healthier now than I did before my diagnosis.

I have one more treatment scheduled and then the midway CAT scan to see if it is all working. There is talk of radiation, if it isn't. Right now, that is the scary part, but I just keep focusing on the chemo doing its job. Positive thinking never hurts.

I hope all is going well for the rest of you on this journey.

NoTimeForCancer

jcf0513, thank you for stopping back and letting us know how it is going. It IS a lot, and it sounds like you have found a good way for you to work through things.

I don't think I could have done a "physical" job while going through chemo either, and was fortunate not to experience any nueropathy but didn't know what I didn't know then! Some women have iced their hands and feet and that seems to help. Since you are not done yet, if you dig around a little here you might find information or maybe one of them will post.

I think it is helpful to find someone who is going through, or has gone through it, and why this site it a good resource. Please let us know how it continues to go and if there is anything we can help answer for you.

didyouknow213

The unknown and waiting for diagnosis has always been the hardest part for me…here's my story:

Due to intense pelvic pain, I had an transvaginal ultrasound August 5th 2024 that showed a 3cm "complex cyst' on my right ovary. When I had an MRI done 3 weeks later, it showed this cyst had grown to 8.4cm - and it was now called a "mass." I was referred to a gynecological oncologist immediately - which scared me as I lost my mom to cancer in my 20s.

The gyn onc tested tumor markers (all were within normal range) & CT scan of my chest, abdomen, pelvis (all clear). In discussions and based on test results, neither of us really felt there was going to be a cancer diagnosis… On Sep. 23rd I had another transvaginal ultrasound that showed the "mass" was now 11.3cm…so very rapidly growing and surgery to remove the mass was scheduled right away.

I went in for surgery to remove my right ovary & fallopian tube, as well as the mass Sep. 25th - but at that time, we still did not know for certain if this mass was benign or cancerous. Unfortunately, post-surgery, the pathology report for the biopsy of the mass showed it was endometrioid type ovarian cancer. I was very lucky to catch this early (I was staged at Stage1-2). This diagnosis left me going thru all stages of grief; denial, anger, sadness, bargaining, and finally acceptance.

I am now scheduled to go back in for surgery in a few weeks for a total hysterectomy (I didn't need any fertility sparing) and complete lymph node extract with further biopsies of those removed organs + chemotherapy to follow. The decision to have this second surgery was made easier as I did complete genetic testing and found out I was positive for a genetic mutation associated with Lynch Syndrome - which put be at predisposed risk for colon, uterine, and ovarian cancer. While it was not great news, it did help explain how I may have gotten this cancer (as I am an extremely healthy 44 y/o Dietitian who eats well, exercises daily, sleeps deeply, and has a rich circle of friends and family)…I still find myself asking, "why me?!"

I will be going on a dual cocktail of Carboplatin and Paclitaxel…I was told my hair will all fall out…I'm not sure why that bothers me so much…but it just makes me feel like being a bald chemo patient will make me feel like I am sick…I've always prided myself on being so healthy and active - it's hard to see myself any other way. I stumbled on this chatroom and am glad that I did - could use the extra support right now. I'm really scared about the chemo - I mean I know I'm strong enough to survive it, but scared of the unknowns that it will cause in my body. I can't wait until I am on the other side of this…

NoTimeForCancer

hey didyouknow213, not sure I have had seen any of your posts before so let me formally say "hello".

It is all pretty overwhelming, so everything you are saying you are feeling is legit. "why", I think, is a question we all search for an answer, but know you are not alone.

I would suggest asking about lymphedema now. Lymph node removal can lead to this, and I thought I had a blood clot since my leg was swollen but found out after a doppler it was lymphedema. I now have, like many ladies, a collection of compression garments which I was properly fitted by a massage therapist who specialized in treating the build up of fluid. It is a possibility, so maybe ask what to look for, but if you are concerned know who to call to verify it is not a blood clot. I don't say that to scare you, I tell you so you are more prepared.

None of us fight alone, so hearing you have a wonderful support group surrounding you is fantastic.

P.S. I hated losing my hair too.