r/endometrialcancer • u/Ready-Sherbet-2741 • 20d ago
Newly diagnosed high grade serous carcinoma
I am now waiting for scan results to check spread. The stats on this cancer are terrible. I am 56 years old.
My symptom journey started with mild but persistent pelvic pain. Also started having changes in BMs. More D. Also, worsening insomnia. After a few weeks, I went to doctor and ultrasound showed 6mm lining but otherwise normal. Spotted blood with a BM then GP ordered a CT scan. Normal. Did a Pap smear also normal. A few weeks later a big bleed and went to ED. Then I was referred for a biopsy. I opted to go D&C/Hysteroscopy which happened last Wednesday. Gyno told me it looked like cancer after I woke up. Pathology confirmed the cancer.
Now a lot of crying and anxiety that is uncontrollable. Facing mortality with chronic insomnia is just bad. I share my home with my wonderful brother and one of my adult children still lives with me. I was widowed at 35 so my little family is everything. I am so upset that my children face losing their remaining parent. my adult child who lives at home is my best buddy.
I am being referred to the Gynaecology oncology team at my local hospital next week. Any tips for coping? Does anyone know why the cancer causes insomnia? medication?
10
u/Glittering_Hurry236 20d ago
We've all been here. The early days are the absolute worst.
I was becoming hysterical constantly after diagnosis and could not function. I had a baby a few months before I turned 43 and could not believe 10 years later I could be leaving my child without a mother, and I don't know it just never occurred to me that I could get cancer, how stupid of me - but it's really what I thought...
I saw myself living to 100 in good health because I was fit and healthy and knock on wood. Nothing had ever happened to me before.
So. This was a shock. I went to my GP and bless her heart I was SO hysterical and shaking and asked for Valium and she gave me a years worth.
I'm 14 months postop and barely need it now; but I certainly needed it in the early days.
The cancer doesn't cause insomnia as far as I know but hormones do -- and loss of them which at our happens to all of us.
So, you can ask your doctor for an anti-anxiety, especially with your insomnia. For insomnia, I would say physically exhaust yourself with exercise and take Benadryl or whatever you have to do to fall asleep, especially now.
The early days pre surgery you're in right now is the worst, even if you find out, God forbid your stage three you will at least know the plan and you will have support thru your cancer center and a plan.
Endometrial cancer has a high cure rate. You have every reason to believe you will be cured. It might look gnarly. The hysterectomy absolutely sucks - losing your ovaries absolutely sucks. Becoming Postmenopausal overnight absolutely sucks. I was 53 and not menopausal before my hysterectomy.
You might need chemo, you might not you might cold cap while you do chemo and not lose your hair; you might do radiation and you might not, but you will very soon get this hysterectomy done and get your staging done.
You might only need the hysterectomy and that will be it and you'll get checked every three months for 2 to 5 years. And that's the best case scenario for endometrial cancer.
You have every reason to believe you will be cured and become a survivor.
5
u/mandasee 20d ago
Lots of good advice but if it’s actually serous, more than a hysterectomy is always needed. It’s very different than other types of endometrial cancer.
3
u/Glittering_Hurry236 20d ago edited 20d ago
Yup. OP will have to wait and see with more information. So far it's just confirmed cancer. Hopefully it's not aggressive and maybe OP can find out Figo score.
I knew Figo score and what type after my polypectomy, DNC during the operative hysteroscopy.
4
u/CABB2020 20d ago
serous is always grade 3, so as the redditor above said, there is always more than a hysterectomy. op already knows it's serous, so, she isn't waiting to find that out.
3
u/Glittering_Hurry236 20d ago
Yes OP and I chatted below. I didn't know serous was always Grade 3. Hopefully she caught it early and can get a plan going. The waiting to stage and not knowing is the toughest mental place.
3
u/Ready-Sherbet-2741 20d ago
Thanks for that. My serous carcinoma is difficult to cure. It’s more of a management thing according to my reading. Late stages 3 or 4 the prognosis for 5 years is dismal (according to a scientific paper I read). I can only cross bridges when I get to them.
I will definitely look Into anti-anxiety medication. I’m currently taking paracetamol but this is not doing a great deal! It does help with some of the panic and shaking.
I am so glad you are a survivor. I live in hope.
6
u/inquiring_mind_1 20d ago
I have same diagnosis (2021) and I know it’s hard to manage thoughts and emotions in the early days, but what you said “I can only cross bridges when I get to them” is great advice. Also, prayer and leaning/trusting in God was my greatest comfort.
2
u/Ready-Sherbet-2741 20d ago
Thanks for that. When I was working I used to give the crossing bridges advice to everyone - now I am taking my own advice! I don’t believe in any higher powers/Gods but I am so glad you get comfort from that.
6
u/Alienspacedolphin 20d ago
You never know. (I got stupidly, ridiculously lucky in how early they caught my mixed serous- two years ago at 51. Zero risk factors. The scan looked like maybe there was omental involvement, but no. Apparently they got it all with the D&C? I’m fine now. Life is good and I don’t take anything for granted. I’m just happy to be here. )
The weeks before surgery sucked so bad. I’m a statistician and have an MD (don’t practice clinically) so of course i looked things up. I had to tell my teens, who lost their dad to AML.
To sleep? I went for 10+ mile runs most days and drank more wine than was probably good for me. Do whatever you need to.
I’m a statistician- Ignore the stats. Treatments are advancing so quickly today that by the time they are published they are applicable anymore. My first husband had a cell type with an absolute shit prognosis, and lived almost 2 years past his second transplant failure. At that time he supposedly had just a few weeks. (He kept going, because new drug trials kept coming out, most of which are approved and standard)
Statistics are useful only so far as they help docs determine what treatments are better on average than others for most people. No stat ever will tell you what will happen to you. You already ‘broke’ the odds by getting a rare type, so there no reason at all that you might not be that person like me who gets stupid lucky, or that responds exceptionally well to treatment. Miracles are really very common- they happen to someone every day.
I wish the best for you.
3
u/Ready-Sherbet-2741 20d ago
Thanks for your wonderful comments. Explaining it to the kids was awful. They lost their father already. But they both assured me that they will be Ok but I’m not dead yet so will just face it as needed. Kids are amazing when they have already lost someone.
I am exercising twice a day, meditating but will also get medicated if only to get through the start.
thanks for your best wishes. I intend to keep everyone updated.
3
u/Glittering_Hurry236 20d ago edited 20d ago
Oh no I didn't see serous in your post! I'm so sorry.
Cross these treatment bridges as you get to them.
We have several women here going strong with serous - it will be a battle - and you will persevere. I have no doubt.
Valium was a God send. I've taken it before for dental appointments so I know it works.
Google is not our friend after a cancer diagnosis. Try not to google and focus on getting ready for your surgery. Planning meals and prepping them, I spent the days before surgery organizing everything I needed at shoulder height because I knew I couldn't bend down for six weeks, making meals and freezing some, loading up Netflix and Hulu with seasons and seasons of shows I would binge on the couch. I got peppermint tea and MiraLAX and Colace and a giant round donut pillow to sleep in so I wouldn't sleep on my sides, which was impossible for two months anyway. And I just kept as busy as possible and the days before surgery. I had six weeks from diagnosis to surgery day, and as the days grew closer to the hysterectomy, I would become more and more hysterical.
3
u/Good_Vast4993 20d ago
Yes, I have serous too and I know that there are women here who are doing okay with it I hope some of them weigh in here!
2
u/Glittering_Hurry236 20d ago
I hope you are doing well 🧡🧡
3
u/Good_Vast4993 20d ago
Thanks! I completed chemo and am on Herceptin now. It’s early in my journey but so far NED. !
2
u/Glittering_Hurry236 19d ago
Heck yea!!!!! NED 🧡🧡
Now let's both stay that way 🙏🏻
3
u/Good_Vast4993 19d ago
I’ll drink to that! Green tea of course! ❤️
2
u/Glittering_Hurry236 19d ago
🫖 yesss!! I'll have a smooth move tea thank you. I got hooked on it after the hysterectomy, lol!!😂
1
u/Ready-Sherbet-2741 19d ago
This gives me some hope. thanks. Congratulations on being NED! May I ask for a bit more detail on your journey?
3
u/Good_Vast4993 19d ago
Sure. My journey was officially launched in September of last year with a positive biopsy for serous. I regret that my docs missed opportunities to catch it earlier (trans vaginal ultrasound several months earlier was normal) but I need to look forward and not backwards. After surgery in October, I started chemo in Nov. six cycles of carbo/taxol plus Herceptin, I am HER2 positive and Herceptin has been found to be beneficial for this subset of serous. I continued Herceptin after I finished chemo in February and was informed I was NED in March. I expect to be on herceptin for at least one year. Make sure you ask your doc to test for HER2 and other markers. Some hospitals do this routinely now but I’ve also heard of women who haven’t had this done. I know serous is a difficult diagnosis but I find hope in reading about women who have been NED for many years after their front line treatment, immunotherapy has been a big help in the treatment of this cancer. I am 3c which is considered advanced disease but my doc is still hopeful (as I am) Take one day at a time and don’t get freaked out by what you read.
1
u/Ready-Sherbet-2741 19d ago
thanks. Same thing happened with me on initial scans. Only got diagnosed when I had a biopsy. I should have gone straight to biopsy. I will definitely test for HER2 thanks for the tip.
2
2
u/Ready-Sherbet-2741 20d ago
incredibly useful. thank you so much. I have my little family to help. They we will be with me all the way.
How often did you take Valium?
The amount of panic I am in is unbelievable. I think of people going through this and we all go through so much.
2
u/Glittering_Hurry236 20d ago
I got 10 mgs of diazepam (generic Valium) and I needed it only at night. I'd break it in half for a 5 mg dose so I could sleep. And used it in 1/4th's during the day if I needed it. I rarely used it during the day - but I did some days.
That's what these medications are for. I've been using benzodiazepines (Valium) for flights and dental appointments for 30 years. I'm not addicted to them and I use them as needed basis. I would say that a cancer diagnosis is a needed basis.
I still have some medical anxiety left. So I use I'll say 1/8th of a pill randomly at night when I get on a what if loop ..
I had skin cancer removed from my forehead, 2 1/2 months after the hysterectomy and it was not melanoma thank goodness it was basal cell, but it was on my forehead and left a silver dollar size hole in my forehead that took a very long time to heal after Moh's surgery to remove it.
And it was just one thing after the other last year and my nerves were completely an absolutely shot.
2
u/Ready-Sherbet-2741 20d ago
skin cancer - it really is one thing after another. I insist on a Valium for the dentist and it works a treat. I’m going to use as needed.
your comments were a big help. I feel like if I can manage the panic and the insomnia I have some hope of managing cancer.
2
u/Glittering_Hurry236 20d ago
Yes. You will manage the cancer. We have several serous here. It's definitely more harsh than endometriod carcinoma but you catch endometrial carcinoma too late. That's a disaster.
We all caught it when we caught it and just get thru the surgery then post op life begins ..
Since you know Valium you know it will work. Your nerves are shot right now due to the diagnosis and you need to sleep to cope and heal.
I'm glad you have your little family to surround you at this time and they will be a huge help 🧡
3
u/Ready-Sherbet-2741 20d ago
Yes. Just yes. Being sick with cancer is like moving to a different dimension. The rules have to change. and it’s so useful for wonderful people like you to just tell me how it is. ❤️
5
u/Aware-Locksmith-7313 20d ago
Also remember that path report from a D&C may differ from post-op path report of entire surgical specimen. My serous/clear cell mix at D&C became 100% pure uterine clear cell post TAH-BSO. … I declined recommended standard of care Taxol/Carbo chemo (no radiation ever mentioned) in favor of quarterly surveillance. Now happily 48 months out NED.
2
u/Ready-Sherbet-2741 20d ago
I will remember that. This gives me some hope. wonderful that you are NED.
5
u/Aware-Locksmith-7313 20d ago
Might add that I’ve never felt better! Best to you .
3
u/Ready-Sherbet-2741 20d ago
thanks. and you too. I love that you feel great. I remember when my partner died it was bad for a long while but then when you get through the horrible grief you really do appreciate life. maybe cancer will be similar. with cancer I’m hoping to try and find some joy when I can.
3
u/StockButterfly8080 20d ago
The beginning of my symptoms similiar to yours. I thought I had an UTI as I have lupus as well. went to Dr and had blood/urine/swabs, all normal. Then all symptoms disappeared. 2 weeks later back again. Pelvic pain so bad I couldn't walk. Onto biopsy and then 2 weeks later got a phone call. An oncologist who told me it was Mesonephric Like Adenocarcinoma. She'd never treated it before so they were going to 'try' radiation. Had my first week and all good. I have always had bad sleeping so Dr prescribed a light anti depressant that I take around 8pm. I sleep really well. Still wake up sometimes in middle of night but overall I am sleep a lot better. I've made a decision to not fear it. I'm really glad you have a lovely family to support you. Don't forget you can talk to the nurses at your hospital and ask any questions or concerns you have.
2
u/Ready-Sherbet-2741 20d ago
Great comments - thanks. May I ask which anti-depressant? Lack of sleep is my kryptonite currently.
I really like the idea of not fearing it. When I think about it logically fear does not help - it is like guilt completely pointless. But logic and my brain in panic are two different things!
the tip on talking to nurses is great. hopefully I’ll get to see the oncologist very soon.
Hope the radiation does the trick.
3
u/no-user-names- 20d ago
“Fear doesn’t help”, no it doesn’t, but it’s TOTALLY understandable. And panic too. BUT try to use the fear and panic energy positively to motivate yourself to get in the best possible state of fitness before surgery (core muscles, pelvic floor, heart and lung health). That’ll make recovery from hysterectomy so much easier.
And motivate yourself to be the outlier. There’s a book based on research, not woo woo (although a little woo woo has slipped through from her interviewees!) called Radical Remission. People dismissed from the health service with untreatable stage 4 cancers who have been told to go home and live their best life for as long as possible. Then they became NED.
The book lists the things they all had in common that they did. There are 10, and her latest research has just added another - exercise. (Radical Remission by Kelly A Turner)
3
u/Ready-Sherbet-2741 20d ago
I will have a look at that. I’ve upped my exercise to manage stress so hopefully that will help.
2
u/blue-violet- 20d ago
I’m so sorry you are facing this diagnosis and am wishing you all the best.
Maybe check into cyclobenzaprine, which is a mild muscle relaxer. I take only 5mg before bed. It helps me sleep and even greatly lessens the jaw clenching I do all day and night. (This predates my cancer and hysterectomy.) If I take the full 10 mg dose I’m still very groggy after 8 hours sleep.
Sending you good thoughts.
2
2
u/StockButterfly8080 20d ago
I'm in Australia, not sure of which country you are in and/or if meds are the same. Mine is called Loxalate 10mg. I was anxious too and not sleeping well at first. It's a lot to process so take your time. Thank you for your kind comments. A lot of good people on here too. I wish you well.
2
u/Ready-Sherbet-2741 20d ago
Also in Australia. Thanks for the drug name. Have decided to whatever necessary to keep panic under control so I can manage. Thanks for your best wishes and to you too.
5
u/josiern1 20d ago
Hi- I was diagnosed with high grade stage 4B endometrial cancer that had spread sorry throughout my abdomen and to my colon. That was three years ago and I’m doing fine now. Of course you never know when it might come back but honestly after this period of time, I don’t think about it much at all. You just never know what’s gonna happen. And although the statistics don’t look good, they’re just a range and you never know when you’re going to be the one on the high side of that range.
3
1
u/Ready-Sherbet-2741 19d ago
Thanks for sharing this. I’m waiting for scan results and of course I am worried it has spread. Did you have to do chemo first before surgery?
I love the fact you are now doing well and it is all in the background!
2
u/josiern1 19d ago
I had the option to do three rounds of chemo then surgery then three rounds of chemo or have surgery first and do six rounds of chemo. I tried to do the three rounds and then surgery and then three rounds but on the first day of chemo I had a couple different bad reactions that sent me to the emergency room instead. So I decided to do the surgery first so we could get moving and then I had my chemo. Then, in the meantime, we got my allergies either under control or switch ed to different meds.
1
u/Ready-Sherbet-2741 19d ago
A lot to go through. It gives me hope because you managed to get through it all. I remain astonished about how everyone manages. such a tough bunch of people. any tips on coping would be appreciated. Thanks so much for being here.
2
u/Good_Vast4993 20d ago
By the way, there is a Facebook group called UPSC uterine papillary serous carcinoma. Lots of good support and advice.
1
1
u/Ready-Sherbet-2741 18d ago
update: scan revealed no apparent Mets. Now waiting to see oncologist at hospital. Still shattered - got a script for an SSRI. Thanks to everyone for their comments. ❤️
2
u/SnooRadishes8956 18d ago
Uterine cancer survivor here, 53F. I had a total laproscopic hysterectomy last year, everything taken out, minimal discomfort, in hospital 1 day, cancer gone! I hope it goes the same for you. It's not anything automatic death sentence.
11
u/mcmurrml 20d ago
Hold on a minute. This cancer doesn't mean you are going anywhere. I know it is scary hearing it. Hopefully you will get more info on staging and treatment next week.