Im new to this forum although I have been reading your posts over recent days, which have been very encouraging, and given me some hope. I wasn’t expecting to read such positivity and positive outcomes. There is a but however . My diagnosis couldn’t be any worse. I’m stage 4 advanced, high grade ovarian /peritoneal, although they don’t know which, as one of my ovaries couldn’t be visualised on the scan. The other ovary has cysts.. I have omental caking, pleural effusion and enlarged lymph nodes. I was wondering if anyone else on the forum has had a similar diagnosis and can maybe give me some hope.
I was diagnosed in April and have had three rounds of carbo/taxol/avastin. I have a scan tomorrow.
Thank you all
Beaver54
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Beaver54
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Thank you so much for your swift response. I can’t tell you how happy that has made me to hear that. I know that everyone is different but there is hope. I am so pleased for you , thank you. xx
You are similar to me. My scan yesterday showed a good response to the same chemo regime as you. I am lined up for surgery tomorrow- salpingohysterectomy, omentum and whatever else can be seen that was too small to be detected by CT.
I have done what I can- nutrition, yoga, relaxation, counselling, walking, managing the pleural drain, and enjoying my friends and family. Now surrendering to the surgical team.
thank you F. You are all brilliant on here and I’m so glad I took the plunge to join. I’m struggling to ask the questions I want answering, from my clinical team as getting hold of someone is nigh on impossible. Plus it’s so much better to get first hand knowledge instead of statistics. I’m so grateful thank you.
It’s very quick from the results of your scan to surgery. Good luck with it and I hope you recover well. You’ve certainly prepared well for it. Chemo is knocking me about the first week in terms of no energy, but you’ve motivated me to move more.
I’m definitely having one more chemo before surgery but beyond that I don’t know as yet.
I had a hysterectomy in 1995 but they left my ovaries behind, so I expect they will be taken, and I’m assuming the omentum as well. It’s all guess work at the moment. Anyway, all the very best for tomorrow. I look forward to hearing from you soon to say how well the op went.
Yes, very similar diagnosis, i had ascites that had escaped my abdomwn to my lungs. Just I didn't have lymph node involvement at the outset and when I did it wasn't malignant.
6 chemo, debulking op and I was declared NED. Then 2 more chemo and Avastin as maintenance. There were days it was tough, but still lots of good times scattered through treatment. And here I am, NED for now. I've re-evaluated my choices and I'm enjoying life.
I know recurrence is probable, but many on here have positive outcomes and many lead a good life with cancer too.
Don't read Google, the statistics are not current, and you are not a statistic anyway!
thank you Morini. That’s really encouraging and I hope you continue to be NED for as long as possible and enjoying life to the full.
It’s interesting what you said about the Lymph nodes. I have made the assumption that they are malignant, although it doesn’t say that on the diagnosis. It just says enlarged. There are a quite a few affected. Do you know if the CT scan identifies malignancy or is that established during surgery? I’m so ignorant as I’ve been burying my head to a certain extent and never asked the right questions at my first appointment,
The CT does just show size. They can react and enlarge due to infection or inflammation. The pathologist will analyse the ones removed afterwards. Some can be removed and others deemed too risky ie near the aorta , to be taken out.
I wrote down my questions and those not answered during the consult I ask at the end. The specialist nurses can be phoned during normal working hours and they either have an answer or can find out. Knowledge is helpful to me but not everyone wants to know everything, it is individual.
I agree this forum is so very helpful and people are very generous with their time in replying. Thank you all.
Thank you F. Unfortunately my specialist nurse doesn’t get back to me despite me leaving several messages. I’ve given up now. I know she’s busy, being on her own and only working 3 days a week but it’s no good to me. I’ve rung the helpline a few times.
I have percardiac nodes, multiple pelvic paraaortic and bilateral inguinal nodes?!!, sounds as if they will leave them alone then !🙂. Enough about me now and thank you again for your help.
sorry, just a quickie. I misled you and then of course misled myself. The diagnosis was after a biopsy of the omentum, so they probably are malignant. I’m useless. My head is all over the place x
I think my lymph node experience is quite an uncommon one! Initially I didn't have anything going on with lymph nodes. An enlarged lymph node appeared in my chest during the first 3 sessions of chemo, it wasn't there at the outset. Everything else was responding well but this was still there, stubbornly unchanged, after 6 chemo. That's when it was biopsied and established to be a sarcoidlike reaction but not malignant.
I've found that if I can have times where I am not fretting it makes a huge difference to my life. But there are still times when the worry takes over still.x
Hi Beaver54, my diagnosis was almost exactly the same as yours, in October 2021. I was huge with ascites as well, and felt really really poorly. I had 6 rounds of chemo (carbo-taxol and some with avastin as well), with a total abdominal hysterectomy and omentectomy in between, and am now halfway through my maintenance regime - I am BRCA2 and so am eligible for olaparib with avastin as a maintenance treatment after chemo.I feel reasonably fit and well, having got used to a new normal, and am enjoying life and holidays! When I was first diagnosed I automatically thought the worst, but the ladies on here give me so much hope and I usually feel quite positive about everything - I intend to be here for many years to come yet!
I hope your chemo continues to go well, and good luck with your scan today 🤞 xx
Argh. I just typed a lengthy reply to you and lost it. I’m pretty useless at tech. Anyway thank you so much for your reply to me. I am encouraged by your positivity, like the other ladies on here, so I thank you for giving me hope. I have mixed feelings bout the BRACA as I have a daughter who is getting married on the 7the August. I’m giving her away so no doubt I will be in floods of tears. Until the dancing starts that is!
Looking forward to seeing your posts over the years to come. Good luck with your ongoing treatment.
I have 4 daughters so I'm super scared for them that they will have inherited my rubbish genes... Their attitude is not to get tested until they're nearly 30 as they won't screen for anything before then anyway so they don't want to know until they can do something about it. At least I can tell them to be really vigilant about symptoms/lumps & bumps in the meantime but it's obviously a worry. These worries do fade a little bit though - when it's all new, it's all at the forefront of your mind all the time, but it does lessen a little over the months and years.I hope the wedding is amazing, and of course you'll be in floods of tears, I know I would be! Look after yourself xx
That’s hard having 4 daughters to worry about. I guess on the positive side they will be more vigilant about their health.
I’ve just had a letter from the hospital about future appointments. On the letter it says BRACA1/2 no variant detected. I obviously don’t have the gene then which is brilliant news for my daughter. It obviously limits my treatment options but I’d sooner it be that way. It also says HRD deficient?? I have googled it but I’m non the wiser. I think I’m right in saying that again it limits my treatment options? . Can anybody throw any light on that, in words I understand please 😁. Thank you x
As I understand it, 'HRD' is the deficiency. It stands for homologous recombination deficiency. Your DNA is always being damaged and repairs itself - this is homologous recombination - but if you have HRD your cells can't repair themselves so well, including cancer cells. This is good in terms of treatment as olaparib/niraparib/rucaparib work best in people with HRD. Your letter should really say either HRD positive or negative so if it's unclear I would ring your cancer nurse specialist or maybe the Ovacome or Macmillan helpline and ask them to decode the letter for you. Or you could ask your oncologist at your next appointment? Hope this helps! Xx
Hi thank you that’s good advice. I will call either or tomorrow. My nurse actually called me today prior to the letter arriving but strangely she never mentioned it.
Hello again Beaver54 this means you have Homologous recombination deficiency. I think it can also be referred as HRD positive (can be quite confusing)!! If you're on Avastin now you may be offered Avastin and Olaparib for maintenance. Or a PARP on it's own. I'm HRD positive and on Avastin/Olaparib at the moment and so far so good 🤞🏼
Sorry that you find yourself on here....however this is a great place for advice, knowledge and sisterhood 🙏🏼
I was diagnosed stage 4b Feb 22. Unfortunately for me 6 weeks leading up to diagnosis I scared myself so much looking at Google and looking at outdated statistics. It was the worst thing I could've done, if I'd have known about this place before then I'm sure mentally I would've been in a better place!
I had upfront ultra radical surgery which included removal of lymph nodes (some showed malignancy but not all) then I had 6 rounds of what you're having. Carbo/Taxol/Avastin. I was BRCA negative but HRD positive which means I'm now on the Avastin/Olaparib combination.
Where I am today: currently NED with a good CA125 (although now I no longer ask to know this as I found my anxiety was awful if it fluctuated and mine does)! Been back to work for nearly a year and making the most of life. I have a 3 year old daughter and I'm determined to be around for her as long as I can be!
Good Luck with your ongoing treatment, my only advice would be on the days you feel rubbish try if you can to go for a little walk even if a few minutes and get a bit of fresh air.
Oh Halo 2014 thank you. You’ve really touched me with your reply. Thank you you for taking the time. , I wished I’d joined the forum earlier also, because against all advice I was Googling at every opportunity. I was a total wreck and despite family and friends trying to encourage me, I was having none of it. What a total waste of time and energy that was.
There is hope out there and I pray that you continue to be well for a long time to come. Who knows there may be a cure on the horizon.
I am older so will take whatever is given to me, but you are young and really don’t deserve this awful disease.
Hi, I was diagnosed 2015, with endometrial cancer which was stage 1b, but about 6weeks after my hysterectomy I was told that I also had high grade serous in 1 fallopian tube. I had 4 cycles of carbo taxol, and my 1st recurrence was in 2020, it showed a lymph node in the para aorta and quite a lot on the omentum. I was given carbo/ gemsar 6 cycles, and following that went on rucaparib (parp inhibitor) which worked almost for 18mths. I am brca negative. By this time 2022 I had carbo/ caelyx 6 cycles. My CA 125 started to rise again April/May, but at present I have no symptoms and feel really well,so I continue to be on watch and wait. I am a fairly positive person take every day as it comes and just get on with life. I walk and exercise ,so in that sense I am fit. I am 78 and I feel really lucky that I have come this far. It is very hard when you first get a diagnosis,but gradually you will get through the routine of seeing the Oncologist etc. I have always asked lots of questions and take a book with those in. This forum is really great, and offers a wealth of information, which has been very useful over the years to me.I wish you luck and you will gradually get used to the lovely ladies on here.
When my mom was diagnosed stage 4b almost 5 years ago - I thought that it was over for our family. But we have learned to sadly live with cancer - but for us it’s a blessing to have her here with us. There are many treatment options that are advancing every day. Stay a way from Google, use this forum as a great tool. Best of luck on your journey 🙏🏽
Hello! My mother had a very similar diagnosis to yours in Dec 2019 - Stage 4 OC. She had ascites, pleural infusion draining, debulking surgery and chemo. She's now on maintenance with Lynparza, BRCA2+, CA125 is 14 (you can read her story in my bio). As the other ladies in this amazing community, I also advise you to stay away from Google and statistics. There are so many great examples here, and treatment options continue to improve. Don't lose hope and when you read stories, focus on the good examples and news!
Hi Thank you for your message. I’m sorry your mum has had such a hard time and I hope she continues to be well .
I have now stopped googling ( I pretty much exhausted it anyway ! ) you ladies are all so right. I didn’t find any positivity there but have found oodles of it here, which has really lifted me, so thank you. ❤️
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this means you have Homologous recombination deficiency. I think it can also be referred as HRD positive (can be quite confusing)!! If you're on Avastin now you may be offered Avastin and Olaparib for maintenance. Or a PARP on it's own. I'm HRD positive and on Avastin/Olaparib at the moment and so far so good 🤞🏼
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