I had CA125 check after 2,5 months and it jumped from 12 to 88 (since debulking surgery in April 2023, it was max 8). I had some minor abnormalities in my scan in Jan. I was so hoping for good news but CA 125 of 88 left me speechless at my oncologist office I had CT scan and new blood check so will hear results tomorrow. So anxious
Last week my oncologist mentioned as possible switch from Niraparib to Tamoxifen (hormonal therapy), which I know is mainly used for breast cancer to stop hormone production. He said it could help 15% patients. Wonder if anyone has experience with this ?
I thought I am doing right things (mental therapy, physical activities, healthy food), what else I can do to keep this sht away? He said I am already doing everything right and can’t do anything better. I am super positive person but feel so disappointed now. Will be glad for any piece of advice.
Much love and hugs,
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And much love and hugs to you. You really are doing everything right and should award yourself five stars because we all know this is no easy ride, so please don't downgrade your five stars because you are feeling uncertain right now. I can't comment on tamoxifen as I am hormone neg. but maybe you should think about a second NHS opinion just to give you confidence you are proceeding on the best path. You have the legal right to a second opinion on the NHS. Always open every door, is my motto in life. You never know what may lie behind it and being your own advocate in opening your own doors can lead to real wins.
Thank you Emma for sweet message ! My cancer was also hormone negative that is why I am surprised. I am in Netherlands but indeed could go for second opinion here too. Normally I trust in my oncologist, so guess need to know first what is going on. Sincerely hope that nothing 🙏 best wishes to you, Emma ❤️
Hi, if your cancer is hormone receptor negative (especially ER negative), there is no rationale for using tamoxifen, which prevents positive estrogen receptors in cells from being influenced by circulating estrogen in the body. If these receptors are already turned off (ie negative), what would be tamoxifen’s role? Wishing you best of luck but a 2nd opinion would seem to be good.
thank you so much for sharing your advice, I see that you have studied hormones properly. “Funny” that before I met my oncologist and learnt my marker went up I first met my gynaecologist to discuss possible start of taking estradiol in spray to minimize hot flushes I am having (10-15 a day). Then I learned my marker went up and possible solution is tamoxifen and then I can’t take any estradiol … so instead of less hot flushes I might get now more … but as long as it works? I found in my pathology report that my tumor cells were by 80% coloured by estrogen. Am checking now with my oncologist if it means it was ER positive? I trust my team but of course they also can make mistake
It sounds like the report says 80% of cells are ER positive, but of course, must check w your doctor that that’s the case. If so, then tamoxifen makes more sense. Do you mind me asking what type of OC? Some are more estrogen driven than others, regardless of what the receptor tests indicate (based on my research). And I researched bc like you, I’m considering the estrogen patch.
Happy saturday I had high-grade serous carcinoma, epithelial stage 4a. Meanwhile my Doctor responded that there is no proven evidence between ER % and hormone sensitivity in ovarian cancer so basically he said we will see if tamoxifen reacts.
I thought patches are more “ dangerous” coz my mom developed little benign tumour in her breast (luckily it is still stable but she stopped with patches years ago). My Gynecologist told me it doesn’t really matter if you take spray, patch or cream as they all should contain same amount of estrogen. It is just maybe in summer when you sweat, spray is easier as patch can come off. And they say possibility of developing of breast cancer is very small. Hope it will work out for you ! Best wishes and lovely weekend !
Thank you so much for sharing what your doctor (I assume an oncologist?) said. Yeah, from what I’m reading it seems that science doesn’t know what a “hormone dependent cancer” is, aside from breast cancer. If a cancer is not hormone dependent, it seems that neither estrogen will “feed it” nor tamoxifen or aromatase inhibitors will help it (ie, stop it). There are several studies that show that HRT does not increase risk of recurrence in ovarian cancer (except maybe in low grade serous or possibly but uncertain in endometrioid). Still, the evidence is not strong enough for docs to freely say …go ahead use HRT or don’t use it (and deny the benefits), so they prefer to either say nothing or let the patient make a decision in the face of uncertainty. But again, that seems to be the case w/ everything OC-related. Not sufficient evidence even for the standard surgeries or even for whether adjuvant chemo helps in certain OC subtypes and stages. Essentially, there’s a lot of blind approach to OC, which makes decisions very difficult and costly. More studies please 🙏. The very best of luck to you!
it is hard when you do everything right, as you say. My oncologist recognised that in me, but said that it just happens and some things you just can’t control. I’m on Letrozole which is also a hormone blocker after my first recurrence was treated with carbo taxol - as maintenance. They tested my original biopsy this year to see if I was estrógen positive and said it was and started me on this for maintenance. I had never heard of estrógen positive so I was quite surprised when I was told it that a few tests would be run on the original biopsy. Do you know when your’s was tested?
Thank you so much for sharing your experience and your nice message. I read your profile and I see we have similar story. May I ask how did you find out about recurrence, where it was and whether it was solved by the chemo? Are you NED now on Letrozole? I really hope so !! I was looking at the pathology report of my tumor that was on ovary and it says 80% of it coloured by estrogen (ER) and 1% of progesterone. So does it now mean is estrogen positive? I asked the question to my oncologist too so hope will get answers. I started with tamoxifen yesterday so really hope it will work out and shrink abnormalities they found Best wishes to you !
Hi, I have only just noticed the alert bell telling me I have a message. I hope you are doing okay? As far as I am aware my original rumour wasn’t tested for hormones until this year, when my oncologist said he would get some tests run on it ( I had the ops at specialist centres). I was delighted when he said I was estrógen positive and could start taking Letrozole as a maintenance therapy. After my second lot of chemo my CA125 was back in normal range and tumours had decreased significantly. At my last scan I was told the lymph node was stable and CA125 still in normal range. In my mind, just having three more months this summer with no chemo was a major bonus so I am making the most of it (galore in fact) as I think come next scan I’ll be back on chemo but you never know….. I’m working on keeping my stress levels low and doing seated tai chi every week which is definitely helping. I even do the exercises in front of the tv now. Best wishes.
Thank you for your message and sharing your experience, it is truly helping ! I somehow came to peace with fact that my cancer may be active, I still try to picture that it is benign and will disappear .. is apparently 3 cm in pelvis while it was 1,6cm in January when marker was 5 (now is 106). Just like you I was gladly now taking this extra 3 months to test tamoxifen. We have booked our holidays to US for 3 weeks and I have wedding end of august and was already so anxious I have to cancel it all and if then have wedding in wig :(. Is hardly a year since my last chemo from original diagnosis. Glad you mention tai chi. I want to try that too ! I am doing antigravity yoga. Hanging up side down, not sure if is doing any good to my tumor but figure just need to build those muscles back up. And visualizing all is going to be fine …. Let’s hope this summer will bring us all some miracles and hopes for future 🙏🌞
Good luck to you. As you have adopted many ways to help your body heal, I wanted to mention that I am currently reading /listening to Radical Remissions, by Dr Kelly Turner. Her research and journey is empowering and fascinating as she sets out to study cancer patients who made radical recoveries, or as doctors call them “spontaneous recoveries,” but there is nothing “spontaneous,” about their recoveries bc they had to change a lot of things in order to heal, including their doctors. You are doing some of the things that most of them have done and if you haven’t read the book or watched the docuseries (I found the first one was available for free) - you might find yet more tools to add to the ones you are using to heal your body and mind. Even a nugget of info that lights up for you may be worth the listen/read. She has an updated book Radical Hopes, but I wanted to start with her first one which was the result of a PhD project for which she got funding before setting out to interview these patients and some of the healers. I also saw that you mentioned cutting out sugar, I agree with this instinct 100%, especially any sugar that is added, and processed but also even some “good” sugars may be bad for “your” type of cancer. It helps to know what your cancer type’s preferred fuel is. Going low carb and using low GI, and Intermittent fasting also introduces us to more veggies and complex carbs, much healthier choices. There is nothing extreme or radical in this approach and can lead to less inflammation and toxicity bc you have to make better choices of what’s going in and when (if you follow IF, and give your body a chance to rest and recover). You are doing so many things right, I love that one of them is hanging upside down yoga. I don’t think I could manage that one. And if it makes you feel good inside, and you enjoy it, it will be helpful. Seek joy!❤️ Someone in this group mentioned Jane McLelland’s book, How to Starve Cancer, so I looked into it and also signed up for her online course, and that got me started on learning more deeply about cancer, how it works and why “standard of care,” often falls short. That’s not to say it doesn’t work, but I think we need more options to help it work better. This book led me to consult with Care Oncology in London (not the usa, that one is not recommended currently) and they are able to look through your records and give you advice and “off label,” meds that can compliment the “standard of care,” treatment. The end goal is to starve the cancer from cutting off as many of its sources of fuel as possible. For my rare cancer, I can not just wait to see if the standard of care alone, esp post chemo, will work when often it doesn’t for some cancers , but especially for my cancer (mesonephric-like adenocarcinoma of the ovary, MLA) which does not even have a protocol so my oncologists have to rely on the treatment options for high grade serous ovarian cancer. And then we wait, after chemo and during ongoing Avastin infusions. That’s what the available treatments is, and if there is recurrence, they’ll look at other options. During that time are we doing ALL THAT WE CAN to reduce or eliminate recurrence? I don’t think so, not for my cancer bc we are relying on guesses since the cancer type is relatively new and has high rate of recurrence and is very aggressive. Understanding your own cancer seems to be a key factor in choosing what diet, off label treatments, potential supplements alongside exercise, attending to emotional baggage, and living a cleaner existence- all of which takes a lot of time and effort and resources, without getting suckered in by dangerous YouTubers. I try to stay within this and other science-promoting groups, pubmed or practitioners who are operating within those circles. 🌷 It can be overwhelming. It is overwhelming.
thank you so much dear !!! I am completely with you on this one !!! Is what I also told my oncologist, just tell me what is it that harm or interfere with my treatment so I don’t jeopardize the treatment itself but then yes, what else I can do to figure this and if I cannot trust this cancer to stay away I want to trust my body and mind to beat it ! Listen to my body and mind what tools they need to fight it. Thank you for the tips, I will dive into this too. I try to also base my research on more scientific base and maybe some Chinese medicine but as you say is overwhelming. Happy to stay in touch to share the learnings 😘 man, the god thought we are so strong we can figure this one out so let’s do that 💪😘
Just to add to what's already been said - you are doing everything right. If there actually were a miracle diet, we'd all be on it and no-one would have cancer. You've done everything that can improve your odds, but cancer doesn't play fair. A second opinion wouldn't hurt if it's easy to arrange. Hope you get some good news soon.
Thank you for your nice message ! Meanwhile I had my results back. My CA went up to 106 (from 88 last week) and they found 3cm abnormality in my abdomen area. Otherwise everything is more or less clean only little spot on diagram. I was also wondering how is exercise (Pilates eg) working on potential tumor? I am trying to strengthen core after surgery but now in doubts whether my 28 wall Pilates challenge didnt encourage tumor to grow. You are right cancer doesn’t play fair and I really am puzzled whether I can help myself or harm myself. I was also considering sugar and carb free diet because so many books suggest to hunger the cancer but my oncologist is clearly against anything drastic. But if you do same things don’t you get same results? I wish you the best and thank you for taking time to write me.
I too have been wondering about certain exercises eg Pilates and swimming. I haven’t had chemo since Christmas and things stable on Letrozole. I’ve been mainly going to seated tai chi and Pilates classes and walking of course. At the back of my mind I wondered if the swimming I did last summer was affecting lymph nod…. Esp as I am missing 22 lymph nodes removed on surgery- for necessity and I’m grateful - no evidence of C in any of them. I’ve laid off the swimming this time and add it in every now and again.
I had meanwhile checked with my oncologist and he stated he is absolutely sure that Pilates -> building muscles in abdomen -> cannot harm rather than opposite, he wants to have me strong for any possible treatment coming our way (which I hope is absolutely not necessary). Swim is king of all sports I believe, the only reason why is skipped it as I was afraid of infections since my surgery (now this is an excuse I should go back to it …). 22 lymph nodes removed ! That is quite a lot. From which area if you don’t mind me asking ! Is amazing though you had them clean !! Wish you best !
Thank you so much, this is very helpful !! I am doing just that, try to eat natural sugars like lot of lovely strawberries, raspberries and blueberries that grow now and are so yummie just try to minimize white carbs and processed sugar …
Hi. I have just started Tamoxifen pills daily as I am told my high grade serous primary peritoneal cancer is oestrogen sensitive. I was diagnosed three and a half years ago and have tried Carboplatin and Paclitaxel, ultra radical surgery, Niraparib, carbo Caelyx and weekly Paclitaxel. My CA 125 is 4500 plus and rising...first recurrence Spring 2023 and second when I became allergic to Carboplatin in the middle of chemo last Christmas. The Caelyx alone did not work well, ditto weekly Paclitaxel. It would be good to hear from anyone for whom hormone therapy has worked. My options now are very limited. Thanks.
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I had CT scan and new blood check so will hear results tomorrow. So anxious 
… but as long as it works? I found in my pathology report that my tumor cells were by 80% coloured by estrogen. Am checking now with my oncologist if it means it was ER positive? I trust my team but of course they also can make mistake 
I had high-grade serous carcinoma, epithelial stage 4a. Meanwhile my Doctor responded that there is no proven evidence between ER % and hormone sensitivity in ovarian cancer so basically he said we will see if tamoxifen reacts. 
Ovarian cancer after bowel cancer? 
1st recurrence ovarian/ carbo/caelyx 
New to Ovarian Cancer 
Recurrence of ovarian borderline serous tumour x
Monitoring for a recurrence
