I was diagnosed stage 3C high-grade serous Ovarian or Fallopian cancer in Oct 2016. I’m BRCA double negative. I’m 42.
I had a nine-hour surgery and six rounds of carbo/taxol at the Marsden which finished 12/04/17. I was clear for twelve months.
I have now had rising CA125, doubling between January and May. My scan in April didn’t show anything except a possible 4mm nodule that “might be something, or not”. I had another CT and an MRI last Wednesday and see my onc next Wed. When I saw her three weeks ago she said I could expect to have treatment again sometime this year.
But the thing is I am starting to feel unwell (which I didn’t first time round). Every day I feel fuller in the tummy and more tired. I feel a little short of breath and have some discomfort in my lungs. It seems to get worse every day.
I’m panicking. It’s bad enough I have to go through all this again but to actually feel what the cancer is doing is terrifying. Right now, I feel like I would be dead in months if I did nothing.
Anyway, I’m not really asking a question here. I’m just venting somewhere I know is safe and understanding.
I know so many women have relapses and I always knew there was a high chance of it coming back. But I thought I’d be one of the lucky ones, you know? I thought it was just a blip and then I could get on with my life. But now I realise I am going to live with this for the rest of my life. And that is heartbreaking.
Thanks for reading.
Sarah xx
***edited to add photo of me and my husband at a wedding last weekend. How can I possibly have cancer and be so happy and healthy! I am glad the wedding wasn’t this weekend - I wouldn’t have been feeling so well.
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Hi Sarah so sorry you’re feeling unwell and this beast is stirring again for you! I’m being treated again 4 months after front line and I too am really disappointed and scared it wasn’t longer and I’d love none of us to ever have to have this horror cone back!
I’d ring your CNS tomorrow and ask to be seen as soon as possible if you’re symptoms are worsening! If you’re not happy with your onc then get a second opinion pdq!
Good luck and fingers crossed for you x keep us updated with how you get on x
Thanks Bev, I appreciate your words and I’m sorry you’re facing treatment so soon after your first round. I will call my nurse tomorrow but she’ll say just hang in there until Wednesday. It’s only a couple more days I guess. I do like my onc - she definitely saved my life the first time round. She’s the lead gynae onc/researcher at the Marsden, so I am in very safe hands.
Hi Sarah... I am also coming to terms with my first recurrence and although I am not yet symptomatic I check every day to see if today’s the day. Like you I hoped I would be one of the lucky ones but knew in my heart it would return.
I have known since January that something was going on so I guess I have had time to get used to it but I am struck when I tell people and they have that look about them that says they secretly think you are a goner.
So I do understand...sending you a hug...perhaps this time next year we will be thinking more about holidays and not so much about treatments! xx
Thanks Lyndy, I’m so sorry you’re facing this again too. Re holidays, I said to my husband that if we get bad news this week, we’re taking the kids out of school and booking a last min holiday to Greece before I start treatment. But the way I feel now, I’m not sure I’ll be well enough to do that. So upset. I have a family trip to Italy booked for August too, so even that looks doubtful now! This cancer thing is really inconvenient!!
I can totally relate to what you are saying. I was diagnosed stage 3 at 38, and I’ve been living with this disease for 2 years now. Like you, I thought it would all just be a blip in my life and things would get back to normal once I finished chemo. However that wasn’t to be, and My first recurrence was around 10 months after finishing 1st line treatment. I managed a nice little period of ‘watch and wait’ before starting chemo again, but I’m back in limbo again with a rising CA125 (in the 400s 😳), but nothing visible on the scan.
I can totally empathise with how you are feeling. It’s a crappy place to be and messes with your head. The only consolation I can offer is that our community here is very supportive and we’re with you every step of the way.
Thanks so much Vicki. I’m sorry you’re living with all this as well. I keep wondering if I’m imagining it all, maybe it’s psychosomatic and I’ll find out that it’s nothing. But then I face reality and I know it’s back. I just feel like I’ve had my share of bad luck in the past four years and I am due a break!!! I guess I just have to find “the serenity to accept the things I cannot change”. Thanks again for empathising - it helps to know there are others who understand how I feel.
I’m being treated privately (thanks to work medical insurance) and I had carboplatin and gemcitabine with Avastin. Not convinced the Avastin has actually been effective, but never mind. They normally offer carbo + another agent, sometimes taxol if you did OK on it first time around, or else caelyx or gem. Hopefully you’ll still have a bit of time before you actually need to start chemo again though.
If you are in on Wednesday, are you at Sutton? My appointments are always on Wednesday, but I’m not there until 13 June. Vx
Yes Wednesdays at Sutton. I had my surgery at Chelsea with the other Dr B, but had chemo at Sutton as we’re in Sussex. I’m also extremely lucky to have private health thanks to my husband’s work. I’m so grateful for that!
I’m wondering about this new drug they approved on NHS the other day - nariparib. I know it’s only available on NHS after two lines of treatment but I’m wondering if I could get it privately. Guess I’ll find out on Wednesday. I’m a nervous wreck! I hate not knowing what going to happen.
Just chiming in to add, you need to pay attention to your lungs and emphasise this to your Onc.
2 things could be going on: you could be experiencing a pleural effusion, pressing upon your lungs and cutting into your oxygen supply.
In addition, our cancer can cause our blood to become “sticky” causing blood clots to form in our lungs.
I was one of the lucky/unlucky ones who suffered from both, including partial collapse in both lungs. My cancer experience was being totally sick and unable to do anything until treatment took hold, and thankfully Carbo/taxol knocked it on the head and my lungs slowly recovered with time.
Fingers crossed I stay this way and I hope your next treatment will do the same for you.
I also agree with you that you should ask for Niraparib to be added to your regime after even if you have to go private.
I was diagnosed September 2016 and had the usual 4 rounds of chemo debulking then 2 more rounds of chemo carbo/taxol with avastin, for stage 3c high grade serous. I finished my chemo last Feb. 2017 and was on avastin only until end so February this year. My remission was over a year. My scan last Jan was clear but my routine ct scan after finishing avastin last April showed disease progression in my peritoneum and my ca 125 was 571 from 16 , I knew it was back because I felt so bloated again. Now I started my 2nd line treatment 10 days ago. Carbo/taxol again. Although 1st line was a breeze, this time I was so sick which is weird as it's the same chemo drugs and dosage. But everybody is different. You might be ok. Thinking of you. Take care and big hugs to you.
Hi Sarah. Reading your post I can feel your heartbreak and and understand why, I think when we are diagnosed we go through all sorts of emotions . I know that arfter my chemo and surgery then went back for 3 month check up all was ok, so thought I was going to beat this beast arfter all. but the next 3 month it recurred that was near 4 years ago.in that time I'm now on my 6th treatment it's not been easy and I'm not brave but all we can do is
keep hoping that treatment will work and with new trials and treatment we do have a chance.
As Bev said ring your CNS let her know you need to see her if only to give you some peace. I'm glad you feel you can corresponded here and feel safe and we do understand so keep in touch. take care Lorraine xx💙💙
Sorry to hear you are facing possible recurrence - I think this not knowing stage is so hard ( I’m in similar boat with elevated ca125 but nothing showing and on scan rescan treadmill) - I didn’t have any symptoms last time until few days before diagnosis and huge tumour so it’s hard to know what might or might not be a symptom now - i think fatigue and feeling a bit unwell could be down to anxiety as much as to any recurrence though the breathlessness needs checking as it could be a pulmonary embolism which you can get from cancer or just your bog standard DVT - although it seems ages off , Wednesday is not too long to wait though perhaps ring CNS and mention breathing thing as they might send you for chest X-ray and /or stick you on end of earlier clinic x
Hi Sarah what a beautiful photo. I could have written your post sounds like me only I haven’t got breathlessness just a crackling sound on my chest when I lay down.(anybody else had this).
What can we do only one thing fight. If I am right I am in my 2nd recurrence 1st treated with carbo and doxil kept me stable .
Would not have taxol again don’t want to lose my hair it’s easier for me to cope not looking ill as I look a picture of health Like yourself but not as pretty.
Once the terror subsides and the medical team give support you will get on with it.sending you lots of strength and acceptance to fight another round. Best wishes maureen
Hi Sarah - I’m really sorry to hear you’re having a recurrence and suffering with symptoms. I was diagnosed in December 16 and looking at the thread I think we have the same team - Dr B and Mr B. Dr B would be the person to ask about Niraparib/Zejula as I’m pretty sure she was involved in it’s development. I think it would be given as follow up after second line to limit progression so I’m sure you’d be able to have it. Andrea xx
Hi Sarah. Just to say - what a beautiful photo! 🙂 And you both look so happy (& healthy!). It amazes me how even in one week, we can feel worse. I am NED at the moment but I remember just before diagnosis in March ‘17, feeling weirdly unwell, breathless, bloated. It seemed to get worse every day while I was waiting for my MRI & Cons appt. I really sympathise & hope you can last until Wednesday. If you feel worse, you must be seen - remember your GP can ring & get you seen if you really need to. Let us know how you get on.
You look amazing and its a beautiful picture. I had no symptoms at diagnosis and didnt even feel unwell after the debulking surgery. Coped really well with chemo first line. Then i recurred 9 months later. Was on watch and wait for 5 months and felt well. Then i started to feel very unwell with bloating,tummy pain and back pain. I have suffered terribly with ascites and 4 weeks ago thought i was definitely dying. However, ive just started my 4th line of chemo and have turned a corner. Ascites has gone. I had a permanent drain fitted and its not been used. I was 3c at diagnosis. Im answering that i didnt feel ill first time. Never felt so ill as this time but dont give up hope because i cant believe i have come out of a terrrible time. Good luck x
So much you say is relatable! I was diagnosed in July of 2016 and my young, somewhat inexperienced oncologist kept telling me after Frontline and NED that I should start paying attention to my body at about the 16-18 month mark--that is when it might start to rear its head (I was dx as 4a). Well, 7 months later, my ca125 started doubling and like you, thought I would be THE ONE that would not have it return. I still have hopes for longer remissions on treatment(s) which I know is possible. But vent away--its always nice to be able to in this forum and be with those that understand. GOOD LUCK and hope you can get in earlier if the discomfort gets worse. oxoxoxx Judy
Hi very new to this group as just been diagnosed with cancer of ovaries. I can imagine how you are feeling just wanted to let you know you are not alone. Hugs xxxxxx
Thanks everyone for your comments. I rang the hospital this morning because I was just so uncomfortable when I woke up, it sent me into a bit of a panic. They asked me to come up straight away. It’s an hour drive but I’m glad we went, as I was given the scan results. I have “extensive multifocal peritoneal disease with lesions scattered in the abdomen and pelvis; largest lesion measures up to 45mm.” Also disease seen near my liver. Nothing in lungs, no ascites, no bone disease.
So this is all relatively good news in the scheme of things. At least it’s not metastatic.
The crazy thing is how fast it’s grown. My last CT scan was April, last MRI/MCRA was in March, and they showed nothing!
The other crazy thing is how much easier things seem when you have a diagnosis. The anxiety is much less now I know what we’re dealing with. I’m going into treatment mode, getting ready to just focus on getting well again.
I still have my appt on Wed to discuss treatment. I really want to get a holiday in before treatment starts but I just feel worse and worse every day, so it’s looking unlikely.
Thanks so much everyone for your support and kind words. YoshBosh, I will probably be meeting you in the PP Day Unit on the 13th!!
Hi, my name's Liz I have stage 3c clear cell ovarian cancer . I had a 2 lb mass there not really sure were it started it engulfed all my female organs my appendix and I had to get my colon scraped. I had a 5 HR surgery and then an 8 HR surgery, removal, debulking, 15 lymph nodes. Removed. This occurred in April 2014. 4 weeks later 1 round IV chemo, second time I had IV and IP intraperitinel chemotherapy, it's supposed to extend your life and delay reoccurring cancer 18 mo. To 3 yrs to allow you to get back to normal and stronger. I was 51 when diagnosed I'm 55 now. If your in the UK, they don't seem to do this in the beginning, but you are stage 3 fight for it! It works! I did 18 rounds of chemo total with both in 14 weeks my onc/ gno is a strong women, I'm strong I told her to do what treatment she would want if in my shoes. Please try this, you may have to fight. People on this sight are having reoccurring disease I think there from UK. Please try, insist! It works ! ❤❤❤Liz
I feel so sorry for you and your post is heartbreaking. Yes, the ovarian cancer is a cross that we have to carry during the whole life, but please there is always hope and even when the beast is back.
Hello I have just read your post, my journey seems similar to yours , mine came back after 12 months, didn’t have any symptoms. I started second line chemo in June, CT scan was good, tumour had gone (oncologist did say if he looked under a microscope he may see some cells) I have now started Niraparib to hopefully keep it at bay, only on the low dose as the side effects were sending my bp up. I realise your post was 3 years ago, just wondered where you are now regarding treatment. I am just so extremely anxious all the time! Take care Angie
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