Received letter from onc...... Not a happy lady today :(

CT scan confirms further progressive disease. The retro peritoneal lymphadenopathy has doubled in size!!! 1 node was 10mm, now 25mm. Another 10mm now 16mm. One more 11mm to 19mm. Numerous peritoneal nodules measuring up to 2cm that have also increased in size. The onc cannot believe I am so well. No abdominal pain, no evidence of lower limb oedema, appetite good and increasing weight. Further chemo is on the imminent horizon. I knew all of this but when you read it, it makes it sound do final. A little light at the end if the letter says that if, on 24th October, I am well and asymptomatic she will hold off chemo a little longer.

My concern is......... Shall I agree to hold off for a little longer or start chemo straight away??? Advice and some support please ladies. Thank you xxxxxx

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  • Hi Izzy,

    It is a worry isn't it? I suppose it all depends on whether you trust your oncologist or not....I have read that there is a better response if you don't start chemo too soon, but I didn't have this dilemma, my dilemma was whether they would scan or not, I knew I had a recurrence as I had symptoms, but it was getting them to take notice...when I had a scan... I then asked if they should delay chemo (thinking I had twisted their arm) the oncologist looked stunned and replied I needed chemo straight away.

    You could ask Ovacome's advice tel 0845 371 0554

    Best Wishes love x G x

  • Thank you Gywn. As usual good advice. Such a worrying time. I will keep you updated. Xxxxx

  • There are several thoughts on this which i,m sure others will debate. In my opinion its good to zap the blighters when your strong and feeling well. The alternative is wait until you become unwell but then the risk is how unwell do you wait. Would you be able to take treatment after complications arise. The other school of thought is your current quality of life would continue for an indefinite time, extending the time that chemo options are available for probably a further year. I can only express Sandra,s experience, within only a few months after her debulking surgery in 2010, her CA rose to only 20 but a scan showed disease on her spleen. The decision was to zap it with the Rotterdam regimen. Had she waited she may have had something left in the cupboard for next year. Its a difficult call. Love Paul xxx

  • Hi Paul ...

    You speak candidly and honestly .. Thank you Tina x

  • I am going to think long and hard. Listen to the onc but listen to my body. Does 2nd treatments work better the longer the 1st treatments are out if your body. I suppose that's one question on the list of many. Best wishes xx

  • Hi Izzy,

    I think this might be the case the longer the gap between chemo's the better the outcome,this is a good question to ask your oncologist, you could also ask (as well) what might be the consequences of leaving it longer (if there are any) ask if it was his/her mother, sister, aunt, niece, what would he/she advise them. Love x G x

  • Sound advice. My dilemma is that I am going to get the wonder drug AVASTIN along with the next lot of chemo. The 'Target Ovarian' website state that this is the first 'anti cancer' drug in years. I don't want to miss out on getting AVASTIN but that comes along with the chemo :( Such a big big decision. Love n hugs as always xxxxx

  • Hi I had Avastin first line and after the chemo there was still the odd bit left now after 15 treatments I am clear! My first two were with the chemo and didn't seem to have any adverse side effects!

  • Hello. Thanks for your response. I wasn't given the option of Avastin first line. I was on ICON8 weekly trial. So pleased to hear you are clear. It's give me hope that Avastin will be the answer to my prayers. XXXX

  • I have been told by various people right up to professors that it is not a cure but gives you time which therefore gives me hope they will find something better hopefully in the near future!

  • I totally agree. We all want more time and I am sure one day this rotten disease will be beaten xxx

  • Dear Paul, I'm sure you and Sandra did what was best. Sadly for the majority of us our time runs out. The most important thing is you have had time together and that you continue to enjoy each other's company. You did mention she was feeling better than for some time. I've been wondering how she is.

    Please give her my best wishes. Annie

  • All us ladies that have endured chemo know how rotten it makes you feel. J would do Anything to delay that feeling again. I will wait and see what onc says. Love n hugs Izzy xxx

  • Hi Izzy,

    I understand where you are coming from!!

    I have recurred in my para aortic lymph nodes, and although I am asymptomatic like you, my CA125 is 66 (so not too high) I have been given options of whether to start chemo straight away or work. Their theory is that whether you jump in straight away or leave, it does not affect the overall outcome. They want you to delay treatment when you are well, and so therefore given you more time not enduring the terribly side effects of chemo. The respite period is supposed to get shorter the more treatments you have.

    I am also in the same position, and have an appointment on 8th October to discuss further with my specialist.

    Your life is on hold again, like mine.

    I am going armed with lots of questions to be answered before I make a decision.

    Keep us posted, and likewise I will do the same.

    Sending hugs...us girls must stick together!!

    Janette xx

  • Not glad that someone knows how I feel because you are going through the same emotions as me. At least we can share our thoughts and bounce questions off of each other. Please let me know his your Q & A session goes with your onc and what the decision is. I will keep everyone posted. Love n hugs xxxxxxx

  • Snap - I recurred there too - first recurrence. Have had surgery and just started chemo. Like you my CA 125 was not that high and I had no symptoms, but my inclination, to quote Paul. was to try and kick the blighters. Do you know about the DESKTOP III trial which has started recently - if this is your first recurrence and you're platinum sensitive? May be another question to add to your list. Hope it goes well on the 8th.

    Chris x

  • Thank you Chris. I have just read up on this trial on the Cancer Research UK site. Not too sure if I would meet all the criteria but it certainly is worth speaking to my onc about it. Again I am not sure if my OC ever went!! After surgery I was told there were deposits in lymph nodes. I think it's them that are growing. Writing down all the questions I need to ask. Take care izzystep xxxx

  • My team suggested the OC could have been there in the nodes all the time undetected and not showing up in the post treatment CT scan. Alternatively it wasn't and this is a straightforward recurrence. Another demonstration of how little is known. Mine's high grade serous too. What do the dratted things want to grow for!? Let us know how you get on Tuesday and enjoy yourself over the weekend. Chris x

  • Hi Chris. As I said before can't grow a bloody thing in the garden but can grow cancer!!!! So little is known about OC. My appt not till 24th but I will let all know. Love Izzy xxx

  • Hi Izzy .

    I was wondering what grade your disease is Love Tina x

  • 3C high grade serous OC. XX

  • Hi Izzy

    Sorry I can't help, but just wanted to send hugs (((xxx))) and all the best to you. It's ****, this disease, isn't it? I hope that, whatever decision you make, it works for you and that you will get a good long time in remission.

    Love Wendy xx

  • Thanks Wendy. It is S**T lol xxxx

  • Hi Izzy,

    Also in the same boat, rowing right behind you.

    God I hate those letters always looks much worse in writing!

    I'm having Avastin as a maintenance 3 weekly which I'm tolerating fine, but my CA125 continues to creep up. Given up asking what it is now, don't need the stress! But oncologist thinks avastin is doing some good in slowing things down. I'm feeling really well so we have decided to scan in November see what's happening, with a view to 2nd chemo hopefully after Christmas. My Onc thinks as long as you are feeling well you should hold out as long as possible, but then I only finished first line in June. She has said ideally ou need at least 6 months off chemo and that the more time you have in between, the better the chemo will respond again which I suppose makes sense. I'm going to be guided by her but my own feeling at the moment is I want to carry own feeling well and will put it off knowing that she will step in and tell me the time is now if she feels it is needed.

    Sending all best wishes and a big hug. Try and enjoy yourself while you're feeling well.

    Lynne

    xxxx

  • "Row row row the boat, gently down the stream, another round of chemo will make you want to scream". Oh I think I am becoming a rival for Gywn, our resident poet lol. I have sooooo many questions to ask my onc I pity the ladies behind me. Their appointments are going to be late!!! I never got Avastin 1st line but think the funding has been agreed for shown I next have chemo. So many contradictions. Start chemo now, whilst feeling well? Or wait till you get ill? Will it work as well? What's benefit of starting now or delaying till you are ill? QQQQQQQ's by the bucket load and more to come before my 24th October. Sending much love xxxxxxx

  • High Izzy when my oc returned my symptoms were shortage of breadth due to blood clotting I tried alternatives before going on the chemo. route and left it 6 to 7 months before I started Chemo. again Carboplatin /paxitaxol I am now all clear again, and my Onc. said they do leave it till they really need to start chemo.so it worked fore me.

    hope this helps? love Jenny xxx

  • So pleased you got an all clear after your 2nd treatment. Did they give you same chemo 2nd time round as your 1st. My onc is giving me carbo plus germicide. Leaving the paxi out. Oh dear what a worry. That's another question. Why a different chemo? Good luck to you. Love izzy xxxx

  • No I had just carboplatin 1st line now carbo. and paxitaxol I think it depends on type cancer mine was stage three serous. All ONC's have their favourite treatments I'm sure, but the best of luck keep us informed love Jenny xxx

  • Mine was 3C serous. Every onc has different views for different ladies. Wouldn't be any fun if we were all the same lol. Hope treatment going well with not too many side effects. Love n hugs Izzy

  • You will have the same history as me Jenny.. High Grade Serous. Stage 3. Carbo-platin first time round and this time Carbo-platin and Taxol. It gives me hope your second line worked so well. xxxx love Annie

  • High Annie yes it worked for me and feel sure it will for you too, also I did not start treatment until 6 months after return of the beast, just like you Onc. left till real symptons returned I wish you well. Mind you I did try alternatives first thinking I could beat it Rick Simpsons Hemp Oil it did not work on ov BUT it has worked on my friends niece in the last stages of breast cancer and chemo. for her no longer an option, her Onc. is amazed she is getting well again So it does work on some cancers alas not OV

    Love Jenny xxx

  • Dear Jenny I was really delighted to read that you'd done so well on carbo-taxol on an earlier post. That's brilliant news. I'm really pleased too that your friend's niece is doing well on Hemp Oil. I think when we get to the stage that conventional medicine can't help us why not try anything so long as it's not going to do any harm. Who knows, it could be good for the soul even if not for the body and that's an important part of us.

    Let's compare notes. xxx love Annie

  • Will do xxx

  • Dear Izzie

    Your experience chimes much with mine. I started to relapse a year after chemotherapy last November. I am asymptomatic too. We started a watch and wait. In Wales where I was treated patients aren't shown scan results and don't receive copies of letters after appointments so we're left in the dark as to exactly what is going on. The oncologist just used vague words like there was a small increase in tumours, or they'd grown, etc. I didn't feel too worried and she didn't appear to be worried either.

    They kept a regular check on me from November last year and through this summer. I had to keep an eye out for changes to bowel habits, pain, etc. At every visit the oncologist checked my abdomen and knocked my back to make sure it still sounded hollow. I'm still asymptomatic but last week my oncologist told it was the right time to resume chemotherapy and I accept that she knows better than I. I start on Tuesday and this has given me 11 months of quality time since starting to relapse. I have been extraordinarily lucky as the fast-growing undifferentiated cells have grown slowly in my body over the last year and the result is I have been free of chemotherapy for 2 years. I value the time I've been free of symptoms and free of the side-effects of chemo and I have enjoyed every moment of that.

    I heard an interesting talk by Professor Gordon Rustin who showed two slides comparing the USA model of treatment with chemotherapy vs the UK model. He said in the US patients tend to be given chemotherapy as soon as the CA125 count rises and in the UK we wait. The slide showed a slightly longer survival in the US but he told us that women had been on near constant chemotherapy regimes there which gave them a poorer quality of life overall.

    Chris makes a good point about DESKTOP. Having an elapsed time before needing more chemotherapy gave me time to look into DESKTOP. I referred myself to another NHS Trust as my original one didn't offer it. It was reassuring to go through the discussions with the team who could discuss it as part of a menu of treatments. They did a PET scan which showed that surgery at first relapse wouldn't do any good for my particular presentation of cancer. I'm really glad I went through this process as I found it very reassuring to have looked at all the options and I'm content that restarting chemotherapy is the correct decision. I feel strangely at peace with this which I didn't expect would be the case. Hopefully it will be completed by the end of January and I hope to get another period of remission and enjoy every moment I can.

    Gwyn's comment rings true. Whilst I had every confidence in my former oncology team I didn't think they had the breadth of resources available elsewhere and therefore they didn't bring them to the table during my consultations.

    I have great hope for what you describe as the 'light at the end of the tunnel'. It may be your oncologist considers that you still don't need treatment on 24th October. May that situation long continue.

    love and best wishes xx Annie

  • Thought I as replied to you Annie, but not appearing, so here I go again. Thanks for such an informative response, lots of good stuff. Interesting from the USA, quality versus quantity --- another good discussion to be had on this site. Not sure what side of the fence I am on that one. I have read up a little n DESKTOP, but not sure if I meet the criteria, however I will speak to my onc and get her views. I am sure London will be included in this. I tend to do so much research and reading that when I see my oncologist she seems surprised hat I am so well read. Being in this fantastic support network also arms me with lots more information and questions, so please ladies KEEP IT UP. Thanks again, love n hugs Izzy xxxx

  • Dear Izzie

    Good luck with your thoughts and decisions in the lead-up to this next treatment. It's good you're looking into things and that you're interested. I really think oncologists value a patient that goes armed with questions after some informed reading and value that.

    I understand where you're coming from wondering whether it's best to restart chemo or leave it awhile. I'm certain this depends on many things including how the patient feels and what they want for themselves.

    I too read up on DESKTOP and met all the stated criteria. Again it's a matter of asking about it and hearing what they say about your particular presentation of the disease.

    It is a fantastic support network. Good luck with your thoughts. I'd dearly love to hear how you get on and what you decide. xxx love Annie

  • I sometimes think that I have turned into an oncologist lol. I ask so many questions, but my oncologists always give me straight answers and I never feel rushed. I think it is important to research and this site has given me food for thought and even more questions. I do, I think, have a very big decision, or maybe the onc will make that decision easy for me when I go to see them on the 24th. I will let everyone know. All the ladies that I 'talk' to on this site are so supportive. I feel I have made so many new friends. Love to all xxxxxxx

  • Hi Annie. Thanks for sharing your experiences about the DESKTOP trial. If you don't mind, I would be interested to know their reasoning behind why they thought surgery wouldn't be a good option for you after the PET scan. A big thumbs up for remaining asymptomatic for 11 months after signs of relapse. I hope to be as lucky as you as I am also on a "watch and wait". Seems to be a popular location recurring in those pesky lymph nodes. Makes you wonder why they don't take more lymph nodes out during initial debulking surgery.

    Anyway, all the very best for your next lot of chemo on Tuesday

    Good Luck Izzy at your next appointment with the Oncologist. You've had such great advice, that I can't tell you anything that you haven't already heard. Just to say that my Onc also supports extending the amount of time between chemos and only treating when symptomatic.

    xx

  • Dear Sue, I was reticent to mention the reasons in case it caused any worry for anyone. We're all very different. This reply is for you.

    The overarching reasons for no surgery given by Mr Barton of the RM are if tumours are in two entirely separate sites it would be dangerous I'm not entirely clear what he meant by that statement because the CT scan they were working on showed that there was disease in the para-aortic lymph node and little bits of disease widespread and deep in the abdomen. Mr Barton must've considered it an option at that stage as he organised a PET scan.

    Mr Barton also told me that surgery is not an option for any women with ascites.

    I saw slides of PET scans at the day in the Royal Society of Medicine. They looked like slices of salami. Mr Arjun Jeyarajah, Consultant Gynaecological Surgeon, Barts Hospital, Barts Health NHS Trust was the speaker and showed images where the tumours were un-resectable. I got the impression that it was only by doing a PET scan that the surgeon can make the final decision as to whether a patient would benefit from surgery.

    For me, going through the PET scan has made me feel I've explored all avenues. I was given the impression that a conclusive decision cannot be made without this.

    My surgeon took out one lymph node and said she would have liked to take out more but didn't take out because her supervisor Mr Howells, stopped her. According to the CEO of the NHS Trust she is trained in radical techniques. According to a member of staff at the same NHS Trust the barrier was theatre hours. This was shared with another patient who passed on the information to me and I didn't hear it myself. I'm sure there are many reasons why more centres don't offer more complex surgery and from observation a while back I did wonder whether there would be resistance from the old school surgeons who are not trained in these techniques. Mr Jeyarajah said there needed to be more young graduates from medical school trained in radical techniques and to set up teams in a limited number of hospitals that had appropriate resources. I got the distinct impression that the jury was out on radical surgery vs traditional surgery.

    Thanks for your good wishes for Tuesday. I feel at peace with myself with this as I believe we've looked at all the options and this is the right one.

    I hope you enjoy many more months/years without chemothearpy.

    Love Annie xxx

  • Dear Annie,

    Thank you for the detailed explanation. It really is hit and miss at how thorough the debulking surgery is. I had no lymph nodes taken out with my surgery but my Dad at the same hospital had 30+ lymph nodes removed for his cancer related surgery. I was told that removing lymph nodes can cause problems like swollen ankles/legs?!!! When you look at the big picture, I'm sure a lot of us could put up with a bit of swelling in the hope of a longer period of "remission".

    Sounds like they are taking good care of you at the RM. I'm sure the hassle of re-locating was well worth it. If I remember correctly, you will be having carbo/taxol ....if so take plenty of books/gadgets to keep yourself busy. It will be a long day!

    Take Care xx

  • Dear Sue,

    Thanks for the good wishes for Tuesday. I've brought my laptop and CD player and have a couple of CDs. Waking Ned Devine and The Girl from Paris. That should keep me occupied. Margaret says she slept through Taxol when she had it 3 weekly. I wouldn't mind that at all.

    I don't really know what to say about the debulking surgery. Let's hope your lymph nodes were left for all the best reasons. Anyway you and I can't turn back the clock and I don't feel negative about the experience just a little cheated. At least for me chemotherapy mopped it up and gave me a carefree life for a couple of years so I was lucky on that score.

    I've been editing the drafts for an Ovarian Cancer Action booklet and the original included suggestions for some searching questions about the surgical team. I first of all thought it wouldn't be appropriate for patients to ask about their expertise but I've changed my mind and if they could suggest the right words I think it wouldn't be a bad idea.

    There's a nice little café opposite the hospital so I'll take in a panini and a litre of water. I've had a bit of hassle from my daughters this weekend who are horrified I want to go there on my own, get back home on my bike, and spend the evening on my own sitting quietly. I feel as though I want some space for reflection this time. I guess that's selfish of me because people do like to feel they can help. Difficult to manage everyone's expectations.

    Loads of love xxx Annie

  • Hi Annie. Very true, we can't turn back the clock (huge sigh). If only we knew back then what we know now! I can totally understand why you want to go it alone for your chemo session. Time for reflection and catching up on your CDs or surfing the net. No pressure.

    It's not at all selfish of you ...now's the time to do as you please and what you would be more comfortable with. Maybe further down the line you can compromise and have company at the start and end parts of chemo session. It's such a marathon chemo session ..it would make it more manageable for everyone. Definitely wouldn't want to get back home on the bike ....rush hour in Sutton is not my cup of tea. The car or taxi would be more like it. Do let us know how you do tomorrow. Will be thinking of you.

    Sue xx

  • Not selfish Annie, just caring. Not wanting to be a bother to anyone Best of luck with your session. Izzystep xxxx

  • Good Luck with your Chemo on Tuesday, Annie. Hope all goes well, it won't tire you out too much , and it does the trick.

    Love Solange

  • Dear Solange, Thanks for the good wishes. See my comment above for update on things. I'm in the doghouse with my daughters for wanting to be independent. Hey-ho. xxxx Love to you x Annie

  • Hi Izzzy,

    Thank you for your communication which started a wide discussion. Together with the choice of a chemo drug, this is such a huge dilemma! I dread having to face it in the beginning of November after a CT scan which will be a follow up of my last one in June.

    Please, keep us informed as to what you decide to do and for what reasons, if possible.

    I also take the opportunity to thank Annie for her detailed contribution on the topic.

    I have had problems receiving communication from HealthUnlocked and this morning I was very lucky to ask a friend to forward me her own communication and it proved to be of great interest to me.

    With many thanks for every contribution

    and big hugs as well as wishes for good luck

    Niobe

  • Didn't realise there was so many ladies out there facing the same dilemma as me. Also didn't realise I was opening up what is seeming to be a very interesting debate. There is so many views in the subject but I think each lady us an individual and do as she sees best for her. I will, of course, listen to my onc, but ałso to me and my body. I am feeling so good and can't bear to think of feeling like s**t once they start chemo again. I will let everyone know what happens after my 24th October appt. big cuddles Izzy xxx

  • Hi Ally. I had kidney function test before I started chemo. I was on ICON8 trial of weekly chemo so don't know if that made any difference. My last carbo/paxi was on 1st Feb and my CA125 down to 69. It has risen steadily to 1900. Due to severe abdominal pain lasting one week the onc ordered a CT which showed significant increase. I asked for Avastin and the onc said that I had platinum resistant chemo and that is one criteria, plus length if time since last chemo. The other was funding, so I told him that if I wasn't going to get funded I would make myself known to the highest of highs!!! Not sure if I frightened him but it appears to have worked. Ask for the criteria for getting Avastin and for what reasons you aren't. Keep asking the question also do as much research as you can into Avastin. Good luck. Please let us know how you get on. Love Izzy xxxx

  • Hello Ladies,

    Apologies, for not getting back to you all as I did not realise that there would be such a response to this discussion on recurrent ovarian. The contributions have been many, and it would seem that many of us are in the 'same boat'. Thank you to everyone for their views and experiences, and especially to Annie who is always a encyclopedia of knowledge.

    I air on the watch and wait strategy, providing you are feeling well, and there is minimum disease progression and likelihood of it not invading other organs. Treatment is such that it is so debilitating and if you are feeling well, I see not reason why we should go through this punishment any early than we have to.

    My new oncologist made me laugh the last time I saw him, as he said that I should speak to his registrar because I was more knowledgeable than her.

    I think the waiting game is a very psychological one for all of us, and it is tortures and anxiety levels go through the roof. My appointment tomorrow should be able to shed more light on my situation, and what options I have

    Apart from the recurrence, I also have the worst prognosis of cells as I have a mixture of clear cell, serous and poorly differentiated which are all high grade, and because clear cell is so rare they do not know much about how to treat it.

    I think also when you recur it brings back so many mixed emotions, and because it is then classified as a 'chronic illness' it seems more real than the first time round, and loved one's more or less expect you to pick up straight away, but it is harder. How can you explain how you feel, only someone who is going through the same can appreciate how we feel!!

    Will keep you posted on how I get on tomorrow.

    Good luck to Annie for tomorrow also. I appreciate the fact that you need a moment of reflection, as I think we all need this.

    Crack on.....I say!

    Love Janette x

  • On Janette, how I now what you are going through at the moment. I too am well but have reoccurrence in lymph nodes, getting bigger!! I watch with great interest in the shall I, shan't I, debate. I am due to see my onc on 24th and will have to decide (with her) whether to commence with the chemo. One added problem is that I am due to get Avastin along with chemo, but won't start in Avastin unless I have the chemo. Will I be doing the right thing in waiting? So damn confused at the moment....... Lots of love Izzy xxxxx

  • Izzy, a difficult decision I know whether to commence or watch and wait. When you see your oncologist on the 24th no doubt, she will look at progression, and cell type and advise you what is the best action. Unfortunately we are all different, so talk to her about your concerns. I think as long as you are well, why put yourself through the gruelling chemo, unless you have to.!!! I saw my oncologist today and am opting for waiting until I see where it is going, and along with levels of CA125! They should know more when they take a balanced decision, and pretty much I suppose they are the experienced personnel with regard to starting and delaying treatment. Let me know how you fair!!! Sending hugs janette xxx

  • Dear Izzy; I too received this unhappy news in the last couple days - all tumour sites have grown and it has spread to other areas. I have run the gauntlet since 2008 and now think I am down to the last drug Canada will offer which is topotecan. Since being very sick before the first surgery/chemo, I have always presented a healthy look to everyone. However, the last month I have had nausea, reflux and discomfort. I've had carb/taxol, then gemcitibine, and then caelyx and also, oopherectomy/debulking in 2009 and then in 2012 ostomy/debulking. The only thing was, I was blown over when I realized the organs are now being compromised. This puts a different spin on whether a person would wait for chemo or get it now (I feel the need, for myself, to get on chemo now). During all this upset I thought it would be just the cancer to fight, but now I have the ostomy and as well one kidney is not functioning. I also see the onc on the 24th - what a coincidence -seems lots of us are doing the "talk" on the 24th! Big cyber ((HUGS)) to everyone.

  • Oh dear, you certainly have run the gauntlet. I had no symptoms of OC at all. I presented with post menapausal bleeding. The first onc I saw reckons I had it for 2 years!!!! I had the debulking and had a colostomy. I think they are worried about my kidneys as I have had fluids n loads of blood tests. I think I have made my mind up on whether to or not to have chemo whilst feeling so well. I need to give myself every chance if kicking this in the butt!!!! Hope you get on well on the 24th. Please let me know and and I will post my own experience. Love n hugs Izzy xxxxxxx

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