Recurrences?

Hi everyone. Diagnosed PPC August 2010 stage 3C. I see here a lot of people saying they are having a second or third etc recurrence. I came out of remission December 2011 and it was explained to me that I would not go back into remission again. I have been on chemo off and on since with the longest break being this year when I finished oral end of feb. It is always stated that I am receiving palliative chemo. I am due for a scan and start taxol probably early sept. I was informed at the beginning that the longer you could stay in remission the better and I managed 13 months. Are you actually going back into remission or just having a settling of symptoms post treatment?

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  • Hi Chris,

    I am on treatment (chemo) for a third time now, I have been in remission twice... so please take heart... there are a lot of us on here that have had more than one recurrence.

    Best wishes love x G x

  • Hi Gwyn. I'm not worried just have never gone back into remission and have had four different chemo regimes and heading into number 5. The cancer is being kept stable at times. Feel reasonably well most of the time so hold off on treatment until I get too uncomfortable. Thanks for the reply. Chris

  • I have ovarian cancer Stage 3c. Nobody ever told me I was in remission. They did say there was no evidence of disease at the scan 6 weeks after my first lot of chemotherapy. My oncologist said I started to relapse 13 months after finishing chemotherapy and I have been told during the 9 months since then that I don't need further treatment yet. My disease is also described as a chronic condition that can be managed for quite some time if I have a top-up of chemotherapy periodically. My team seem to be most concerned with 'quality of life' and so long as I have that I shall hope to defy the odds.

    with love x Annie

  • Hi Chris!

    I don't think they ever referred to my intervals as "remission" just "symptom free" interludes! I was told from the start that this is not curable when diagnosed at the stage I was at but it is treatable and I should learn to live with it like any other chronic illness. I have been trying to do just that! Of course I am a lot older than you are and perhaps that helps me to be pragmatic. What's in a name after all? It is the effect that matters, as Shakespeare said "a Rose by any other name would smell as sweet" and whether e call it remission or a symptom free interlude the effect is the same. I am just coming out of my second and due to restart chemo in a few weeks. I am assured that it should buy me "a good few months" symptom free which is fine by me.

    Of course I am a lot older than you are so that might make it easier for me to be pragmatic but never think that increasing age dulls one's appetite for life! They will drag me kicking and screaming off the face of the planet following the advice of Dylan Thomas!

    Hears a toast to a nice long period of whatever we care to call it for both of us!

    Margaret!

  • The definition of remission is very vague, last year after 4th line chemo and subsequent scan the oncologist came in with a grin and said great news, your tumours have shrunk 30% come back in 3 months. I would,nt class that as remission, just time away from chemo because sure as eggs at the next clinic we,re back on chemo with evidence of progression. Love Paul xx

  • Hi Paul. This year after 3rd Line Chemo, just like you, I was told that the tumors had shrunk and to come back in 3 months. I wasn't really sure what that meant as obviously the tumors had only shrunk, not gone - so what would happen to them over 3 months? With my Onc I was chuffed with the result as he put such a good slant on it but didn't say much else and it was when I got home that I felt a bit short changed. I had presumed that I would have a scan before the next visit but I was told just to have a CA125 blood test. The last time my CA125 was very good the scan showed that the tumours had actually started to return. I dont believe that alone it can be a reliable test of recurrence. and so I have another month and a half to wait whilst wondering what is going on! Do let me know how you get on. Love Chris

  • Since then we had 5th chemo and after 3 cycles the scan showed stable disease but the CA had dropped to 18 which did,nt make any sense. The decision was to rest again but symptoms meant going back onto chemo 6th line, The CA was creeping up. A new scan last week showed a new spread but this is being used as a measure for the latest treatment. One concern is that the spread has reached a vertebrae, be interesting to find out if anyone else has this condition. Xx. Love Paul

  • Hi

    I was stage 3C and told that it was now a chronic illness I have had 3lines of treatment and between each course of chemo the remission word has never been used we always say respite .Remission depending on who you are can give some of us false hope, that the disease could go away for a long time some specialists are concerned they dont use the word. All I know is that this time I have had a symptom free time for 7months is has started to bubble again, but I have been given 3 months until Oct to decided what happens next. and told enjoy the summer! This will have been the longest time, which has been great, I have taken the time to enjoy, enjoy. Yes there are the nagging doubts round scan time, but I shall make the most of it.

    Regards Barbara.

  • H Chris,

    It is odd how oncologist use different terminology to mean the same thing. I have definitely been told on two occasions that I was in remission, the first time after operation followed by chemo had finished, then after a recurrence and my treatment finished that I was in remission again, I have never been told that I have a chronic disease, but was told that I have a progressive disease... being told I was in remission as far as I'm concerned gives me hope...and I feel I know where I stand...I know my disease is incurable, (I was told this only on friday by my GP) but their aim is to prolong my life as long as is possible...I was also told by my GP that I look fab (her words not mine LOL ) love x G x

  • Hi

    I always understood the term remmission to mean a time in which the cancer has, for whatever reason, stopped growing (without chemo), whether there is still cancer present or not. I gather remmission is always possible, under this definition, whereas the oncologists will never say cured, as this cannot ever be guaranteed.

    Chris

  • My consultant said he refers to no sign of recurrence and would consider remission to be after five years. Which seems ages. So it seems very consultant dependent, and area dependent too, as to how they describe it.

    LA

  • After five years with no recurrence it is considered a cure (not remission)

  • That's what I was told. If you get to five years you are considered cancer free. It's not a big deal this question I asked, I know where I am at. Feel good. Life is great. Grandson turned 5 today. I work in our emergency dept and some of the people who live lives with self inflicted problems that come in just remind me how much I would rather be me even with cancer.

  • And a few words of hope on that. My sister has had 3 different aggressive incurable cancers from the age of 27. She has on more than 1 occasion been disease-free for over five years with breast cancer and non-Hodgekins's Lymphomea. It just shows it is possible to survive and live a long time with incurable cancers. Love and hope to you all. xxxx A

  • Its a shame that consultants and oncologists are unable to use the same terms.Singing from the same hymsheet. without having to be so careful in what they say unfortunately I suspect they have a greater fear of the other C word

    compensation. It would make life so much easier for patients. It just show by the post the different variations .

    Regards Barbara

  • I rather think they use the words that they feel best manage the individual's expectations and communicate the message in a way that works for the patient. I'm OK with that difference. It reflects the individuality of each patient. xxx A

  • Yes I think that makes sense.

    Regards Barbara.

  • I'd just like to say that like Gwen I was told I was in remission after surgery and end of treatment.

    I was also told that they hate to use the term "All Clear", because one can never really be 100% sure about that.

    I was also under the impression that an all clear would never be stated until after a 5 year remission. I understand the word remission meant, no evidence of disease or change in tumor growth, in which case can sometimes suggest the disease is dormant/sleeping/none active.

    My diagnosis was a 2c even though it had spread to the bowel and omentrum and appendix. I am still a little confussed about the 2c stage as I thought it would be a stage 3 once it had spread but they tell me it was still contained within the pelvis so therfore its still within a stage 2 (well, only just). My oncologist has always stated that they arehopeful for a cure unyet all I keep hearing from everyone on here is there is no cure for this type of cancer. It doesnt exactly keep us in a positive frame of mind to tell you the truth.

    However, compared to most of you I feel incredibly blessed and id like to tell you how amazing you ladies are and Paul for always joining in with our threads.

    I pray for you all every single day, in the hope a miricle will happen. I really don't know how I would cope with a no cure or terminal diagnosis. You ladies are going through so much and its constantly with you.

    I have never heard terminal cancer being referred to as a chronic illness. I have fibromyalgia and chronic fatigue syndrome, they are classed as chronic illnesses, I always understood a chronic illness to be none progressive. I must have this totally wrong.

    In my oncolgist letter sent to my GP after end of treatment it stated that I had been made aware that in the case of recurrence, pallative intent would be offered. In other words there would be no cure and pallative intent means to improve quality of life.

    I think all we can do is ask, when we are unsure about anything.

    Love to you all - keep fighting xxxxxxxxxxxxxxxxxx

  • Hi Tina. That's what I have been having since last jan. every treatment I have is palliative for my relapsed OC/PPC. They are keeping me alive as this is a terminal disease in my case. I have a friend whose brother has a renal mass with mets in his lungs. They put him on oral chemo to try and shrink the tumours before surgery and his chest X-ray showed last week it was working. His oncologist who is mine also told him that five years ago they would not have been able to help him. So there you go. The onc put me on citalopram for the chemo induced flushes which is known to help but when they eased off and he said I could come off it I didn't as its an antidepressant and I have been forever happy since I went on it. He was fine with that. Good to read everyone's posts. Thanks for yours. Regards chris

  • Hi TinaW, (added W because there are two Tina's)

    I think your understanding of what you've been told is spot on, and I hope your cancer will never return, (this is a possibility) It must be difficult not to worry when you also have other conditions which confuses issues.

    I also think your understanding of a chronic condition is spot on, and although there is an attempt by oncologist to say OC is a chronic condition (the fact of the matter is it is not) my sister has type1 diabetes she has had this for over fifty years there is no comparison between diabetes and cancer, but I feel it is an attempt to make cancer more acceptable (ie of coming to terms with the diagnosis) Yes the treatment they give now is to prolong life, when in the past it wasn't the case, but in my view "chronic" it is not. (please note my view)

    Love x G x

  • Hi there...

    My consultant told me that the word remission isn't used in oncological circles any more other than for certain types of childhood cancers. She said that there are four outcomes to treatment - a full response, a partial response, stable disease and little or no response. I understood that a partial response is applied when the measurable tumours look like they've reduced by 50% or more but I could be wrong about the percentage. So basically, it's how much the tumours have shrunk by and how fast they grow after treatment. So, although the tumours may be growing very slowly post chemo, the response may still be seen as stable disease. The word remission brings hope though because it's as if it's all gone away and I suppose in some cases it might do ... I've no idea. My disease, however, isn't going anywhere, but I'm very glad it appears to be sleepy at the moment. It's still there but reduced and although there's measurable growth, the rate appears to be slow. I have my next appointment in a few weeks and I suspect I might have to have a scan because I've lost weight since the last time I visited. It's a bit odd how we're all given different information isn't it? Love Tina x x

  • And even before my first treatment, I was told that I would be treated palliatively ... which means that there is no hope for a cure for me. Palliative care from my understanding is a position where the medical team seek to halt any progression of the disease and to make the patient comfortable by prescribing pain and other medication and by carrying out procedures such as the draining of chest and abdominal fluid. The longer they manage to put this illness to sleep the better because I really believe the cure is only around the corner for all of us. Love Tina x x

  • Hi TinB,

    I think that your particular cancer would be treated with palliative chemo from the start as don't you have peritoneal cancer ? which although treated the same as OC it started on the peritoneum (not on or in the ovaries or fallopian tube) which thinking about it when it starts in the ovaries often progresses to the peritonium (if it hasn't already) and at that point treatment is palliative.

    I don't understand your oncologist saying that they don't use the word remission having been in remission twice and told that, but I think what your oncologist meant he or she don't use the word remission ( yet another case of someone speaking for others ) it is a bit like my oncologist said that he never uses the word terminal unless I only had about three weeks left (well I hope he never uses that word to me then LOL) but I am sure other oncologists use it in a different context and possibly don't mean three weeks.

    Love x G x

  • You're right Gwyn when you say that they won't use the word terminal except when it's used against a strict set of criteria and I think this is because insurance companies and benefits agencies have their own set rules. Plus, nobody really knows this disease in full because it's so complex and it's a set of diseases which manifest themselves differently in everyone. Like Annie has said, people can live with this illness for a very long time. Love Tina x x

  • Hi, my life insurance company says that terminal to them is 12 months or less and they will pay me out and if I live longer its a bonus.

  • I'm with you on a cure round the corner Tina. I intend to live, and if necessary to die, with that hope. xxx A

  • Amen to that Annie! x x

  • Hi there

    Interesting thread..........just to say though, that I have (had) ppc stage 3c and at no time has my treatment been referred to a 'palliative'. I had 3 chemo, op and 3 more chemo sessions. I finished treatment in October 2012 and so far, so good. All good wishes to you Chris..........and everyone else. Marvellous lot we are, blooming marvellous! x

  • Hi Sue (cerise)

    They don't always tell you this... (or you might have missed it) but they circle the top of the chemo form you would have a copy (a blue one) the form would be the same as mine as I was at the WHL when I was first diagnosed but I now go to Clatterbridge the form has options for the oncologist to circle - treatment intent - Neoadjuvant - Adjuvant - Curative - Palliative - so one of them would be circled, because it is a copy of what you have signed up for and it covers the medical profession, in that they have explained everything to you (Your signature indicates you have understood) but a lot of people miss the circled area at the top of the form. It will indicate this though.

    Love x G x

  • Yes, when I signed the consent form, the doctor circled palliative in my case and that's when it was explained to me, but as you say Gwyn, there were other outcomes to circle too. I was looking for my form this morning, but it's at the bottom of who knows where! Love Tina B x x

  • Hi TinaB,

    The fact they have curative written on the form, says to me that when found early enough it can be cured contrary to what some people say, I have three forms now and they are all in front of me as I keep them in a little plastic folder.

    Love x G x 8-)

  • Yes Gwyn which is the thing that upset me so much at diagnosis because I'd already had a huge cyst removed and my doctor didn't tell me that some of my bowel was taken out at the same time because of 'suspicious tissue'. I wrote to the hospital asking why it had been taken out (horrid for a patient to have to do that to get answers) and that's when I was told. Nothing was made of it all so when I started to get the signs of PPC, I wasn't thinking of cancer at all because I thought I'd made too much of a fuss in the first place. Had I been aware of what to look forward, I'd have gone to my doctors with questions and gentle demands for action. As it is, I went to my doctors and was sent away when from my perspective now, it was obvious five months before being taken into hospital that I was already at the later stages. I've come to terms with it all now (sort of after help) and most of the annoyance and sadness in that respect has disappeared thank goodness but it seems such a wasted and tragic wasted opportunity. Love Tina x x

  • Hi Tina,

    That's terrible- I would find that so difficult to cope with/accept.A really sad story but unfortunately not as uncommon as a lot of people would think.

    Anne x

  • Hi TinaB,

    I am wondering how you was diagnosed with PPC, this means your Primary Cancer started in the peritonium, but you say you had a cyst removed, then showed signs of PPC afterwards, didn't they tell you this on your histology report? after your operation because they can tell when they've done that report where your cancer started.

    Either way, you have been treated badly though, to be so dismissive over what you have is terrible, (but like Anne says not uncommon) sending you my love and best wishes x G x

  • It's a long story Gwyn so I won't go into it all here too much but I had a cyst removed. I had 4 hospital stays of each around 2 weeks.. so 8 weeks in all. At the end of the last stay, I told my hospital doctor on the ward that I thought I didn't just have a blockage but that something else other than twists were causing it. I was sent down for an ultrasound (yes, it took that long) and they found a cyst around 6mm, so they said I ought to see a gynae who despite a further 2 days in hospital, failed to turn up at the ward. (The hospital is on 2 sites) I was told the wait was 4 months and discharged but on my appeals, the gynae agreed to meet me the next day on the ward. I then was made to wait 6 months for the op. My employers weren't happy that I couldn't work during the wait and the episode signalled my fall from grace at work. I asked the doctor if I may have cancer because I felt so tired and weak. He said he'd do a CA125 test but then the nurse in the room interjected that the cyst was so large that I'd have been dead so there was no reason to think it would be. When the results came back, I was in the normal range for the CA125. When it was removed, I was 17lb lighter after the operation. The cleaner thought I was heading for the birthing pool when I arrived waddling, husband in hand and holding a little case. During the op, some small bowel was removed because it was 'suspicious tissue'. When the cyst was drained and cut out, it was found to be a benign cystadenoma but the fact that it was stuck to everything around the abdomen and had to be cut out gently and it was also attached to the 'suspicious tissue' suggests that I also had other things wrong with me. No biopsies were taken of the peritoneum and the lab report just says 'suspicious tissue' for the bowel resection tissue. (Not very technical is it!) It turns out that I have a rare form of the disease which is slow growing and isn't signalled by the CA125 test at all. I can only say that I was a distressed individual from then up to the time I was finally diagnosed. I have managed to put it behind me by trying to forgive the people who did this to me because their intent wasn't to hurt me. Some surgeons are very arrogant but I have accepted that part of the criteria for recruiting would be surgeons is to see that they have an absolute belief in themselves. Self-doubt isn't something a person would want in a surgeon at all. Anyway, this is a short synopsis. Horrendous really but I'm so glad that, with help, I've been able to live without this monster of a memory filling my head too much.

  • Dear Tina

    What a story.I cannot imagine the stress and anger this must have caused.

    I am glad that you say with help you have been able to put a lot of it aside.

    I think I would find it very difficult.

    Anne x

  • Hi Tina,

    What a terrible time you have had, such incompetence is hard to believe, it is a good job you persisted, it must have been so hard, it also highlights how diffirent we all are,thank you for sharing this which must be so difficult for you to do.

    Much love x G x.

  • I thought Cerise is Sue. Help!

  • Oops ! Haha ! well spotted Annie (your spread sheet is working) LOL cheers 8-)

  • Hi cerise.

    You are quite right. See my comments in my general reply (not this one) below. The first treatment is with the intent to cure. I have PPC myself (see my profile). I take an anti-inflammatory pill, celecoxib,regularly, as an anti-cancer agent. If you see my blogs, you might consider it worth trying. I am a retired GP, and have looked into this very carefully. Cancer Research UK are trialling anti-inflammatory drugs, in fact celecoxib in a variety of cancers. Aspirin is also being used in trials. They work the same way. I have detailed the references (from cancer research uk) in my blogs. I would recommend though always taking omeprazole if you take aspirin or an anti-inflammatory and discuss it with your GP and/or oncologist.

    All best wishes to you. I know, I think the ladies on these ovacome blogs are marvellous.

    Love,

    Eileen xx

  • Hi Eileen,

    I thought the first treatment was intent to cure yet written on my chemotherapy form was 'palliative very slim chance of cure'.

    When I went to see the registrar after chemotherapy and said my ca125 seemed good she muttered something about my care being palliative which left me feeling very hopeless at this stage.

    At my last visit to consultant he said I was someone who had done better than expected and response to treatment was good.

    That was the first time since diagnosis that I felt some hope.

    I try to be pragmatic but it is very difficult sometimes .

    Like everyone here I worry about recurrence and although it may not work I feel the aspirin is something I can try myself and have some control over.Like you I researched it fairly thoroughly.

    Best wishes

    Anne x

  • I think the only explanation is that every single case is so extremely individual. When you think how many different types of cancers for each organ and then we all have a diagnosis with an origional different stage and grade, it hasto be individual.

    I can not believe how quickly and suddenly things are changing now. For example, 2 months ago I questioned why I could not take the tamoxifen drug to lower my risks of breast cancer. I was told only a matter of weeks ago that in this country they do not offer this to women with the faulty brac gene. Now, only weeks later they now do, do.

    Research and such like is changing so much now, we can't keep track on it.

    Of couse this is wonderful news, but unless we keep on track of latest change it can be rather confussing.

    I'm not sure how many of you believe in miricles? How many have faith in prayer? How many believe in the after life? I'm not sure what I believe but I do pray and I do talk to an imaginary spirit, I talk to someone through my mind and the answers seem to soon become clearer. It may just be pyscological but it seems to help me deal with things. I have never had counselling but in my own way, talking to myself about feelings and emotions really has given me the strength to get through. I have huge desions and roads to travel in which I'd rather not face, but needs must and I have come to terms with the facts that prevention is better than cure. I think of my next step to be a serious life saving challenge but I always worry about reoccurance of ov cancer.

    It has been unbelievable how many friends and friends of friends who have had breast cancer diagnosis since that of my own ov diagnosis and three people have been diagnosed and died since my own cancer. Its one very big scare for everyone these days.

    The good news we have more hope than anyone did ten years ago. Lots of love to you all from Tina W xxxxxxxx

    Al

  • Hi

    this thread has shown us all the different approaches to our illness as to how we have being told of our illness wouldnt it be good if there was some clarity, I for one and I am sure others would appreciate it. After my operation, the consultant came in and told me he had it all or as much as he could see to the naked eye.

    Then at my follow up, the term he used was chronic.. Now for me I thought we had gone from OK to Chronic, but as I have had R/arthritis for over 30 years I thought great I can cope with Chronic. I am fortunate that the word pallative or terminal have never being mentioned, up to now for which I am very grateful.Mine as I have mentioned before was a stage 3c.

    Regards Barbara.

  • Hi all,

    I have my form and 'palliative' definitely isn't circled. It is weird reading the form again as I have, so far, responded better than expected................and long may it continue!

    Sun has returned here, hope it has with you all so have a lovely day! x

  • Hi Sue,

    What did they circle then adjuvant ? Love x G x good news though x

  • Hi Gwyn

    It has Neoadjuvant circled which I think just means chemo first to shrink tumours - which thankfully it did!

  • Hi Sue,

    Yes it just means it is given before surgery, where adjuvant is given after surgery.. I enquired at the time what it all meant (on my first chemo when I was first diagnosed) love x G x

  • My gynnie nurse has told me that the chemo has put the cancer to sleep temporarily. It will wake up one day but don't know when. Think for me this is a nice way of looking at it, one I can cope with, but don't like feeling of not being in control of it either!

  • Hi Chris.

    Even PPC, which is by definition stage 3 or 4, can be cured with surgery plus interval chemo, though it is 20 - 25% survival at 5 years for stage 3 and 10% survival at 5 years for stage 4, like OC. I think though that if it recurs, then all further treatment is labelled "palliative", or that is the case for almost everyone, to my knowledge. But strange things including apparent miracles do happen, where the disease just stops in its tracks, and even the oncologists admit they don't know everything about this disease, and so I would recommend never giving up hope, as scientific advances are being made all the time, slowly, I must admit, but they are happening. See Whippit's comments about her sister, above.

    I have PPC myself, and you can see from my profile and blogs that I have been quite fortunate so far, though who knows what tomorrow will bring. I have had one recurrence, and have been well with a normal CA125 for the last 28 months. As you may know, I am a retired GP, and so know about this disease from both sides of the fence.

    All best wishes to you, Chris.

    Love,

    Eileen xx

  • Hi Eileen. I think things have gone really well for me over the last three years and am still trying to get used to work colleagues telling me how well I cope and how I always seem cheerful etc. is there a certain way to act when you have cancer? Maybe it's just my temperament but I have never got really down as like I have said before there are a lot of worse things that can happen. On diagnosis I was staged 4 as I had retrosternal node but then they changed it to 3. 3chemos surgery. Then 3 more rounds and my CA125 came down from 1800 to 27 with no evidence of disease. After surgery they sent me a copy of the pathology report which said it was PPC. That made sense when I thought back to my symptoms which I fobbed off as age, being hypo thyroid and menopausal. Could not ignore the as cites though. As a nurse I find learning about this cancer quite interesting and the nurses in ed where I work have learnt a lot as well. Does that sound weird? I am feeling uncomfortable at the moment so will be interesting to see what the scan comes up with. My feelings are usually spot on. Time frame given to me by my onc doc was 3 to 4 years from time of relapse but she thinks more like three but emphasised no one really knows. I asked her! I don't live like I only have that long but I wanted to know. My three year Anna of diagnosis is in 11 days and am doing great so who knows what is ahead. As long as I don't get hit by a bus. That would really make me angry. Best wishes. Chris from good old NZ

  • Mine is circled as curative, but I don't think it inspires confidence because they can change it at any time.

    Interested by the hypothyroid though, as I am too and have been reading a huge amount about the connection between the two.

    LA x

  • Lily -Anne they only change it on a recurrence, so if yours was circled as curative that is what it was, curative means that was the point of the chemo they were giving at the time, ( i.e. they were giving you chemo with the intention of a cure so it doesn't change ) and should fill you with confidence, I am sure that there are many that would settle for that... There is no point in jumping ahead and thinking the worse, there are many people on here that the cancer has never returned. Love x G x

  • Yes.. I agree with Gywn. I know it can change any time but to have that at diagnosis must mean that it's possible and very likely. I hope that very much for you Lily-Anne and if I were you, I'd grab life with both hands and jump too. Even skip because it's like being given an impossible chasm and sliding across and being safe. I know there's a possibility of recurrence and that's real and hard but it's a little bit of freedom which is a beautiful thing. Love Tina x x x

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