Hi, this is my first post since finding this forum.
I have Stage IV high grade serous primary peritoneal or fallopian tube cancer, discovered when I presented with Pleural Effusion. I've posted a few comments on other's posts but not written my own. Since my diagnosis in October, I've just trusted in the Oncologists (I have two an Oncology surgeon and a Chemo Oncologist) and done what they have said will get the best results. I'm very lucky in that we have great private medical insurance thanks to my husband's job, which meant that I started chemo within 2 weeks of the cancer being discovered, however it also meant it was a bit of a whirlwind, and a bit like a bad dream.
I made the decision not to google or look at anything online, as I didn't want to read stuff that might make me feel down. However in the past few weeks I've started to look at a few websites. There is a lot of stuff out there about how bad chemotherapy is for you, and since I started reading about this I've found myself feeling more and more frightened about the future. I've also not really asked questions about my chances as I'm scared of hearing the answers. All I know is that they've told me there have been big advances in the treatment of OC and that they feel confident??
I've just finished 8 sessions of chemo, and had weekly taxol, with 3 rounds of carboplatin, and 2 of avastin. I'm due to have my surgery the 2nd week of January and then will restart another round of chemo.
I've been reading lately about how chemo can actually cause cancers, and all sorts of other long term illnesses, and that people have cured themselves by eating a specific way, ie juices, vegan, alkaline etc
I'm not brave enough to say no to chemo, but then start to beat myself up for going down the conventional route of doing as I'm told, and just TRUSTING the Oncologists. Does anyone else feel like this? I keep kidding myself that I'm in good hands and I'll be fine, but then I start to think this has already spread, I'll never be fully rid of it, and I'm being ignorant.
Has anyone else felt like this? Or have any thoughts on alternatives to chemo? Or even thoughts about doing stuff to help alongside the conventional treatment? Any reassurance would really help at this point as I'm feeling quite low today, and isolated x
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I've been feeling similar to this since being diagnosed stage 4 PPC since sept. I'm also due debulking 2nd week of jan.
I have bought nutritional books, but my consultant has advised me not to partake in any limiting diets prior to surgery. So for me, it's something I'm looking into after my treatment is finished.
The best advice I've had so far and which I tell myself every day is, I am not a statistic. That doesn't mean I'm not scared, but I have faith & hope.
im sure many of us on here can all relate to your thoughts. Best of luck xxx
thanks Jessica, it's good advice, and I've been pretty upbeat until this last week, maybe because I've reached the end of the chemo for now, and am starting to think about the surgery, and next steps. x
The way I think about it is that, although chemo is toxic, at the moment it's the gold standard and effective. I think beating yourself up about the whys and wherefores is a normal reaction as is worrying about the future. You'll find lots of friends here who've had or have those feelings.
I try now to live in the day which is what I hardly ever did before diagnosis. It's what has helped me the most apart from deliberately providing myself with distractions.
I'm sorry you're feeling confused and sad but sending you love and many hugs. Xxx
I think your feelings are natural. Chemo like other drugs have side effects the data available is for those treated with various combinations there is little research for those who choose not to have chemo as it is rarely refused. I'm not a chemo fan it's a poisonous chemical and I'm a bit anti putting in what you can't take out. I have had chemo but didn't complete the treatment
You have to be careful of extreme anti chemo sites as there is little evidence to support for example juicing.
Ovarian cancer represents differently in everyone making it difficult to treat as one size fits all. An open mind and a healthy diet is in my opinion the best way forward
Lily, I think you're so brave to not complete the treatment, I don't think I could do that so easily although I do believe in eating well, so I guess I'm going to try and do that alongside my treatment plan. How are you doing currently? x
I recurred in Nov 2015 I'm stage 1C and had surgery to remove pelvic tumour and had stoma at same time. I had 3 rounds of Carboplatin but I was very unwell and dropped out. Scan in Oct was NED next scan is Jan. Taking vitamins and will be mega dieting in the new year for hernia repair.
I have just come back from my post op appointment with both my onco surgeon and chemo consultant. I can only say that for me the chemo was very tough going but had the required effect. The biopsy results on the tissue they removed for examination during the debulking op show that the chemo killed the cancer and left scar tissue behind, which is brilliant for me and the best result I could have hoped for with my diagnosis.
I agree everyone is different but would say that to fight a responsive, manipulative and deadly foe like our sort of cancers you need a pretty tough weapon, and chemo plus the other things such as Avastin are what we currently have which can try to do the job. Not great, not easy, not what we deserve but we are where we are and to my mind juicing is nice and helps us feel good, not a front line response to the stuff we are up against. Just my opinion.
I hope you feel you can make the right choice for you and wish you all the best. Someone will always be here to offer advice and support...
Netti, I think actually I've been pretty lucky with the chemo so far, and got off lightly re the side effects. The worse has been Mouth Thrush and a bit of fatigue. My initial reaction was and probably still is, that I'm doing the right thing, but you have these moments of doubt, and question yourself - well I do anyway, and I wonder if I should just trust in the Drs, but I think you are right in that it probably needs chemo to kill off what it can. Thank you for your reply and the reassurance I appreciate it x
I can totally understand where you are coming from regarding the worry & probably most ladies here would say the same thing. I think part of it is fear of the unknown even though we are advised about the various treatments it is still scary.
I had endometrial cancer which was classed as 1b,prior to my hysterectomy,but then afterwards they found that it was in one fallopian tube aswell so stage was 2 & grade3 serous. I only had 4 cycles of chemo carbo/taxol,followed up by internal radiotherapy. I finished my treatment in April & although I felt tired I did not feel to bad considering. Like you I have taken the advice of the Gynae/Oncologist, & so far do not feel to bad. I do have a bit of neuropathy in my toes,but I can cope with this. Everyone tells me how well I look (I normally respond saying,looks can be deceiving. ) I try not to look to far ahead ,although our grand-daughter is getting married August 2018.so I am hedging my bets for that. Once I knew that I had cancer,i did try to look towards my grandson's graduation in Bath,& thankfully I made that,then in Sept.our son got married & I was able to leave my wig off for this event,which I was really pleased about.
Try to have a little treat now & then as this is a great moral booster. The other thing I did was to try & walk everyday as I felt getting out in the fresh air did me a lot of good,even if you do a short walk. Have a coffee with friends etc.
Regarding diet,i have always eaten good food,& fortunately I was able to maintain this whilst on chemo,but I have decided not to eat so much red meat/so I eat chicken,fish, 2 red meat days a week, & 2 vegetarian days. It would be great if we could buy organic but this can be expensive of course. Like you I have thought of all sorts of things, & sometimes wonder how I got this dreaded disease in the first place as there has been no cancer on either side of my family,so is a mystery really.
I do try to sat away from Dr Google,& statistics mean nothing as we are all different,plus as you have said yourself there is a lot of advancement in ovarian cancer.
Try to stay positive & take a day at a time if you can. We all have down days, & think what if, I know I do. I have to have faith in my Oncologist as they are the ones with the experience.
Take care & try not to worry to much,as there are lots of ladies here that have been through or who are going through the same as you. We are all here for you.
Caleda, thank you for taking the time to write such a comprehensive reply. I think you are right about it being the fear of the unknown. I've tried not to think too far ahead, or even at all to be honest, and just focusing on one day at a time, but it's very hard when you have tough days. Your advice is very sensible and I will try and take heed of it.
I didn't think when I was first diagnosed that I needed a support forum/group like this as my family and friends have been wonderful, but it's difficult when you have down days, and actually it's an utter relief to find this space where I can offload and say stuff I can't share with my family, or want to protect them from, as they are worried enough about me.
Am glad that you have been able to celebrate some of the special occasions in your life, like your son's wedding.
I had my TAH plus in April of 2016. I felt the same way as you but also I felt like cancer was my enemy and all I could say was that i want that tumor out of me!!!!! i felt so much better knowing that my ONC got all visible signs of cancer out. Optimal debulking is ideal. I had my surgery first as my tumor was so big. he also took out my omentum and appendix and a couple of lymph nodes to biopsy. I had the full cut.
I started chemo about 5 weeks later. My doc says everything in moderation. There is no scientific proof that supplements help, not eating red meat helps, etc. etc...... I really feel that a lot of how you do is in your head. Knowing that you can beat this beast is very empowering.
Check out the website of Penny Brohn UK a charity in Bristol who run courses on Living Well with Cancer - diet, exercise, mindfulness, relationships, taking control yourself. The chemo saved my life, but I needed this side of things to keep me on track
I think my health insurer mentioned Penny Brohn but I haven't looked at anything to do with it yet, possibly as I wasn't ready before now to seek alternative support outside of my family and friends. As things happened so quickly for me, it's been such a whirlwind, and still doesn't feel real sometimes. I presume everyone feels a bit like this x
Hi, I understand how you are feeling. There are so many people willing to tell you that you should eat this, juice that, don't eat this or Thatcher's etc. My own personal feelings on the matter are as follows:
1. If treating cancer was a simple matter of the food we consume, our Consultants would be giving us that diet to follow.
2. If it was that easy why would so much money be spent by the NHS on the chemotherapy drugs for us?
3. We have to have faith and trust in the Consultants that treat us. They would not be giving us these drugs if they didn't believe that they would work.
4. There are quacks everywhere but I would Imagine when push comes to shove, they would be first in the queue for the chemo if they were diagnosed with cancer.
Eat well, be kind to yourself including your mind, follow the advise of your Drs and stop beating yourself up. Try and enjoy Christmas. Ann x
Yes! In fact I think that is what triggered me going down this path, I've got a few vegan friends who started posting links to various sites, and talking about Alkaline diets and so I started to question myself. It's hard sometimes to ignore it, but I think I'm going to having to stay strong and listen to myself and what's right for me.
Hi Sarah I completely understand and relate to your ambivalence about chemo and your trust in your Oncs. I have stage 1c and was given chemo as an insurance policy (following surgery - total hysterectomy, etc), even though it's not so effective with my kind of cancer, clear cell. Everything happened so fast, that I didn't have time to find out more about chemo and question it until I was having it. A year down the line and it's much clearer now for me, that if I hadn't followed the recommendation and have a recurrence, then I may very well be annoyed with myself for not having had it. After all, despite the toxicities, it's the only treatment that's evidence-based. What I have done since treatment is to have Chinese medicine, to help build my body up again and to achieve homeostasis for my body to help prevent recurrence. I am more careful with my diet, but not fanatical, I generally drink 2 litres of clear liquids daily & am on an exercise programme. I was made redundant, & so am in the fortunate position of not having to work, as I personally feel that stress levels make a contribution. We're all different and have to find our own way with this. I do also speak to the doctors and nutritionists at Penny Brohn, and am part of a creative writing group for people with cancer, which I find helpful in processing thoughts and feelings around the cancer. When I'm worried or need to talk things through about cancer, I ring Macmillan or the Ovacome nurse, and have also had a few psychology sessions, which were particularly helpful at the end of treatment. You might want to read "Radical Remission", a book about people who survived cancer against the odds - I found this inspiring. For me, one the most important aspects of my recovery has been wanting to benefit others affected by cancer, so that my suffering from cancer isn't meaningless, but can be used to help others. So I'm supporting friends I've met on this cancer journey as best I can, and have a couple of project ideas which I've already discussed with the Penny Brohn Centre that I'm hoping to start work on in the new year. Wishing you the very best, Sundra xxx
Sundra, another really positive and inspiring reply, everyone has been so wonderful relaying their stories, I really do feel much more positive and upbeat today thanks to reading them all. Thank You xxx
PS Part of my process in not wanting to continue with chemo at the time of having chemo, was about trying to take control of an uncontrollable situation. I felt so helpless & really wanted to take some control back. Doing lots of reading about alternative treatments, etc, & contemplating giving up chemo was all part of this psychological process for me. There is evidence that receiving a cancer diagnosis is psychologically traumatising, however, the psychological side of the illness is rarely addressed. The fact that you're challenging the status quo at the moment sounds very psychologically healthy. I hope this is helpful.
Grace, yes, it's important to feel like you/I have some control. For me I have been trying to get to the gym when I can, and whilst this has been less that I'd hoped, it allows me to feel that I'm doing what I can to help myself, as well as stick to fingers up to the Cancer!
I agree re it being psychologically traumatising, and I think one of my struggles is, that once you have that diagnosis no-one tells you how you should 'be' if that makes sense. It's such a life-changing thing, and from the minute you walk out of that room you find yourself in a surreal reality, that is difficult to make sense of, and I think I've actually spent the last 9 weeks trying to figure out what my 'new normal' is... xxx
I completely understand what you're saying about how to be with this life-changing thing - & it's different for everyone, & it's a process & takes time. Sounds like you're doing really well with it all - it's not easy. One thing I learned was how much pressure I put on myself to do things, to get healthier, to have processed my experience, to manage well psychologically, etc, & then beat myself up when I fell short. I really needed the psychologist to encourage and give me permission to go easy on myself, to focus on things that nurture me and to be kind to myself. Walks in the countryside, lounging with a good book, a special day out with a good friend, etc, & being patient and gentle with myself were, and still are very important for me. Our bodies, minds and hearts need nurturing, love, gentleness and kindness to allow the trauma to pass through. I personally found face-to-face support groups (through Maggies, Macmillan, Penny Brohn, etc) and friendships with others affected by cancer invaluable - not feeling alone, we're all in this together. You'll find your own way with all this. Be patient and loving with yourself. & of course, there's always this wonderful forum with wonderful women too. Wishing you the very best xxxx
I was diagnosed stage 4 ppc in may 2015. Admitted with a complete bowel obstruction. Prior to diagnosis I was a fit, healthy 62 year old. Ate healthily etc etc
I had chemo within 2 weeks. I believe it saved my life. The horrible ascites disappeared, and tumour levels reduced.
I have a recurrence at present and back on chemo. I try to eat as well as I can and walk etc as much as I can.
I know the chemo is a poison, but don't feel alternative therapies could get me the remission I would love.
Am sorry to hear you've had a recurrence Judy, I too was fit, & eating healthy beforehand. I do think that helped me in many ways. Here's hoping your chemo goes as well as it possibly can & wishing you a happy Christmas x
Just my .02 on alternative therapies. The only thing I have employed so far, in addition to the therapy plans devised by my oncogynecologist, is diet, but there are others I will probably try as well. It has been pointed out that there is no scientific evidence that alternative treatments are effective against cancer. But I am not expecting any alternative treatment to treat cancer directly (if it does, hey, great!) I am eating vegan, and also eliminating sugar and refined flours, in order to strengthen my immune system--and there's plenty of scientific evidence to support that. I also feel that the mental, emotional, and spiritual aspects are important to health and fighting disease, so anything that I can do that will benefit me in any of these areas of my life is also a plus in making me feel there are some things I can have some control over.
I think that it is only a good idea to work with Dr. Google if you are able and willing to really learn to analyze the likely reliability of the source (when was this study done? where was it done? Is this report written by a participating doctor or by an outside observer? Is the tone suspect in any way of seeming glib or overenthusiastic?), and to follow the deductions of the scientists themselves and not just the summarizers who so often oversimplify things. It may be a bit easier for me to approach medical journals because I've been an academic all my life. but this language is all new to me. I spend a lot of time tracking down unfamiliar terms. Yet it leads to great conversations to my onco when I ask her about things I've read.
One of the worst things about this disease is the uncertainty. It's hard for all of us to come to terms with. And probably we all do better some days than others. My cancer responds nicely to treatment, and then comes roaring back within a few months. I believe completely in my onco, but she may not have always made the best choice. She would be the first to admit that the individualistic ways our bodies handle this stuff makes it impossible to predict some things.
I pray that you will find some measure of peace, especially for this emotionally demanding season.
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