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Hi Suet and everyone,
I have a fabulous oncologist on Sunshine Coast, thank heavens, and I think the answers are often vague because there is just bugger all information on this crappy disease because there hasn't been the research yet. However, I always show up to my appointments/treatments with a list of questions on my phone and ask him point blank and keep asking until I get an answer. He is getting used to me. :) I'm very proactive because, hey, it's my body and my life! But he is also very honest in admitting when he just doesn't know the answer which, unfortunately for me, is a lot of the time because I have all kinds of other complications.
Anyway, hope this helps. BE BOLD is my message. Even obnoxious. grin
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I found talking to the hospital Oncologist helped. Also being proactive and availing yourself of any suitable drug trials. In November 2013 I was diagnosed with stage 4 Ovarian Cancer at 54 years of age. The tumour was on my left ovary, cancer nodules on my liver, cancer cells in my right lung with 1.5 litres of fluid. CA125 was 900. So I had a full hysterectomy, momentum removed and fluid drained from the right lung prior to surgery. Following this I had Carboplatin and paclitaxel chemotherapy for 6 months. This all worked well and put me into remission. 3 weeks later I managed to get on a drug trial of a parp inhibitor. This has kept me in remission. I carry both BRCA 1 & 2 mutated gene. However drug therapy can work for other ladies who don't have the BRCA genes. If you have a strong family history I would highly recommend you have genetic testing. Your GP can give you a referral to the genetic clinic. It is just a simple blood test and paid through Medicare if your family history is cancer affected.
The main advice I will give is to stay right away from negative people!!! This would send me into depression for the day in the early stages of the disease by comments people would make. As the psychologist said it is a fear within themselves which makes people avoid you or say I hope you are going to be alright in a stern manner. Remember you are an individual so do not🙂 dwell on statistics. That can be a downer and you may be in the good part of the stats!!!!! Live in the moment and do not stress about the past or the future. Today is to be enjoyed and we can all only live one day at a time. Practice mindfulness and meditation . Do something nice for self care each day like a walk, having a coffee and virtual catch up with a friend on face time, reading a book, watching a funny show or even cooking a favourite recipe. We are all on this journey together and here to support one another.
I empathise with your situation. I personally have been fighting this disease for 25 years on 11/3/20. I know that feeling of being totally out of control and the frustration of no being able to get a straight answer from anyone. As far as the treatments they are invasive and not at all pleasant. The side affects hair loss, cramping, bowl problems ect. will all subside once the treatment is completed. Your whole body is being poisoned to kill the cancer cells. Sometimes Oncologists can be very aloof. Try this when you next have an appointment ring and check if the oncologist will be there. Then arrive at your appointment with the list of questions that you want to ask. I find it hard to remember what I was going to ask and after the oncologist has left I remember and get really annoyed because I forgot to ask the questions.
Throughout the years I have learnt a few tricks that I use to help keep my going through the difficult times. I play a game with myself called the glad game. I adopted this from the Pollyanna movie. When I'm really down and finding it hard to deal with the day I find something to be glad about it may be something like I'm glad that I have 2 legs that work. or I'm glad I have a brain that works and allows me to make a cup of tea. I use this when I'm in the darkness and don't seem to be able to feel the light. It brings me back and reminds me of the hope that I have and helps me put a smile back in place of my frown and adds a little light.
I have kept working throughout the treatments over the years as I felt that for me it gave me normality. I don't let go of control of anything that I can do for myself. I'm passionate about this.
Contact Look Good Feel Better 02 8569 1829. They conduct workshops for ladies with cancer. I have attended a couple of workshops and find them very informative. You will learn lots of tricks to help you when you apply make up, scarf ideas and you will get a great pack of makeup put together just for you. The products are all top quality from all the top makeup companies all donated for us. This was a very uplifting experience for me.
If you are able to get out of the house and go for a walk or to you happy place it will help push away the depression and isolation that we sometimes feel. Maybe give yourself a little treat after treatment or a few days later if you can manage it. I have found it's important to be kind and to love yourself with all these changes happening that you feel you have absolutely no control over.
I have used both the drugs you are on over the years they are very good at fighting Ovarian Cancer.
Also give the NSW Cancer Council a call they may be able to offer some help and will help you with loan wigs and scarfs all free 13 11 20. Ovarian Cancer Australia may be able to guide you to a support group closer to you to join.
I also have a lot of coloring books time just disappears when I have my head stuck in a book miles away and before I know it time to go. I have also learnt to play Ukulele and with the practice and learning songs it all keeps me very busy. I find keeping my mind active is very beneficial for keeping the darkness at bay.
I sometimes say to myself or out loud "Cancer just picked a fight with the wrong girl" i'm gonna kick it's ........you can fill in the words what ever make you comfortable.
Hoping I have helped you a little Suet,
Hi Jules CWA, mine is all through my peritoneum. They don't know whether it is in my ovaries or not as I am inoperable but apparently the fluid/cells they drained and looked at appear as OC (which I don't fully understand as apparently Peritoneal Cancer looks exactly the same as OC). Anyway, let us know if you get any more information.
OCA are unable to recommend specific gynae-oncologists but I have attached a link to gynae-oncologists who practice in each state of Australia:
You may find it helpful to print it off and take to your doctor. Other women on this forum may be able to share what they have found helpful in choosing a doctor as well.
Please don’t hesitate to call our support line on 1300 660 334 if you require any further assistance.
Hi Suet, you have certainly been through the mill, Im glad the operation and your gynecologist oncologist was fantastic I feel I owe my life to mine. You are not alone on how you feel it is perfectly normal. The chemos are horrendous but they do there job. I suggest you talk to your local GP and a referral to a psychologist who deals with gynecology cancers they are subsidised by Medicare. You can also access support through the Cancer Council Cancer Connect program where you will be able to talk to another woman who has been through OC. The Cancer Council also runs other programs to help you feel better within yourself. However with all the help available you can feel isolated. But I found the weeks did pass quickly I took a friend with me when I was having my treatment and remember that the Chemo nurses also have a wealth of knowledge talk to them as well. I wish you well, hope this info helps you.?
Hi I am new here, I was diagnosed with peritoneal cancer in December 2014, it was advanced stage 4, they gave me a 20 chance of making it to 5 years, I'm now at 4 years, had 5 occurrences currently back in chemo now. had debulking surgery in early 2015, and just been back in hospital this past December for ascites and not being able to get fluids and food down, its getting easier to eat now the ascites are going down from chemo, my last scan showed a thickening of the peritoneal layer which I can feel quite easily.
When I was first put into chemo it was in my lymph nodes , my lungs and around my bowel partly blocking it, its since come back in so many places its been in my stomach, around my liver and pretty much everywhere at different stages. But I'm still here and going for another CT scan in a few weeks to see if chemo is working this time, I'm truly sick of it all but what can you do, you just keep taking one day at a time.