Hi I am Elizabeth Wright and have recently been diagnosed with ovarian cancer

edited November 2019 in Welcome & Orientation

Hi my name is Elizabeth but everyone calls me Liz, I have recently been Diagnosed with stage 4 high grade serous ovarian cancer. I would like to find a support group around my area where I can go and talk to people about what is happening to me, so far I have had a fairly unpleasant introduction with the way my medical team are treating me which has only served to make me angry and confused.

Comments

  • Hi Liz,


    Welcome to the forum.  Am very sorry to hear about your diagnosis and can understand your frustration around the way your medical team are treating you.  It can make a very stressful time, infinitely worse!  I speak from experience.


    You will find lots of useful information here on the forum and on the Ovarian Cancer Australia website.  There are support groups run in some capital cities and also tele support groups for those located in remote areas.  Can I get a rough idea of where you are situated? We may then be able to point you in the right direction.


    Also, feel free to ask your questions on this forum.


    Look forward to hearing from you.


    Karen

  • Thank you for your post Liz, I know you will find lots of support and good information here from Karen and the other members of our online forum. I have also emailed you with some information on face to face support groups in your local area.


    Kind Regards,


    Hayley, Support Coordinator, OCA

  • Thank you Hayley, I will definitely  go along to the next meeting in Charlestown.


    regards Liz

  • I was wondering how long after Surgery [ hysterectomy and the debulking] do they normally start chemotherapy again?

  • I am not sure that I am in the right place to ask questions and receive answers, can some one help please.

  • Hi Liz,


    You're in the right place to ask questions of other women who have had an ovarian cancer diagnosis about their experience. They will usually get back to your questions though not always immediately. If you'd like to speak to a health professional right away you can call the Ovarian Cancer Australia Support and Referral Line on 1300 660 334 or email us at support@ovariancancer.net.au, 9 am to 5 pm, Monday to Friday. Alternatively you can try and contact your medical team who might be the best people to answer questions about your specific case.


    Thanks Liz and please don't hesitate to contact us.


    Hayley, Support Coordinator

  • Thanks again Hayley, I am not very computer savy so was just checking, I am happy to wait.


    regards Liz

  • Hi Liz,

    Hope you are doing okay.

    In response to your question “I was wondering how long after Surgery [ hysterectomy and the debulking] do they normally start chemotherapy again?” as with any treatment it really does depend on your individual circumstances, how well you recover from the surgery and of course the results of the blood tests you will probably have prior to each chemo session.

    In my case, I started chemo four weeks after my surgery. (Surgery was the first step in the process for me.) My gynecological oncologist wanted me to start straight away and to be honest, I was a little shocked by this, given that I had just had some fairly major surgery!

    Hope that helps. I’m sure others will have had different experiences and will respond as soon as they can.

    Kind Regards,

    Karen

  • Thanks Karen, they are looking at starting my surgery after my next and 3rd Chemo session. My gynecological oncologist is very good at what he does and although a bit frightened I feel safe with him.


    Cheers Liz

  • Hi Liz,


    Welcome to the forum.  I can understand how overwhelmed you must be feeling.  Hopefully we can make you feel a lot more comfortable about your treatment.  In my case, when I was first diagnosed I didn't have surgery until after I had had two rounds of the chemo, carboplatin and Taxol.  I had about 3 weeks off after my surgery and they did a blood test to make sure my red and white blood cells were at the level required for chemo.   My experience seems to be similar to what they have planned for you.  Take care.  Helen

  • Thanks Helen yes your right,  I am being given carboplatin and paclitaxel and they are planning for after the third session of Chemo which is on the 15th of  August. How did you cope with the surgery and did it take you long to get over it? I hope I am not being too personal asking you this, if so disregard the question.


    best regards Liz

  • Hi Liz,


    After your surgery, as soon as you can get out of bed and walk.  Make sure as soon as you stand up you roll your shoulders back and stand up straight to avoid back pain because you will naturally hunch forward to protect the wound.  Whenever I've had surgery I had found that for the first 4 weeks I can eat what ever I like because the body needs the fuel to heal and in the final 2 weeks I start to feel back to normal.  Ask your doctor (it's not Jaabak at JHH is it?) or the nurses what they recommend to put on your scar to soften it because they can hurt a bit when they heal and you start to move more.  Make sure you do the coughing exercises, they will hurt but if you hold the wound with a pillow it's not too bad.


    Just make sure you get out of that bed as soon as you can!


    Nikki

  • Hi Nikki, thanks for the feed back about after surgery care that is very helpful.


    cheers Liz

  • Hi Again Liz,


    It's great that you feel safe with your gynecological oncologist.  They are a special breed, in my opinion.


    I 100% agree with the advice Nikki has given.  One other thing I suggest you do post surgery, is talk to the nursing staff about massaging your abdomen, to try and prevent adhesions from forming.  They can be quite nasty and very debilitating.


    Take care,


    Karen


     


     

  • Hi Liz,


    I don't mind any personal questions, ask away and the more hints and information you get the better.  Like Nikki, I am a great advocate of walking and getting out of bed as soon as you feel up to it.  I used to walk around the ward pulling along any drains that I had in.  I was in hospital for two weeks, however one of those weeks was due to a complication after having a port put in.  I then travelled home (my surgery was in Sydney and I live in Canberra).  I then had another week at home and then started back at chemo.   From my experience I have also found that exercise, even if just walking around the block, while having chemo certainly helps with with the management of the side effects of chemo.  Pace yourself and be gentle on yourself!  I am not sure of your age group, but I was 60 when I had my surgery and felt normal after about 3 weeks.  Take care Helen

  • Thanks Karen, I will have to start writing a list of things to do  and ask about both pre and post surgery.


    Cheers Liz

  • Hi Helen, I am 66 years old and like you am an avid walker and also do line dancing twice a week, I have been keeping that up so far and hope I can continue to. Thanks for your feed back it is really helping me prepare for surgery and  hope I bounce back as well as you did.


    Cheers Liz

  • Good morning Ladies, I am assuming you have had the same surgery as I am about to have, Dr G Otton is my  surgeon and he has informed me I will have a full hysterectomy  plus a procedure called a debulking . He also said there is chance that I might have to have a colostomy bag as my bowel is fused to my pelvis, I am naturally terrified of that outcome, has anyone had that prognosis  and managed get through the surgery without having to have the colostomy bag?


    Cheers Liz

  • Hi Liz,


    Good to hear that you are an avid walker and line dancer as well and keeping it up whilst managing chemo!  As far as the surgery goes, please keep in mind that we are all different and I know other contributors to this forum have had different surgery to me.  My experience was a full hysterectomy, also removal of the omentum and unfortunately my spleen had cancer in it, so it went as well.  This is five years ago and I was on antibotics for 2 years but have managed very well without a spleen and have had no issues.  Just thinking back I remember my surgeon did raise the possibility of a colostomy bag as I did have an issue with a a part of my small bowel being attached to my uterus, the bowel was resected during the surgery and I did not need a colostomy bag.  Three years later I had a bowel obstruction and they needed to remove part of my bowel ( about 30cms) and I also did not need a colostomy bag.   I am sure you will get plenty of support if it works out you need a colostomy bag.  Please keep on asking questions.  Good luck with the surgery  Helen

  • Hi everyone Liz Here, Just wondering if any one has trouble with information being passed on from Oncologist to Chemo nurse and patient and also oncologist to patient and Chemo nurse to patient? I have had a few problems and when pushing further for answers they all seem to be covering for mistakes, for my efforts to get more info I get told perhaps I should see a physcologist.


    Cheers Liz

  • Hi Liz, I haven't had any trouble with communications between the medical staff and the oncologist.   Before I start chemo they usually ask me what my weight is, so they can adjust the amount of chemo if need be.  Maybe writing down your questions may help or having another person present at your appointments, so there can be no confusion.  Take care   Helen

  • Hi again Helen, my Husband and I already do that. The first time I started Chemo the nurse asked me what I had taken that morning before starting,  I told her and also showed her my flow sheet the Oncologist gave me, the nurse told us that it was wrong and proceeded to tell me how I should take it.


    Regards Liz

  • Hi anyone , can any one give me an answer to my question, was the nurse out of line ? my worry is who to believe, I have been taking the dexmethsone as the nurse told me ever since as my Oncologist is away on leave. I have spoken to my covering Oncologist, he said if it is working well he was happy for me to going but to let them know if any thing changed. I still feel confused with these different answers. Please let me know if I should not be asking these questions .


    Regards Liz

  • Hi Liz,  this forum is all about asking questions and learning about experiences from other users of the forum.   Ask away, though we tend to use our own experiences to answer your questions, so may not always be able to help you.  Where I have chemo it is all on the computer and the nurses just look me up and follow the oncologist instructions from there.  I have a surname which is very common, so I always make sure they have the right Helen!  I have been instructed to take dexmethsone only for 2 days and only when I have the carboplatin chemo, which is once every three weeks.  I went home with enough tablets, to last me for for all my chemo cycles, on my first round of chemo.  I do understand your concern and know it is very scary the first time you have chemo, especially when you are taking new drugs for the first time.   Checking with the oncologist is a great way to go.   Take care Helen

  • Thanks Helen, I understand but usually you come off the steroid by dropping the dosage the following two days and that is why I followed the nurses instructions. When my oncologist returns I will speak to her , I didn't want to get any one into trouble. I do want to get it right however.


    Best regards Liz

  • Hi I haven't been on this forum since August , I finished my first treatment of Chemo , carboplatin and paclitaxil in early December. Recently I have had a recurrence , I am still suffering nerve pain from the paclitaxil so the Doctors are going to treat me with carboplatin and caelyx . Can anyone tell me the side effects they suffered from this drug and how soon it started once treatment started .

  • Hi Liz,  just a quick answer to your question, I started chemo 4 weeks after surgery. I had chemo before surgery as well. There is a Facebook support group which are wonderful,


    Ovarian Cancer Australia Aussie support Group.


    Its a wonderful place to express your feelings and vent and everyone is amazing with their support. Some even get together for coffee if they live in the same area.


    I hope to see you there.


    Take Care Dionne

  • Thanks you Dee Dee , that sounds very much the same as what I went through with my first round of Chemotherapy.I would be really grateful if any one can tell me how they went on their secound round of Chemotherapy and in particular with Carboplatin and Caelyx drug combination. I had  nerve pain with the Paclitaxil so now they are using Caelyx, If any one has any information please let me know.


    Cheers Liz

  • Hi Liz,  I have been on the combination of Carboplatin and Caelyx.  It was a few years ago, however I do keep a sort of diary about my experiences with chemo and when I checked my notes, it seems that the Caelyx for me, didn't seem to have any side effects that were any different from the Carboplatin.  I experienced the usual feeling of being a bit flat, tired and nausea day 2 and 3.  By day 4 and 5 I was picking up.  I didn't experience the nerve pain in the fingers with the Caelyx.  I hope this helps and that you are able to manage the side effects.  Take care.  Helen

  • Thanks Helen, its always good to hear that some people do not suffer many side effects.


    Cheers Liz

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