Any thoughts appreciated

edited November 18 in Welcome & Orientation

Hi, This is my first time posting. I have stage 1C ovarian cancer. I have just had a full hystorectomy. Results came back clear on everything they cut out. Diagnosis was derived from the clear cell cancer in left ovary that burst during first surgery a few months prior to remove what was suspected to be a benign cyst. They now are talking chemo but I am yet to see an oncologist and have no idea what to expect, what drugs are for this type of cancer, whether I have a choice of drugs etc. Is anyone familiar with the genetic testing to determine the best 'match' of chemo drug/s?. Has anyone on this forum used complementary medicine whilst going through chemo to reduce side effects as well as to increase efficacy of chemo? Any experiences, information and thoughts are welcomed. Thanks.

Comments

  • Hi Elly,


    Welcome to the forum!  I'm sure that you are felling overwhelmed at the moment and I hope that my story may answer a couple of your questions.


    My diagnosis, back in 2014, was not dissimilar to yours... stage 1c, clear cell carcinoma, found during surgery to remove mass and have hysterectomy, where everything was removed.  My maligancy was contained within a mass on  my left ovary too and had not spread anywhere else.  (Thank God!)


    After recovery from the surgery, I had 18 weeks of adjunct chemotherapy, to clean up any nasty cells that may have escaped, and was given a combination of carboplatin and paclitaxel.  I was given reiki by family members during chemo... I guess that it helped because I can tell you that I did not experience too many side effects.  One of the "antirejection" meds gave me insomnia, so on chemo day, I would be awake for around 24 hours!  I did have a little bit of nausea and found that good old fashioned fruit tingle lollies helped heaps.  I lost probably 3/4's of my hair during treatment.. another lady I know used cold caps during her treatment and did not lose her hair.


    Please keep in mind that everyone is different and everyone responds and reacts in different ways.  Once you have seen an oncologist, you will have a clear picture of how they will proceed. If there is anything you are not sure of or have concerns about. ask questions of  your oncologist, your surgeon and your oncology nurses.  They are all there to help.


    Please feel free to reach out to me if you have any other questions.  If I can't answer, I may be able to point you to someone who can.


    Take care,


    Karen xx

  • Hi Karen,


    Thanks for taking the time to reply, I do appreciate it. I am worried about everything with chemo especially with eating ( or not being able to). I am down to 44kgs (I lost 1 kg in hospital after surgery because I just couldn't eat with all the medications in my system and the other few kilos I think I lost because of anxiety - or maybe the cancer too) and the thought of going into chemo before I have time to put on a few kilos really scares me and I feel like no one is listening to me when I say I am  not physically or mentally fit enough for chemo. How soon after surgery did you start your chemo? Good to know you came through o.k without too many side effects, that's good to hear.


    Out of interest, what routine tests do you do now to keep a check that nothing has come back? I know the C125 marker is one, do you have any other tests/scans?


    Also while I think of it, what was your experience of surgical menopause? ( that is assuming that you hadn't gone through menopause prior to surgery). Or to anyone reading, I am curious to hear how soon after surgery menopause symptoms appeared?

  • Hi Elly,


    It is absolutely understandable that you are worried about chemo.  It's not an easy thing to get your head around.  :(


    I started chemo about 4 weeks post surgery and was scared witless prior to commencing.  My surgeon wanted me to start earlier, but it wasn't feasible from a logistics perspective.  Your medical professionals cannot force you to undergo treatment.  Your body, your choice. If they clearly explain the pros and cons and you completely understand where their coming from, the decision is entirely yours.  You can also get a second or even third opinion.  If they are all telling you the same thing, they you can make an informed decision that is right for you.


    I didn't lose weight whilst having chemo, in fact I gained weight. I really didn't suffer from loss of appetite.  The same meds (steroids) that I was given that caused insomnia, also caused weight gain.  I was very puffy!!


    Because I have a genetic predisposition to developing certain malignancies, I have to have a barrage of tests annually.  My CA125 along with a couple of others is what is used to monitor potential ovca reoccurrence.  Yes, I went into surgical menopause.  As I was only 47 at the time of surgery, I started HRT (patches) very soon after surgery.  I was told it was my decision as to whether or not I wanted to stay on HRT.  After around 2 years, I decided to stop.  For me that was a huge mistake. The night sweats and mood swings were unbearable.  It was better for me and my family to continue to use it.


    Hope that helps a little.


    Take care of you!


    Karen

  • Thanks Karen,


    Yes I feel that I really need to do more research and get more opinions before I commit. Where do I stand though as a public patient? I am concerned that if I say to the oncology team that I want more time or that I want to seek out other options or other professional opinions that they might refuse me. I already feel that I have been pushed around leading up to and immediately after surgery. I get the very strong feeling that if I don't comply and if I question anything that I will be rejected.


    Out of interest what put you in the stage 1C category?


    Thanks ( I think ) for sharing about your surgical menopause experience, it doesn't sound like much fun. I guess it will be what it will be and every woman is different. I am tempted to say that I won't lose sleep over it, but I realise this could backfire and insomnia could present itself to me any day ( or night).


    Regards


    Elly

  • Hi Elly,


    Unfortunately, I can't give you any personal advice re the public system as I was treated privately.  However, from what I understand (at least where I live in country Vic), is that your case is discussed by a team of oncologists who will determine the best course of action for you.  It is also my understanding (depending on the size of the facility/hospital) that you are likely to see a different oncologist at each visit.


    I was classed as 1C because the tumor was inside and outside of my ovary... my surgeon (gynecological oncologist) told me not to worry about the staging as it is usually only used to determine whether or not you are a suitable candidate for clinical trials.  That was almost 5 years ago though, so I'm not sure if that is still the case.


    I don't know that you can be refused treatment for asking questions and/or to delay treatment.  I suspect that the urgency in your situation is probably due to the cyst bursting during your initial surgery and they will want to clean up any nasty cells that may have escaped and stop them in their tracks.  I'm by no means an expert on this and am only basing my assumption on what you said in your first post.

    Do you have a GP that you can talk to about all of your concerns? Or if you know where you are likely to be treated, can you get in contact with the team there?  They may have someone who you can discuss all your concerns with.  Oncology nurses are truly wonderful people and in my experience, always willing to go above and beyond to help ease your concerns.


    Hope this helps.  Take care of you.


    Karen

Sign In or Register to comment.