Had my avastin today. Nearly didn't have it as I had protein in my urine (again) but they went ahead with it.
Saw the doctor and he was saying if I get 6 months in complete remission , I'm currently 2 then it's better for me as will mean I'm platinum sensitive. If not I'm platinum resistant. Also he told me that I will recur. He said something about four years. I don't know if this was how long I might have left or when I might recur but I feel low and depressed now.
I didn't want to ask him what he meant. Also the manager of the research centre said my hair will grow back thinner.
Xxx
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Suzanne333
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I am glad you got your treatment today. Sounds like they really don't know what to expect at this point... Time is going to be the story teller more than any doctor. How can they say any of that with out knowing how you will respond to the drugs.. I am so sorry they were not clearer on this information for you.. As for the thinner hair you said it grew back thicker the last time so maybe it will be back to normal... Please do not let them dictate your outcome so early in this process... And yes if I am told the same thing down the road, please feel free to give me this little pep talk back at me. I hope your day is blessed with the presence of something beautiful.
Aww. Thank you for your lovely message. I've got to try and just get on with life. The nurse was lovely to me, saying they have lots of options etc. I guess I'm thinking this is all behind me as Ive had the op and done the chemos. Guess it's not. Xxx
I'm in a very similar situation to you , but I'm not on any maintenance meds.. my oncologist said I'm likely to reoccur but didn't give a time on it .. it is very depressing when I think about it , but just look at the ladies on here!!
No one knows how much time we have.. I also think it's the way our consultants deliver some of this information, one appointment I attended made me feel sooooo sure I was on my way out !!
The signing off appointment was much better in the sense that my oncologist said " just go out , enjoy life and just get on with it " if it reoccurs we will deal with it !
So please try and look on the up side , hard as it bloody is!
Thank you Jackie. I'm usually quite positive. You are right though, they aren't great at the way they deliver information. Always going with the worst case scenario I think.
I hope you are ok.
Thank goodness for all you lovely ladies on this site. We are in a club we don't want to be in but we are all here for each other xxxxx
Thank you Jackie. You are right. I must remain positive. I'd been doing so well but yesterday's visit just sent me back to feeling low. I'm going to get on with life. I hope you are ok. Xxxxx
I'm feeling quite well at the mo, but still feel a few aches and pains , my tummy is still chubby especially on one side , the other side is occupied by a stoma!! Hoping to have this reversed in the near future...
I'm glad you feel ok. I hope your aches and pains go. I have lots of pains when I'm in bed. I'm ok in the day. We do soldier on. We have to. It's hard though sometimes. I think I bury my head in the sand a lot. My friends and family don't like me talking about it. They just say it won't come back. They don't understand. Xxx
Wow! Weren't they insensitive little bundles of joy?!? No-one can predict if you will have a recurrence, when that recurrence might happen, or if you will swan off into the sunset and live to a ripe-old age. You're a person, not a statistic.
As for the hair, mine is just as thick as it ever was, and I'm sure most people here would say the same thing. Don't worry about it.
Jeeez...they certainly know how to be encouraging down your way Suzanne! I don't know what has prompted them to tell you the cancer will definitely come back..ok about 80% do recur but that leaves 20% who don't so what's with the 'definitely'?
My lot said 'we don't know and neither do you' let's act as if it's gone and cope if it comes back'
Which seemed fair enough. Oh yes my hair is thinner but hoping now I finished Avastin it might thicken a bit..who knows?? xx
Yes none of us know if we will be on the 80%. Even if we are, we can be treated again.
Must keep positive.
Hope all is good with you. Xxxx
Wow, what a doom merchant he sounds!!
I just wanted to share some positivity that occurred for me over the weekend.
I'm also stage 3c high grade. I was feeling low and struggling with post 5th first line chemo and heavy cold. I spoke to a new Reiki therapist on the phone to arrange an appointment. Whilst talking she said "oh my sister had Ovarian cancer treatment over 3 years ago, stage 3 high grade, she had chemo/surgery/chemo and has had no recurrence and is so happy and healthy". She apparently doesn't use social media so she's not on here.
2 hrs later I was talking to my friend who said "oh I have something to tell you, Ive started seeing a counsellor and she apparently had OC stage 4 and had the same treatment that you are having and she's had no recurrence 4.5 years down the line".
Just to complete my joy, I was relaying this to my Aunty who then said that whilst discussing me she had spoken to a lady at her church on Sunday who is 12 years on from stage 3c high grade and has had just 1 small recurrence a few years ago, but has been well again for years
All of these chance conversations made me feel a little more optimistic and hauled me out of my melancholy state of mind. It made me reflect that there are lots of ladies on here doing well, but we must also remember that there are many more who simply don't join forums or social media. I hope this helps you too Suzanne? Xxx
Thank you for your message and the positive stories. It did make me feel better and realise there is a hope. I'm always telling people there is hope etc but when it comes to myself, I panic about it.
I was diagnosed stage 4 High grade serous in June 2016 . Full hysterectomy in Nov , finished chemo in January and had my 5th Avastin today . My 3 month post surgery scan all clear and CA125 down to 10 from 3880 .
I can totally understand how you feel after being told such pessimistic news . Had a similar experience with the first oncologist I saw Told me it could be back in 6 months and that was before I had started my treatment. but luckily never saw her again.
No one knows how each of us will react to the treatments or when or if our cancer will return . I like to remember what my surgeon said to me as I was asking about my recovery from surgery ' don't worry you will have many years ahead to make a full recovery ' After all he has seen more of my body inside and out !!!
Have started counselling which is helping and about to start a fear of reccurance group .
Had been worrying a lot about reccurance and almost frightened to feel well but then realised I have to enjoy each day as no one knows about tomorrow . My good friend and neighbour recently died in a tragic drowning accident at the age of 51. I despite being diagnosed with stage 4 inoperable OC in June am still here and determined to enjoy life . We may not be curable but it is possible to live with cancer as many of the lovely ladies on here are proving . Stay strong and prove them wrong !!
Hi Suzanne, Good you still managed the Avastin, I said this before and you will find that other ladies have said the same on one can tell you how long you have to live, when I was diagnose 3 years now my family was told I would not see the year out, it's not been easy but I'm still here fighting ,cheer up and fight on. As for your hair I lost mine twice and it's grown just as thick one problem is I had red hair all my life and now it's thick and grey, My daughter said it was grey all the time I just colored it (not true).
through all of your posts you have always come across as a very positive and bubbly girl, please do not let these doctors bring you down, none of us know when or if recurrence will happen, stay strong 🙂
DEAREST Suzanne, All I can say how dare he, it might reoccur and it sure as h..l might not. Look at all the wonderful women on this sight who are long term survivors and never had a reoccurence or if they have it has been a long time down the line. Remember you are not a statistic you are you.May the force remain with you . Chris
Yes I'm going to keep positive and the stupid doctor can do one.
I love this site and the wonderful amazing brave women on here.
We are going through it, the silly doctor isn't. Xxxxx
Hi Suzanne, unfortunately our consultants at times do not realise we have feelings and that we are human, No one can give a time frame about recurrence. It can differ. I finished Avastin October 2015 and havent had treatment since so I am counting my lucky stars, There is no reason why you cant be the same, I would say drink plenty of water to try and clear the protein, Here in Ireland they stop if protein shows up in the urine, so stay hydrated as much as possible, I say you are unique the same as the rest of us and will do fine
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