Stage 3 high grade?

Hi LRobbo,

I was diagnosed with stage 3c high grade serous ovarian cancer in January this year. I was due to have 3 chemos, debulking surgery, 3 chemos but my surgery was delayed due to covid situation. I had 4 chemos and was then able to have surgery 3 weeks ago. I am due to have my 5th chemo next Friday, all being well. 

Everything seems positive so far; I coped with the chemo well, just achey legs and feet during the first week. News from the surgery was good - the chemo has worked even better than the scan showed, and all of the visible cancer had gone except from the actual ovaries. I am feeling really well and healing steadily.

I try to take one step at a time and each step has been positive for me so far (apart from when told that my surgery would be postponed until after all 6 chemos, when I definitely lost it for a day or so!). I do know that I have been very lucky so far but I am determined to enjoy each day as much as possible and look forward to being able to meet up with my children and cuddle my grandchildren again soon. Also, the ladies on this community are wonderful - it is so good to be able to chat to people going through the same or similar things to you, and everyone is so supportive.

I wish you all the best with your treatment, do let us know how you are getting on.

Best wwishes, Nell xxx

Hi Nell,

Thank you so much for replying and being so positive. Sounds like our side effects are similar so far, the worst thing being the really painful legs and feet. Still got my hair but I know it will go very soon. I was just having a down day today.

Glad you got to have your surgery, so many have been delayed. Did they remove your ovaries in the surgery?

I too I am desperate to see grandchildren and give them a massive cuddle but seems will be a while before we can do that.

I really appreciate you replying and also would love to know how you get on and every best wish for your next scan.xxx

Hi LRobbo, 

No problem! The aches and pains are a bit grim when they stop you sleeping aren’t they?  My hair started to fall out about 2 weeks after the first chemo and 2 weeks later it was so ridiculous that I got my husband to work with the clippers. I bought a nice wig just before lockdown but haven’t had any opportunity to wear it! Surgery was a total abdominal hysterectomy - they took ovaries, Fallopian tubes, uterus and the omentum (apparently a layer of fatty tissue that hangs down in front of the bowel). These are all places where cells could lurk and reoccur so they got rid of them all.

I guess we all have a down day now and then - it’s hard not to when you can’t get out and about to distract yourself.

Best wishes, Nell xxx

Hi LRobbo,

I too am following a similar diagnosis/stage/treatment to you.  I have just had my 5th chemo last week, with the last one due on 2nd July, I should have had my operation after 3rd, but covid stopped that and I am completing all my chemos first.  I had a CT scan after 2 chemos and was pleased to hear that the tumours had shrunk and other areas that it had transferred to had stabilised, so that was good news.  My CA125 has gone from 98 in January to 11 last week, which is well in the normal limit of 35.   I had to change my Taxol to Docetaxel because I had a reaction to it, so have been having Carbol and Docetaxel since my 3rd.  My hair fell out after 1 week so I got my husband to shave it off.  I have a lovely wig and don't have to worry about my roots with lack of hairdressers at the moment.  As Nell said, I too was aching and tired for about a week after chemo, but It is manageable,  just have lost of warm baths to ease the muscles!

We have a lovely group here, who you can always chat to, or compare notes with.  There seems to be a lot of new ladies joining the group as well.   Please message us if you need support.  We are all in a similar position, and it does help to chat to someone who is going through the same as you. 

I was speaking to a  cancer nurse who worked at The Marsden for 30years before coming to my hospital, and she said there is so much they can do nowadays, there is always something else they can try from their armory,  so I feel that a positive attitude really helps me cope with it.  

Take care and stay safe, let us know how you get on.

Love and virtual hugs,

Hi All

I too was diagnosed with stage 3 high grade serous. That was January 2019. For me it was actually picked up on routine smear test.  I still remember the day the letter came like it was yesterday.  It arrived 21 Dec 2018....yes days before Christmas.  It stated the smear test showed extremely abnormal cells but not from cervix and to make a doc appt within 5 days. Well you can imagine i did not eat much of my christmas dinner that year!  An appt to see consultant came thru for 28 Dec. Basically  said it would be a cancer but until scans and bloods would not know where.  Anyway...fast forward 18 month. 3 cycles of chemo and avastin. Full surgery cut from boobs to pubes (but i didn't have any lol) then 3 more cycles of chemo and avastin then avastin on its own for 9 month. I have been declared in remission and back at work full time. So see....lots of hope. Cant say it was all easy but worth it hey? Well when i say back at work i had only been back 3 month then had to shield.  Working from home now tho. Just to add my ca125 was in thousands apparantly....last b test showed  12!!. I so grateful for all the treatment i received and could not fault anything. 

Hi again.  I did not mean at all to sound blase about the whole process or self 'chufties'. I have had some horrid horrid times and am still recovering to be the person i was but really just wanted to say you can come thru this x

Hi Marie
I didn’t think that at all , i felt very positive after reading your story, it shows that even though we are going through this horrible process, you can come out the other side.  I loved your expression of “boobs to pubes”’it made me laugh! You definitely need a bit of humour otherwise it will take over! 
Love 

Hi Janet,

Thank you for replying and glad to see you are managing reasonably well and that your chemo treatment have shrunk the tumours which is fantastic.

This site is great and so helpful to me as I'm in lockdown on my own (now shielding of course).

Good to know there is someone out there that gets it. I look forward to hearing how you get on - please keep me posted.xx

Hi Marie, 

Thank you so much for replying and great news you are in remission! Not blasé at all Marie, we know this is going to be hard and if you can add a bit of positivity for others then go for it.

I for one am feeling better mentally than I was yesterday and that's thanks to you and others who responded to my post.

Thank you and keep in touch

xxx

Hi Marie, 

I was very interested to read your post as your journey seems very similar to my own.   I was diagnosed in late November 2018 and had my last Avastin just three weeks ago.  I had surgery April 2019, complete debunk, then more chemo and then on to Avastin.   When I phoned my CNS nurse today to see if I should have more Avastin this week she told me the treatment was over after 18 cycles.  I will have a telephone consultation on Friday with the specialist and then perhaps will know what next.   My ca125 was down to 7 at the last count so Im hoping they will allow me off the Avastin for a while.  Im confused and not sure wether Im happy about that or not, my question is will there be more chance of the cancer returning if I am not on Avastin.  I know the side effect of Avastin are not good, and long term can be dangerous but I felt I had some sort of shield when I was on it.  I will have plenty of questions when I speak to the consultant on Friday.

I hope you don't mind me asking but my question for you is, did you have a scan after your last Avastin?  How did they know you were in remission and when did they tell you?   How often will you have to go to the clinic?

It really is fantastic news for you and I hope all goes well.  Thank you for sharing you uplifting story,  Penny

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