Unbelievable : I feel that I must share my... - My Ovacome

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Unbelievable

Welshandproud
Welshandproud

I feel that I must share my irritation with the duty doctor at my gp surgery this week. I was in a lot of pain with severe indigestion, a swollen abdomen and really bad bloating. I was convinced that the cancer had returned. The Gp on duty initially seemed sympathetic and said that it must be hard mentally to cope with a cancer diagnosis . I said especially when you've been told that it will return. She said that it might not happen for 10 years or more. I tried to explain that this was unlikely with stage 3c high grade serous but she didn't seem convinced. She then asked me to get on the couch and surveyed my swollen belly complete with huge hernia. She then told me that my weight wouldn't be helping me and that she was going to do a diabetes test. I am a size 14 but a bit more around the hernia. This really made me feel good as you can imagine.

I went in with a fear of recurrence and now was told I might have diabetes as well. I had blood tests and was phoned by the same gp this morning. No I don't have diabetes thank goodness but my ca125 has gone up

She told me that I'd be best off to look at Google and see all the reasons why this could be the case. I still can't believe it. If my appointment was meant to reassure me then this fell very short of the mark. I think I'll try to see my usual gp next time. Luckily he is very good.

My ca125 was 23 in August then went up to 36 in November . It is now 47

I lnow this isn't a huge number but it does seem to be an upward trend. I have spoken to my gynae cancer nurse who is trying to get me a ct scan as I haven't had one since last January. I really do fear that the cancer is on its way back.

35 Replies
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omg im so annoyed on your behalf. Thats so bang out of order! words fail me! Hopefully its not a recurrence but hopefully your nurse can get a scan sorted ASAP. Sending you a big hug xx Kathy xx

Thank you

I'm glad it's not me just being oversensitive but I'm a bit wobbly at the moment xxxx

Gggr, so angry for you. I was admitted to A&E in the summer when I fell down some steps and injured my ankle. The very rude Nurse, who signed me in when I arrived, looked at my ankle and muttered "that looks like a sprain", offered me no pain relief and dumped me in a room for an hour while I waited to be seen. Some chuffing sprain, it was dislocated and fractured in three places !! I wish these medics would think a bit more sometimes, thankfully the thoughtless ones are in the minority. I'll keep everything crossed for you xx

Thank you so much for your good wishes.

I'm sorry you had to go through all that at the hospital too. Thank goodness these medics are in the minority xxx

Oh my!!! The sheer arrogance of the woman, especially as she is obviously in need of clinical training regarding OC! I'm furious for you and worried for other folk less well informed than you.

Good luck with the results etc.

💐💐

Thank you little San. I think the woman is completely unhinged and needs to reread her medical books xx

That’s just abysmal. I’m so sorry you had to go through it. Some people just shouldn’t be doctors. I’ve met a few recently too. The one who gave me my diagnosis wanted me to feel sorry for her having to give the news! I kept a straight face, just.

Your CA125 may have risen because of inflammation. Which may be caused by lots of different things. Definitely don’t see her again and I hope you can contact your oncologist or CNS nurse directly for a scan and are given one very soon. Worry can cause cortisol levels to rise which can cause inflammation so keeping your stress levels down is important.

Sending hugs

Alex

Thank you Alex

I've spoken to my cns nurse and she is organising a scan for me. Hopefully it is some inflammation and not cancer related. I'll keep my fingers crossed x

Dear Sian

I am so sorry you experienced this awful incompetence. I increasingly find that if I see a gp I am always better informed than they are, which I suppose is not that surprising as we have all become reluctant experts on the subject of OC.

I am also sorry you are feeling unwell and going through this worrying time at Christmas. I really hope you can get a scan soon and get some answers. I hope your CA125 levels out, some ladies have quite a high level anyway. As I said when I met you at Maggies, which was a great pleasure, my CA125 rose slowly over 2 years which was counted as remission time, and nothing showed up on a scan until right at the end of that time. All the aches and pains I had I think were down to surgical adhesions and scar tissue, which is probably the same for you, plus you have the hernia. Wishing you all the very best and I hope you feel better soon.

Sophia x

Welshandproud
Welshandproud
in reply to SCWI

Thanks Sophia for your encouraging words. I will know more after the scan but hopefully the rise is not significant and more related to bowel issues. It was lovely to meet you too at Maggie's and I wish you and your family a very happy Christmas xx

Flipping heck!! Are we not told to not Google? Very bizarre from a GP..

I hope you get the scan quickly xx

AlaNtO
AlaNtO
in reply to Emalou71

Google knows more than the GP?

Yes unbelievable. I was so taken aback by her suggestion.She is the first gp who has suggested me use Google as a diagnostic tool

Oh Sian. I think that warrants a word in your GP’s ear. Unbelievable. Sorry you are having this worry, especially this week. Your bowels could be inflamed? Do you see the Gastro team again? Hope you get the reassurance you need soon. I thought our team didn’t do CA125s?!

Let us know (or pm me).

Linda xoxo

Hi Linda I'm am seeing the gi team on 27th and a scan is being organised by our cns so hopefully I'llike have some more information soon. Thank you for your kind wishes xxxx

I am so cross that you were told to google, what an attitude from your doctor. Look we do end up all shapes from surgery and chemo and that doesn't worry me. My gp thought my blood sugars were high but they weren't in the end. Yes see the gp you are used to, get another ca done and your liason nurse is looking after the scan. So you can do no more now and try and relax and enjoy Xmas. Its not a huge rise and try not to worry

Thank you suzuki. I am trying to put it to the back of my mind until the festivities are over and then see what the scan shows up in the new year

Well the award for the sensitive and helpful gp for 2018 goes to.....

Is she having a laugh?

Take no notice of the silly bat (polite) your body, your life, speak to someone who knows what they are doing, I am so angry for you too, she’s in the wrong profession.

Don’t worry, you will be fine when you get the right advice,

Carolexx

Thank you Carol. I think the silly bat is seriously unhinged. The worst part was that she kept telling me how she was worried about my mental health and then gave me more to worry about.

I would be more worried about her mental health and the safety of her patients to be honest

Where do they find those??

You're right... just ignore that GP and go back to your trusted doc. Hugs. Maus

Definitely

I'don't have to be on my last legs before I see her again.

It’s truly amazing how insensitive some medics can be! I’m really sorry you’ve had to go through this and hope you can be reassured soon by your Onc. Love Jo 🌺🌼🌸🌻🌹🌲

Thank you so much. Hopefully my scan will come soon.

Wow I’m at a loss for words ... very ignorant on her behalf, and to tell you to google???

Please go see someone else that knows what they’re doing, I pray it’s nothing but you have to see someone to be sure.

Oh Sian--I empathize! When I knew I was relapsing because of my ca125 (mine jumped much more than yours--from 15 to 73) my oncologist's nurse refused to "allow me" to come off the trial I was on (I was on the placebo I later found out altho I knew). I respectfully told her I was allowed per the trial agreement and she kept saying no and she would not approve a CT scan until it was due on the trial. The next day--for my every-6-months follow up, I saw my onc surgeon who rolled his eyes when I told him and asked me if I wanted it that day. (I found out Surgeon trumps Oncologist where I am). So frustrating and what you were told is just plain wrong and someone really needs to speak to your gp! Google? WRONG. My goodness--we must be vigilant and many are not able to be on their own. Scary stuff.

Hope you get your scan soon and I am sorry you think its a relapse---the worry alone is tough to bear. I hope answers do come more quickly for you now. Hugs, Judy

Thank you so much Judy. Your story is so frustrating too. Do these medics not realise the additional stress and worry they are putting us through. Thank goodness most of them are much better informed and more competent.

This is shocking and I think you should make a complaint.

Welshandproud
Welshandproud
in reply to Neona

Yes I'm going to talk to my usual gp when I next see him

I'm so sorry you are going through this. We already have the worst fears in us just walking into the medical place, but, don't expect for them to make it any worse. I think that telling you to look up on internet is a crime. First thing we are all told is NOT to go online because it can really make us crazy. I don't know if this will help at all, but, last January my CA125 had gone from 11 to 22. They seemed to be the doubling in numbers that warrants a Catscan. Although the number is still under the 35 mark. Had Catscan and it revealed a 5 mm nodule adjacent to my liver. Well....off to 6 more rounds of chemo. When the dust settled and I was done moaning and groaning about it...I reached the conclusion that it was best to blast that nodule out of my system before it grew. I think if it were this were now, they would put me on the Parp inhibitor. I guess it's best to blast it out and stay on Maintenance. I am now on Zejula.

I'm sure, if it's anything at all that you will have gotten it early enough.

Best wishes and hoping it's nothing! Stay well.

XOX

Marisa

Thank you MariSarah. I'm hoping I will get a scan appointment soon and then have a better idea to what's going on. I'm pleased you were able to get your nodule zapped and hope things are good for you at the moment xx

Thank you! At the moment I am entering my 3rd month of Zejula. At first, I didn't want to hear of it...then, when my sanity returned, I accepted it and I'm glad I did....feel like I'm doing something to keep away the evil cells.

Happy New Year!

XOX

Marisa

You too. It sounds like the zejula is keeping the beast from the door xx

PS...I too had a run in with a PA who was more concerned with thyroid, skin, etc.

I asked her nicely to please stop alarming me with even more issues and can we please focus on the cancer. I told my dr and nurse. She is no longer there. Got transfered to an area where she would have very little communication with patients. Thank you. lol.

What a good idea. Sounds like she needed a change of career!!!!

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