I seem to have shot myself in the foot

[Rosebine2]

Mentioned during my med review that I had felt slightly breathless on a couple of occasions, but put it down to the hot and humid weather. Cue the Oncology consultant stopping my PARP until I can have a heart scan. This involves me contacting my GP (Oh that this was easy) and then them asking for an appointment at Cardiology at my local Trust. Given that the last time I needed a scan it took nearly 3 months to get one, I am pretty scared about stopping the PARP. I do have history of a slight heart function problem, but sailed through 8 hour debulking no problem . Did say that given stage 3OC I would be more than happy to drop dead of a heart attack rather than cancer. (Didnt go down well ) Just ran up and down my stairs 4 times, not breathless at all, should have kept my big gob shut shouldnt I

[Lyndy]

Oh nooo! I’ve certainly had times when I wish I’d kept my big gob shut… but I suppose they are just being cautious. Parps have a very long half-life apparently, so it will still be in your system for a while x

[SASSY196]

What I really don't understand is the compartmentalization of medicine. If your oncologist needs this, asap really why on earth s/he can't request it as a matter of urgency. I'm so sorry you have been caught up in this ridiculous situation. Maybe you can go back to oncologist, once you know timescales and see if they can expedite.

[fendweller]

When I was on caelyx I had one echocardiogram before my treatment to check my heart before starting and another half way , both organised by my oncologist, it sounds very complicated going through your GP, might be worth asking your oncologist why he / she can't refer you . If not would it be worth asking your GP surgery to do a ECG then they would contact a cardiologist if there was a problem . I hope it's a false alarm and everything is ok .Cheryl .x

[Rosebine2]

Its a case of two Different Trusts being involved, I have to be referred to my local trust who had been doing an annual test, which all went pear shaped during Covid. Oncologist wants an echocardiogram . My GP doesnt even do blood tests! Spoke to oncology bod yesterday and they are going to try and get GP to refer me urgently. I dont know why I cant be seen at Oncology Trust, perhaps its not treading on another Hospitals toes or something. I shall await progress, course its the weekend now so all on hold anyway.

[patricia54053]

When I started niraparib my heart was beating faster and bp raised ,bit out of breath,oncologist got me a appointment very quickly for scan and heart monitor fitted,my own doctors at health centre not much help,would be waiting months if it was them sorting anything out.

[Maus123]

Argh that sucks. Don't have a solution, sorry.. but wanted to add my vote to the 'I'd rather drop dead from a heart attack than die slowly from OvCa' comment.. . Can't imagine the face, heh. Keep up the spirit and sense of humour.

Hopefully you can get a ECG or othher heart check soon (private if need be, assuming affordable?) and can get back on track. xx. Maus

[candyapplegrey]

Oh I hear you Rosebine! My oncologist said if I wanted my heart function tested (my heart rate was regularly 133bpm, only since the cancer), I would have to go through GP, which I did, taking time off from treatment, then they wrote a letter saying I should not have gone through GP. I cannot win. Of course, almost impossible to get a GP appointment (this was mid-Covid) - no one would choose to go through their GP if they didn't have to. Then, when I suspected a recurrence, my CNS told me to make an appointment with my GP. But yes, sometimes you just wish you hadn't said anything. Hope all goes well and quickly now. xx

[Artgreen]

Oh blimey, just what you need. Would your CNS nurse expedite it for you? I get so fed up being treated as lots of individual illnesses instead of a whole person with the stress of having to manage their processes shooting my cortisol levels sky high. Hope you can get the help you need or hope you don’t need it!! Xx

[NewtonEmma1900]

I am just about to start 2nd line with caelyx and don’t have any experience of PARP; but I just wanted to say that when I was diagnosed with stage 3c peritoneal cancer last October and I said “ Whoopee I won’t die from Alzheimer’s”. like my dear Mum who really suffered. It’s all a double edged sword. Sending very best wishes. 💕

[Rosebine2 in reply to NewtonEmma1900]

I have a cunning plan. Private hospital could get me in next week, just need referral letter.I may go down this route if nothing happens with GP.

[Rosebine2 in reply to Rosebine2]

Well Im getting beyond stressed, cant get through to anyone to find out whats happening My GP not received a request from oncologist, and oncologists secretary on leave for a fortnight.

[OvacomeSupport Partner My Ovacome Team in reply to Rosebine2]

Good afternoon Rosebine2,

I'm sorry to hear that you are feeling stressed and struggling to get in touch with your team. Have you been able to get through to someone who can help yet?

Just to let you know if you need to talk about the situation and what the plans may be, our support services are open from 10am-5pm. You can call the Ovacome support line on 0800 008 7054, via email on [e-mail] or through our instant chat on our website ovacome.org.uk.

Best wishes,

Jo- Ovacome Support

[Rosebine2 in reply to OvacomeSupport]

Hello, Ovacome Support I have managed to get somewhere at last today! Waiting for a phone call from GP now sometime today. Thanks for reply

[OvacomeSupport Partner My Ovacome Team in reply to Rosebine2]

Hi there Rosebine2

I am really pleased to hear this and I hope a conversation with your GP is helpful.

Please do let us know if there's anything we may be able to assist with or if you would like to talk things through.

Best wishes

Annie - Ovacome support

[Rosebine2 in reply to OvacomeSupport]

Im now trying to arrange a private scan, GP says long waiting list with NHS!Obviously I dont want to be off PARP for any length of time apart from the mental stress . Its going to cost but no alternative .

[OvacomeSupport Partner My Ovacome Team in reply to Rosebine2]

Hi again Rosebine2

I’m really sorry to hear about the long waiting list for a cardiology review, and mental stress this is causing.

You could consider speaking to PALS (Patient Advice and Liasion Service) at your hospital to see if there’s anything they can do to help with this issue. To learn more about PALS and to find contact details of your local service, please visit: nhs.uk/nhs-services/hospita... .

In addition, the Patient’s Association is an independent organisation providing specialist information, advice and signposting relating to health or social care. Their free helpline can be reached on 0800 345 7115 and is open weekdays between 9:30am – 5:00pm. For more information, please visit: patients-association.org.uk/ .

I hope this information is useful. If you would like to talk through anything with a member of our support team, please don’t hesitate to contact us.

Best wishes

Annie – Ovacome support

[Rosebine2 in reply to OvacomeSupport]

Thanks Annie, I have a private scan booked for Tuesday! Fed up with trying to get through to various NHs hospital departments and leaving messages never returned. Straightforward with private. One phone call and Im in. Its worth the cost ,

[OvacomeSupport Partner My Ovacome Team in reply to Rosebine2]

Hi there Rosebine2

Thank you for your reply. I am really sorry to hear that your messages were not returned and can understand how fed up you must be feeling.

I hope your scan tomorrow goes as smoothly as possible. Please don't hesitate to give us a call if if would help to talk through anything.

Best wishes

Annie - Ovacome support

[thejoannabell]

Ugghh, that is so frustrating! I'm in the US and it's the same way. I had an inconclusive lymph node biopsy, so I had to go to a completely different (hematology) oncologist, who ordered the exact same scan, only for her to say it wasn't a blood cancer, and was sent back to my gyn/onc, who decided it must be a recurrence. This took two months.

On another note, I am on a PARP, and I am often short of breath. I tell them every single time I go for an appointment or a scan and it's never questioned or looked into further.

Good luck getting your situation sorted!

[Rosebine2]

Well Ive been for my private scan. Bit annoyed that Im not allowed to have the scan, it has to go to GP, also I assumed that it would be reported on by a cardio bod,so that it would be in laymans terms so to speak, but no just the scan as it was! So assuming another delay to get a cardiologist to interpret it now for the Oncologist. Assuming they will do that as its a private scan. Ive paid for the blooming thing surely I should have a copy . Dead impressed by the private place though.

also Ive been off my PARP for 12 days now , getting worried

[Rosebine2]

Well Im still no further forward. GP hasnt even looked at the scan. Consultant gone on leave!Ive got visions of little cancer cells like evil minions rubbing their hands together and going, goody goody, no PARP.