Waiting waiting waiting First Post: Hello, had BC... - My Ovacome

My Ovacome

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Waiting waiting waiting First Post

Whybirdie profile image

Hello, had BC 4 years ago, good result. Now OC. Saw GP 10/3/21. Associate Consultant 22/3/21, US scan 23/3/21, CT scan 30/3/21 (pelvic area and abdo). Saw specialist nurse 9/4/21. MDT requests chest CT scan. Why, I asked, when knowing my previous history (and mum had BC in the 60’s) wasn’t the CT done for the whole body? We don’t like to over test, came the reply.

In addition, the appointment to see the surgeon isn’t until 6/5/21 so how long will it be before treatment starts whether an operation to remove the lot or chemo? I’m fretting over the length of time it’s taking. Does this seem reasonable? I’ve expressed my concern to the nurse but other than suggesting complain to PALS there’s not a lot I can do. It’s a solid complex mass, size of a grapefruit with a few tiny nodules in pelvis, highly suspected OC.

12 Replies

HI,

SORRY YOU ARE GOING THROUGH THIS. ALL I CAN TELL YOU IS THAT YOU ARE YOUR BEST ADVOCATE. IT'S OKAY TO BE ASSERTIVE, THIS IS YOUR HEALTH NOT THEIRS.

I WOULD INSIST ON A PET SCAN. IT DOES THE ENTIRE BODY FROM NECK TO THIGHS AND IT WILL PICK UP ANYWHERE THERE IS A PROBLEM. I DON'T KNOW WHY THEY DON'T DO MORE OF THESE IN THE UK. MAYBE SEEK A DIFFERENT ONCOLOGIST IF

THIS ONE ISN'T SATISFACTORY. IN MY OPINION WAITING UNTIL JUNE TO SEE THE SURGEON IS RIDICULOUS UNLESS THEY ARE STARTING CHEMO FIRST. THIS ISN'T THE TIME TO BE PASSIVE. ARE YOU BRCA POSITIVE?

WISHING YOU THE BEST OF LUCK-

LEE

HI-

JUST SAW ON THE HOME PAGE FOR OVACOME, ON THE RIGHT SIDE IT HAS POSTS LISTED. ONE OF THE SUBJECTS IS "GETTING A SECOND OPINION". YOU MIGHT WANT TO TAKE A LOOK.

LEE

Whybirdie profile image
Whybirdie in reply to mupash

Thank you. I’ve been tested negative for BRCA. The more I think about it, the more I’m determined to push for some quicker action. Hubby’s on the job too. I will have a look at ‘second opinion’. Many thanks for your encouragement.Barb.

I think I had about 6 weeks from Dr visit to test completions, but was told at ultrasound which was after 2 weeks that it was oc, then waited 2 weeks with for CT and 3 for MRI. Various issues led to delay in chemo start for about another 3- 4 weeks. I have learned like others say you need to be your own advocate and push hard for appointments. Be as assertive as possible. I got to point where I went into clinics and spoke to administrators and had appointments brought forward ( I had to have a thyroid biopsy which was delaying start of treatment), I rang to find out how they were doing with biopsy results, went to chemo department to check I was booked in. I have learned you need to be on it and if I'm not up to it my husband assumes this role. Maybe get out NICE standards and draw attention to these. I agree with others also that maybe somewhere else can be quicker but be careful not to start a switch until you are clear they can be. Finally my surgeon came from another hospital, he only did consultations once a week at my hospital. If this is the case maybe ask to see him/ her in another hospital clinic? Good luck, wishing you the best possible outcome xxx

Whybirdie profile image
Whybirdie in reply to SASSY196

Thanks Sassy, that makes complete sense. BC clinics are one stop shops so surprised at the laid back attitude. I believe the surgeon is based at another hospital about 10 miles away so I’ll make that suggestion. I appreciate your advice and I’ll be on the phone first thing Monday (or hubby will).Barb.

SASSY196 profile image
SASSY196 in reply to Whybirdie

One stop shop makes much more sense. Good luck x

Firstly, so sorry you are in this position. I have had oc and bc it can feel like you are on a downwards slope. I agree with all the above comments, be assertive and read case studies so that you are armed with a smidgen of knowledge. I have sometimes paid for a private consultation with my onc or surgeon. You can mix and match with the nhs and sometimes, have to be careful what I say, I believe it has moved things on. A consultation can be under £150. Good luck Zsu

Whybirdie profile image
Whybirdie in reply to Zssu

Many thanks Zssu, it does upset me that I’m being put through another CT when it should have been done thoroughly first time. Sounds like they’d want to wait for that result before treatment, so frustrating.

Musash is right. Your body. Insist on warp speed.

Whybirdie profile image
Whybirdie in reply to Ruebacelle

I know. You’re all giving strength, thank you.

I was diagnosed quickly then everything was slo-mo before starting chemo. But by the sound of it, they intend doing upfront surgery, so thats a good sign I believe, its operable now and not needing a biopsy. I would source surgeons name and see if you can bring forward this appointment with a private consultation with him. I wish I had been more assertive at the outset, good luck.

Thanks Rose, I’ve got the name of his secretary, I’ll ring tomorrow morning. Sometimes I feel so resigned to my fate, other times raging angry that the NHS make it so damn difficult.

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