Time taken to start treatment: Hi all, This is... - My Ovacome

My Ovacome

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Time taken to start treatment

andrew12341 profile image
16 Replies

Hi all,

This is my first post here, but I've been reading threads for a week or so.

My mum is under investigation for suspected ovarian cancer. I feel like it is taking a long time to start the treatment, and every day we wait feels like a lost day, as I am always reading that acting fast is the key to beating cancer.

She first saw an oncologist on June 23rd. She had a CT scan on June 25th. This CT scan was discussed in an MDT meeting on July 1st, and then she saw the oncologist again on July 3rd. Today she had a biopsy, but we've been told it takes 1 week to get the results. She'll see the oncologist again on July 17th, so treatment won't start before July 20th (the oncologist has already told us that it will be chemotherapy first before any surgery).

This means it is nearly 1 month between seeing the oncologist and starting treatment. Is this normal? Can someone reassure me that 2-3 weeks is not going to make a difference to the success of the treatment?

It's difficult for us, because my mum is Turkish, and her Turkish family keep telling us that in Turkey the treatment would have started already. I keep telling them that things just work differently here, and we need to be patient.

Thanks,

Andrew

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16 Replies

HI Andrew, I am sorry you have this upset in your life. I know its not pleasant. The usual thing is that the oncologist discusses the scan with the MDT for the best possible outcome and plan for your mother. I agree with you that every place is different. I gather that your Mum is seeing the oncologist in ten days again. That is not a bad wait really. Perhaps you could go with your mother to this appointment as you seem fairly grounded. Think of any questions you might have as to treatment and side effects etc and take it from there. Wishing you and your Mum well, do come back on and we will support you and her on this site during the treatment.

Sunfleury-UK profile image
Sunfleury-UK

Hi Andrew, so sorry you've had cause to find this group- as well as the experiential knowledge here, Ovacome have a nurse-led helpline which is open during the week (office hours) and they have a great deal of specialist knowledge. I would also recommend Target Ovarian cancer's booklet 'What Next?' It has not only medical info and useful signposting but also insight into how your Mum may feel at various stages. I know it's been really reassuring to both women with the diagnosis and also those who love them. Wishing you, your mum and family strength and hope, Sx targetovariancancer.org.uk/...

babsclunn profile image
babsclunn

Hi Andrew I went six weeks to first chemo was diagnosed stage four but chemo shrunk the tumour enough for surgery and have been no evidence of disease for twelve month now

It is hard all the waiting for endless tests but keep strong take a day at a time

Welcome Andrew (and your mum),

What you describe sounds very standard in terms of the timing, as they work through tests and gather the information to map out the best possible path for your mum.

You've already had good advice about having someone with your mum and writing down questions as you think of it.

No disrespect to her family in Turkey, who I am sure mean well but have probably never come across someone with OC before, but some of the things we all learn on here are:

Ovarian cancer is a very individual disease leading to different treatment approaches needing to be worked out for each of us ( even if there are general "gold standard" approaches) and.....

There are not very many of us. The average GP will see one woman with OC every 7 years, I think and

OC behaves differently from many other cancers, so it's not possible to generalise from people's experience of other cancers or what the TV says about, for instance, bowel or breast cancer.

Please reassure your mum.

Wishing you both all the best xx

Boot1947 profile image
Boot1947

Hi Andrew. You sound like a lovely, caring son. The waiting is probably the worst part, but it sounds like your mum is in good hands. I was diagnosed Stage 3 on March 1 last year and didn't start chemo until May 1. I have been free of disease (touch wood!) since last August. And I couldn't have managed without Andrew, MY lovely, caring son!! Please keep us all posted about you and your mum - we're here to support you.

TinaB1 profile image
TinaB1

Hi Andrew ..

It all takes time when decisions are managed through MDTs because there's the waiting to get a case on the team meeting agenda. I can't really understand why the baseline scan can't be done before the meeting so that the results can be included as evidence to discuss but doctors use the CT as the start line once a person has been diagnosed so they can see how effective the treatment has been.

I think (and studies show this) that a patient who is managed by a team of professionals rather than an individual clinician has better treatment outcomes. In England, waiting times are longer if a patient is found to have cancer in a hospital without a specialist unit for a particular cancer. For example, in my case, it took four weeks for a referral once a tentative diagnosis was made when I was an inpatient at my local hospital. Then a Clinical Nurse Specialist from the local hospital had to join the MDT at the hospital I was going to be treated at and my case was delayed for a further week as she was off work unexpectedly. Then I had to wait for a laparoscopy date which added another two weeks. Then I had to wait for a clinic appointment to discuss treatment options.

I was operated on by a surgical oncologist/gynaecologist in the end, so I feel I was in safer hands in the long run.

It's not a perfect situation by any means but there are advantages of the MDT system and of specialist units.

Cre27 profile image
Cre27

I agree with all the other replies. This waiting is the worse time. It seems to go so so slowly. Your mum is so lucky to have such a wonderful son. My wait was 2 weeks after cancer diagnosis, they weren't sure whether it was bowel or ovarian, then had surgery for biopsies and stoma fitted, then 2 weeks for results then another before I started chemo. Felt like a life time!!!!!! But now through treatment and in remission for stage 3c ov. Stay strong you and your mum will get through it x

Begster profile image
Begster

I first ended up in hospital in the middle of April whilst there I had ct scan and fluid taken from my abdomen, I then had a Mri referred to onc that took three weeks for a appointment then waited another few weeks till beginning of June for cyst to be removed found out it was cancer a few weeks later x then a few weeks later more surgery then six weeks after that start chemo and 5 months later ned x it's a long process sadly x

LesleyGreengran profile image
LesleyGreengran

Hi Andrew. I agree with what others have said. It's important to take time to do the tests and examinations and they cannot always be done thoroughly any quicker. It's much better to be treated by a team - ours in Huddersfield/Halifax meet weekly so there can be a delay but the outcomes they have are equal to the best in the UK. It's natural for your mother's family to want things done quickly but I wonder if there's an element of the grass always being greener elsewhere. I've been told by several consultants that a few weeks doesn't make any difference to is effective the treatment is. I do agree though, with whoever said that they could do some tests before the consultant appointment though. I sometimes have to see the consultant, be sent for a CT scan and then have another appointment. I could tell them I need a scan - I've had ovca a while and had a recurrence so I've been through the system. The doctors and senior nurses don't always like us making suggestions that might speed things up.

citrine profile image
citrine

Hi Andrew.

I can only tell you about my own experience. I was diagnosed almost 4 years ago. I first saw my oncologist at the beginning of August 2011, had a biopsy on 9th September that year and started treatment a week later. (Certain dates will stay in my head forever.)

The biopsy was reported as confirming that I had stage 4 ovarian cancer. I finished treatment in January 2012 and so far have had no recurrence. I completely understand that you are feeling very anxious at the moment. I did feel frustrated

and worried until I actually got a definite start date though in my case it didn't seem to affect the outcome. I think your mum is certainly entitled to seek reassurance from her oncologist because I don't want to generalise from my own particular experience.

Wishing your mum and you the best of luck.

Mary xx

daisies profile image
daisies

Hello - what a horrible situation you are in and I do hope your Mum is coping with the diagnosis.

I just wanted to say - that it is better that some time is taken to have all the tests, scns, results etc done and discussed within a MDT - as starting chemotherapy, radiotherapy and/or surgery is a big step for anyone. Try not to take notice of the 'better' and 'faster' treatment you would get somewhere else, I did, as your Mum's confidence in her Doctor/Oncologist is what matters - if she is happy with them, she will be fine.

Regards, Maureen

andrew12341 profile image
andrew12341

Hi all,

Just wanted to say thanks to everyone for your replies. They have reassured me that the treatment is following the standard path and that Mum is in safe hands.

Thanks also to the comments referring to me as a wonderful/lovely son :)

I'm sure I will be posting again at some point to benefit from the collective wisdom of this group.

Thanks,

Andrew

Lily-Anne profile image
Lily-Anne

I saw GP in July, consultant in August, first op in September, cancer diagnosed, next op October, chemo January. I've been clear nearly three years (with a few hiccups along the way of course)

Don't worry

LA xx

totty profile image
totty

I was about 6weeks before biopsy, didnt have chemo til after op, investigation all in all started late September, had op 5th January 2012, started chemo in April, followed by rest of treatments so I think they are are working well to a standard format My thoughts are with you, keep smiling and positive Marilyn

thesilent1 profile image
thesilent1

Hi Andrew, the other ladies have said it all really. Your mum is in the system now and things are moving along with a plan in place. We will support you and your mum as much as we can. Ann

Hi Andrew, I was a little mifffed about the time taken from diagnosis to treatment taken for my wife. The oncologist basicly said they have a 62 day guide line from diagnosos to treatment and thats what they aim for.

Well it turns out that my wife is stage 4 and I can tell you if they had started treatment sooner than 62 days then perhaps my wife wouldn't be entering Paliative care now.

Best wishes for sucessfull treatment for your mum.

Rich

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