Debulking op cancelled, no date fixed for when ... - My Ovacome

My Ovacome

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Debulking op cancelled, no date fixed for when I can have it, feeling anxious

Callipygian profile image

Hi, I have had 6 chemos, 3 carbo and then 3 carbo plus taxol (am now into the 6th week after the last one). I was due to have my debulking op this Tuesday just gone. I was phoned on Monday afternoon by an appointments clerk who told me it was cancelled due to staff sickness, and that I would probably have the op this coming Monday. I was phoned on Thursday just gone by a surgeon, who told me that my op would not be next week, and that this was beause my original surgeon's mother-in-law was ill. I was then told that my op would 'most likely' be in November, but that he could not give me a date.

I am wondering if anyone else has had to go through this experience? Specifically, I am wondering if anyone has received a 7th chemo cycle during the wait, or even a scan, or both. I am very concerned that a 2 month wait(or even longer) could mean that the cancer has time to spread again, and that the good work that the chemo did might start to unravel.

I phoned Ovacome yesterday, and the worker was lovely, and understood my anxiety. She is going to try to find out for me next week just what is the optimal length of time between chemo and the op, which would have to mean asking a medical adviser. I myself have searched the internet for medical studies, and the ones I managed to find said that 4 to 5 weeks is the optimal time after chemo for the op to happen, and that there are various risks associated with a longer gap.

I have been in isolation for 2 and a half weeks, and dread the thought of not seeing anyone for 2 months will not help the anxiety I'm feeling. I was psyched up for the op last Tuesday, and now I feel more anxious than I did last Monday.

I did ask the surgeon who phoned on Thursday if I could be given one more chemo while I wait, to ensure that the cancer remains stable, but he said it was up to the oncologist (they are in 2 different health authorities because there are no gynae oncology surgeons in my health authority). I phone my named nurse who is attached to the oncologist, and left a message as there was no answer, and also emailed on Thursday. I emailed again yesterday when I had heard nothing back, and the nurse emailed me back late yesterday afternoon, saying she'd try to speak to the oncologist on Monday.

I know I have to try and be patient, and wait for people to get back to me (why do these stress-inducing things always happen not long before the weekend), but I thought it was worth asking if anyone had had debulking surgery such a long time after their last chemo. PLus, has anyone had a 7th chemo in these circumstances?

Thanks very much for reading.

35 Replies

I'm really sorry you find yourself in this situation which must be so stressful for you.I haven't been in your situation but just wanted to say it sounds as though you have approached all the right people so far.

I would suggest phoning your oncologist's secretary on Monday morning too...even though the nurse says she will ask on your behalf. You could call the surgeons secretary and try to get a firm date for your op too. I dont think it will do any harm to be persistant. As the saying goes...it's the squeaky wheel that gets the oil.

I'm sure there will be other ladies who will be able to give you more specific information and its great that the Ovacome team are helping you out.

All the very best to you.

Liz xx

Callipygian profile image
Callipygian in reply to Jacky5

Thanks for your support, Liz. I've never been given either of their secretary's phone numbers, but I guess I could go through their respective hospitals switchboards.

Jacky5 profile image
Jacky5 in reply to Callipygian

Yes that's what I did...asked to speak to so and sos secretary.I don't find it easy speaking up for myself but have always found all the staff to be helpful and sympathetic.

L x

Wow that’s really bad… I feel so cross on your behalf. This is a good time to throw your toys out of the pram… demand answers and don’t be fobbed off! I agree with others about contacting yourself…if you are UK you should complain through PALS and ask to be referred to another surgeon xx

Callipygian profile image
Callipygian in reply to Lyndy

Hi. the surgeon who phoned me on Thursday is actually the other surgeon, and I am now under his care, and he said there is no possibility of the op until 'most likely' November'. I even emailed Prof J's secretary on Thursday (60 miles away), to see if they could take me on for an op, as my GP had asked him for a second opinion about the op. but no answer from there either and his secretary doesn't work on Mondays. Yes, I'm UK, and Ovacome suggested PALS, and also the relevant CCG. If I don't get anywhere on Monday, I'll be contacting both on Monday evening. I phoned Macmillan national phone support line, and the nurse just said that this is the NHS situation, and said I should be patient. I don't think she understood how crucial the timimg of the op is, and what stress I'm feeling.

HiThis is totally unacceptable,it sounds as if your contacting all the right people.Have you got a nice gp who could help you try to get an answer about a date for surgery?

I would keep calling and emailing,basically kick off and make a nuisance of yourself until they listen to you.xx

Don't worry, I will. Unfortunately the weekend has intervened, which adds to the stress, as there's no way of contacting anyone now. I spent literally all of Friday daytime trying to contact people who didnt answer their phones and then subsequently emailing, and actually talking to Ovacome and Macmillan. There was no time left to phone my G.P. surgery. Ovacome are phoning me back on Monday afternoon.

It sounds to me as if you are doing all the correct things and chasing where you should be. I was scheduled to have 3 chemos and then surgery. I had 2 infusions and then suffered a perforated bowel which required surgery and obviously delayed my 3rd chemo. My 3rd chemo went ahead after a delay and I was given and extra one , number 4, before my surgery due to the delay. I then had surgery followed by a further 3 treatments. Total of 7 instead of the original 6 due to the delay. I do appreciate the circumstances are not the same as yours and the delay to surgery was for a totally different reason but in my case the oncologist did the extra treatment.

You poor thing. The perforated bowel on top of everything else. I'm glad you had the surgery, and hope you're doing ok now.

Yes fine thanks. Got lots of bowel problems still - on the surgery waiting list again to free adhesions and scar tissue but the main thing is I haven’t had to have further treatment for the cancer , so far, for which I am eternally grateful 🤞🤞

This is awful, I am so sorry. You seem as others have said to have been really robust in trying to address this. I was going to suggest PALs which I think ovacome also have. I would just keep being assertive. Hoping you can process things and thinking of you x

Callipygian profile image
Callipygian in reply to SASSY196

Thanks for your good wishes. It's the delay and the big gap between chemo and surgery that is really worrying. I've never heard of anyone having the op with a long gap after the 6th chemo. And this has come when my bloods had reached an acceptable level pre op.

SASSY196 profile image
SASSY196 in reply to Callipygian

I think if maybe you could get a date and then press for another chemotherapy. Not the nicest option. Or perhaps look further afield for surgeon. I am thinking Christie's will have multiple surgeons and I know Marsden do. I had Mr Barton at Marsden who is amazing. Maybe try to argue a case for another hospital to take you on, you are outside catchment but this is particular circumstances. I can send you address for Mr Barton secretary, if you want it pm me.

Callipygian profile image
Callipygian in reply to SASSY196

That's kind of you. I'm afraid that London is over 250 miles away from where I live, so that's rather out of the question. The nearest place is the Christie, which is about 70 mies away. I looked on their website, and they only have about 1 more surgeon than where I am supposed to get an op (actually 2 more, now that this surgeon has gone on leave). I imagine that their waiting lists and dates are filled with their own patients now. They have to set a whole day aside for the surgery, as I may well need a stoma (I have cancer around the bowel). I have pressed for another chemo, but that's down to the oncologist, whom I'm hoping to hear back from on Monday. I just thought that the wheels would have started turning on Friday. I shall spend all tomorrow fighting for something to be done, and sharpish.

SASSY196 profile image
SASSY196 in reply to Callipygian

XXX

I am with prof J at The Christie, I had my surgery done at St Mary’s hospital where most of his patients go . There are several gynaecologist surgeons there .Mine was Miss Holland , and she was lovely.

I know people complain to PALS , but I have read from a very reliable source that you are better contacting the chief executive of the trust .

Hope you can get it sorted . Make a fuss .good luck x

Hi. It's good to hear from someone who is with Prof J. I didn't know that ops were done at a different hospital. I was assuming that I would be having an op nearer home. Is it OK to PM you if I think of anything about the set up in Manchester? No worries if not.

That’s fine .

I suggest contacting local and national media along the story line of “The state of our NHS”. It is a hot topic and I suggest you ask for Newsdesk over the phone. Personally, I don’t find the mother in law reason adequate fir a life saving surgeon to down tools on you. Perhaps, if it were his own mum. How many other ops has put off for same reason? Where is his professional duty to his patients? A few hysterics over phone might be handy. Good luck in finding a speedy solution.

I must admit that, once the news had sunk in, I too was surprised at the reason, and perhaps even more surprised that the other surgeon had actually disclosed the reason. However, I don't know the exact circumstances, so don't feel I can judge him. Plus. of course, certainly where I am, you meet the surgeon once for about 20 minutes, so there isn't exactly time for a professional relationship to develop between them and their patients.

Interestingly, by the way he was talking on the phone, the surgeon who telephoned me last Thursday had no recollection that he had already met me in clinic in August (although most of the consultation was with his registrar, and he dropped in at the end). (I didn't remind him of this, as I couldn't see the point.) He himself was originally due to operate in September, but that op didn't go ahead because it had been arranged only two weeks after my chemo, and that was deemed too soon for my bloods to recover, and an appointment clerk phoned me to give me last week's date.

I'll see who, if anyone, gets back to me tomorrow before I do anything else (apart from phone or email those people again first thing).

Lots of good advice.PALs

I'd perhaps contact the Trust's chief executive directly alongside the clinical commissioning group ( CCG) Your local MP irrespective of constituency boundaries should also be in a position to ask questions of the trust.

Yes, it's probably a good idea to fire on all and every cylinder I can think of. I'll have to see if I can get any details of the chief exec of the other trust. Thanks for

the suggestion!

Perhaps try contacting your local M.P x

I had thought of this. too. Of course, my M.P. is not the M.P. for the place the op is due to take place, as that's in a different Health Authority. I'm so exhausted by all this chasing up I'm having to do. It seems to have been a general feature since I was diagnosed. Being treated between 2 different Health Authorities makes for double the work (and double the travelling time.)

You are far too sweet and reasonable! Regardless of the particular circumstances of your surgeon, the NHS should not be leaving you with no date at all at this point in your treatment.

I think I'm just so exhausted after all the effort I feel I've had to put in throughout the last 6 months. I'm not really sweet at all lol. If I get no joy tomorrow, then I shall go in all guns blazing, as I am very tenacious. It's interesting that no-one else has replied who has been in the same boat as me, so perhaps this is a very rare occurrence?

You sound like me - trying to get hold of people and not succeeding is so frustrating and sadly, not an uncommon experience these days. Prior to Covid, what's happening to you would be an extremely rare event; unfortunately, the waiting lists are now so long, and some hospitals still somewhat over loaded with Covid, that this is not so unusual any more, even with cancer patients. Essentially, most hospitals are barely coping with demand; I imagine it only takes 2 or 3 emergency surgeries to set back those on a list waiting for surgery, and because people have not been seeing consultants and doctors much during the last almost two years, there are likely more emergency surgeries arising. Regardless of the reason, it's still very difficult for you - not having a date to aim for in particular is a stress, because it's not just the surgeon and hospital who needs to prepare for the surgery, but you do too. It's not as if you're having a tooth removed and you can pop along when there's a sudden cancellation and get it done in an hour, is it...

Irrespective of any efforts you intend to make to sort things out on Monday, I'd be constructing a complaint email to the PALS department of the operating hospital and getting that off today - they usually respond quite rapidly to email complaints. You may not get hold of them on the phone either - many of the phone lines are only staffed at certain times, so it's 'leave a message' time, which is stressful if you have a serious issue like yours that needs addressing. The last time I contacted PALS, I left a message and emailed - they emailed back within 3 days, but I found out later they never picked up my phone message till 8 days later... Even if things get sorted tomorrow, I'd still feel the need to send a carefully constructed email 'rocket', detailing precisely what you want to happen, to PALS today, if only to relieve my own stress, not sure I could cope with the stress of just waiting till tomorrow...

Certainly the question about having another chemo treatment needs to be put to your oncologist asap; if you manage to speak to the secretary, ask for her email address too, then any further queries you have you can just email rather than getting stressed out waiting to ring during working hours...

I hope things get resolved soon, good luck,

Miriam

Hi Miriam. I am already in the process of constructing an email for PALS, so thanks for reminding me that I need to finish ot and send off today preferable.

Also, thanks for the tip about asking the secretary for her email. It's strange no consultant around here gives you their secretary's email, yet at the Christie, the consultant's secretaries' email and phone number are all online for anyone to see.

If I do have to have another chemo. I'll be so disheartened too, as it has always taken a few weeks for my bloods to get high enough for the next chemo or indeed the op (certainly with the carbo and taxol).

We'll see what tomorrow brings. Watch this space......

That sounds so frustrating! I think if I were in your position I would insist on another round of chemo in the interim. I wouldn't just take "no" for an answer if that was the oncologist's response. I wish you the best in managing this stressful situation!

Hi, yes, when the surgeon told me, I did have the presence of mind to say to him that I wanted another chemo , after asking him what a 2 month wait between chemo and the op would mean (to which he replied that there was no evidence for that situation, and no figures even for what 6 chemos pre op mean, as all the research was based on op before chemo, or op after 3 chemos, then 3 more chemos).

If my oncologist will not let me have one, I will have no option but to go elsewhere as quickly as possible. I asked the surgeon what would 2 months mean for possible regrowth, or even mean an op would no longer be possible, and he simply said he could not give me an answer, as there were no figures.

Yes, it's stressful. It's good to have support from people who understand, though. It really helps to ease the stress. Thanks so much for your good wishes.

Lots of good suggestions for people to chase, and it sounds as if you are thinking the right way in terms of bugging people until you get a reply. The Christie may sound as if it's no better staff-wise than your local hospital, but it's a major cancer centre and the surgeons there have an excellent reputation. I'd definitely ask to be seen there if your local hospital can't (or won't) give you a new operation date. It's tough to have to advocate for yourself when you're not feeling well, but I'd really encourage you to push as hard as you can.

Thanks for your email. I'm thinking that I'll phone the G.P. surgery first thing tomorrow, and see if I can get a phone appointment with my G.P. asap, and ask him to also get involved, and re-refer me if that's needed. Looks like I'm in for another extremely busy day. I need a P.A. lol.

Hi

I can imagine how worried you are. If it is any help, following my op the Senior Cancer Nurse rang me to sort my date for my next chemo . I was worried that it wasn't within 3 weeks of the last treatment, but he said I needn't be as the chemo stayed in the body for between 6-8 weeks.

Would definitely chase it as you are concerned. Hope you get the op sorted quickly and are on the road to recovery. x

Callipygian profile image
Callipygian in reply to LesleyGB

Hi Lesley,

Thanks. Sorry, just seen your reply, as I've been rattling off emails and been on the phone all day.

Ovacome are very kindly going to ask one of their expert panel to find out the answer to this very question about the long gap between chemo and surgery, so I shall have to try and remember to come back and let pople know what I am told, in case anyone else finds themselves in my particular boat (although it may be better to let Ovacome do this, in case I get anything wrong).

On a relatively positive note, (though I'm not holding my breath), I have been given a date of November 1st for surgery (although I shall believe it when it materialises, as this is the fourth date, don't forget. Plus the date is just before the start of my ninth week post chemo. I'll explain below what happened today.

So, with Ovacome's help in finding an email address, I rattled off a letter to the Chief Executive of the trust where the surgery is due to take place. I also found out this afternoon (after several emails to my named oncology nurse) that the surgeon had not contacted my oncologist about the cancelled surgery!

I have no way of knowing just what led to the surgeon suddenly deciding that he could move his diaries about, but the outcome late afternoon (sent in a brief email by my oncology nurse, not the surgeon's nurse) was that I was given the date of 1st November, although this is the fourth time, so I am not counting my chickens yet.

Thanks for everyone's support! Watch this space....

LesleyGB profile image
LesleyGB in reply to Callipygian

Thanks for your email. As a friend would say, it seems like it's a mucking fuddle! Do they not realise how stressful all the not-knowing and delay is to us. (I am lucky that mine all went as planned). I hope your 1 November appointment is now cast in stone - it certainly should be. Good luck with it all and let us know what happens. x

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