Totally confused

[bamboo89]

I'm 67 years old. I had debulking surgery in January, on the understanding I'd most likely got epithelial serous ovarian cancer which had migrated to the inguinal lymph node and differentiated into non small cell neuro endocrine cancer. I'm back from my follow up appointment today, where I've been given conflicting information. The paperwork says the diagnosis is neuroendocrine non small cell cancer, which is usually in association with epithelial ovarian cancer, but that there is no evidence of the latter in the removed tissues they examined; but the MacMillan nurse told me it was ovarian, and the oncologist is planning on using treatment standard for ovarian cancer (taxol/carboplatin and avastin).

Anyone else with a similar situation? I can't decide whether to just give in now and go for palliative care (though I'm told the neuroendocrine cancer is aggressive) or whether to go with the chemo they've suggested, even though they and I are not sure its the right treatment and even less sure of any possible success or outcome. The chemo sounds appalling, and it will be for a long time...

[Katmal-UK]

Hi I think you need to sit down with your onc and discuss what is going on and for them to explain more clearly. Obviously it's your decision regarding treatment but I can tell you (being totally honest) it's not pleasant but it is totally doable. Carbo/Taxol is every 3 weeks for 6 cycles and the Avastin is added for the 6 cycles and then every 3 weeks for a further 12 cycles (that's usually the norm). Once you are on Avastin alone that is even more 'doable', in fact I worked full time on Avastin, taking a day off every 3 weeks to have it administered via a drip. There are side effects but as you can see nothing that I'm sure you wouldn't be able to cope with. Do let us know how you get on with getting more information. Sending you a hug. Kathy xx

[bamboo89 in reply to Katmal-UK]

okay, thanks for that - I'm worried about how I'll cope when going through chemo because I live alone, that's one of the issues. Plus I hate doctors and drugs and medicines and being mucked about with, but then I guess most of us do. Also a bit confused as to why they put tubes into your chest from two different places, as well as into a drip in the arm when giving the chemo, but I can ask the MacMillan nurse about that I suppose.

[Katmal-UK in reply to bamboo89]

Hi again. Never heard of having tubes in yr chest..... I do feel that nothing has been explained correctly. Did you have anyone with you? As for living alone Maybe you should speak with both MacMillan and yr GP to see what help is available for you. I TOTALLY get where u are coming from regarding hating drugs etc and being mucked around with. I hate it but what I have gone thru 3 times means I am now in my 11th year. Please speak with someone before making your decision. If you decide after starting chemo you really cant cope then you can stop at anytime. Sending you a hug. Kathy xx

[Lyndy]

Hello! Sorry to hear you are in this situation. As Kathy has said please ask for more information about what they think it is...what they are hoping to achieve with the chemo and what if anything they are still not sure about. This will give you a much stronger position from which to make a decision. Please don’t sit at home alone and decide to give up ❤️

I would suggest you talk to your team, ring the Ovacome helpline, speak to local Macmillan or CNS support before deciding anything. Tell people that you are on your own and ask what support is available.

We can help too when it comes to the detail.

Finally... I had carbo/taxel and then Avastin....there was no day on which I couldn’t either walk to the shop or ring for a takeaway!

I was admitted a couple of times with an infection but I could have asked for an ambulance or taxi to get there. I was not sick the entire time xx Lyndy

[January-2016-UK]

I agree with Kathy, you need a very clear discussion with your onc as to exactly what your diagnosis is and if there is any doubt, why the standard treatment for ovarian cancer is being chosen. You are also entitled to a second opinion. Although this may cause a delay, it may be advisable if you are not being treated at a large teaching hospital. When is it proposed the chemo should start?

As Kathy says, the chemo is totally doable. It's not a walk in the park, depending upon the side effects you may get but you will get through it. Ask your friends to rally round. It's quite important to ask them to do specific things, such as some shopping, cooking for the freezer, come and take you out for a coffee and cake for an hour. Or even go for a little walk in the local park, etc, It helps to get outside at least once a day.

I don't know what the tubes in your chest you mention are. Was there any other info given?

[bamboo89 in reply to January-2016-UK]

Thanks for your response, very helpful re the chemo. As for why they've chosen this regime, I get the impression its because they're not sure what to do so are simply choosing what they have to chuck at mine to see if it works or not. I shall be insisting on more information - I have to say (I'm under Queen Charlotte's at Hammersmith) I don't feel confident in the hospital and have not felt particularly well informed at any stage so far - what I was told when I decided on surgery appears to have been someone's best guess rather than actual solid information. My cancer is neuroendocrine, yes, but that 'never' starts on the ovaries; but that's what they found in the ovaries and in lymph nodes, so it was simply assumed there was also epithelial serous ovarian - which there isn't. Admittedly, whatever has happened to me is 'rare' and 'weird' (sic), so maybe that's why I'm not getting any good guidance...

[Hidden in reply to bamboo89]

It's tough being in a club of one! I do agree with January that a second opinion, given your rarety, might be a good idea. You've got several London hospitals with specialisms: Marsden, UCLH, etc. Your oncologist won't mind and may welcome it. I think at first diagnosis, none of us, however common our features may be, feels totally on top of what's being proposed or why, so don't be too hard on yourself. Best of luckx

[bamboo89 in reply to Hidden]

Thanks for your response. I have today written to the NET Patient Foundation - they have got back to me and asked for permission to lay my case before their panel of experts, which I have gladly given. They tell me that neuroendocrine cancer can start in the ovaries, but it is extremely rare, there have only been a handful of documented cases. PET scan on Thursday might just reveal an as yet undiscovered primary neuroendocrine tumour elsewhere in the body though, which might provide a little more clarity, otherwise, I'm hoping for some sort of advice or opinion from the NETs experts...

[January-2016-UK in reply to bamboo89]

Hope the PET scan does reveal the primary. And that the NET Patient Foundation comes up with answers also. You've done well to pursue your request for a proper diagnosis. I had a very quick look on line and the chemo does seem to depend upon where the cancer originated. It's not easy waiting for answers, in fact it's really hard.

Have you recovered well from the operation?

[bamboo89 in reply to January-2016-UK]

Reasonably, in a lot less pain, though now its easy to forget the surgery and make a movement or do something that hurts the wound! Unfortunately, my back's playing up now so I can't walk properly - but that sort of thing is not at all unusual for me, its just something I don't need at this time. Never rains but it pours, does it!

[antifer1234 in reply to bamboo89]

Oh you poor thing being on your own. If you say the area you live someone on here may be able to meet you for that coffee and help you to not feel so alone. I am in Worcestershire and I guess you are London way. I went to Newcross Wolverhampton to start. As I was with BUPA I transferred to the Marsden Chelsea and haven't looked back. Use this site, I too do not have any experience of tubes in the chest just the cannula which is literally a sharp scratch and you will take it in your stride I'm sure. Use your Mcmillan nurse they are great for explaining things. Keep talking to us it really does help.

Love anthea

[bamboo89 in reply to January-2016-UK]

Re tubes in the chest - I misread the information - there are three ways to deliver the chemo, and two of those are tubes in the chest, but primarily, a tube in the arm, so not all three at once! I did ask why they were using the standard treatment but didn't really get an answer - I got the distinct impression that they're still unsure what's going on and are just going to chuck whatever chemo they've got at it hoping it'll do something, cos that's what they've got in their armoury. I said something similar to the onco - she prevaricated, but did not actually disagree. Very unsatisfactory, I can't say I've been thrilled with the process at Queen Charlotte's, its even difficult to get hold of the MacMillan nurses there, you have to wait for them to call you back the next day. Thanks for your advice...

[Hidden]

I agree with the ladies above, you need clearer information. Carbo taxol and Avastin is doable, can be hard but you will be given tablets for nausea and constipation and use as necessary; You only get one really bad day during a cycle. Okay your life is messed up for five months or so but it will put you into remission. No doctor can give an accurate time frame of remission as they can often get it wrong. Do ask your Macmillan nurses to see what supports are available, have you some friends who can help with shopping on the bad day or two;?

[bamboo89 in reply to Hidden]

Yep, there are people I can ask to get shopping. I'm just not convinced what they;re offering is the right way forward, given the conflicting information I've got... will be pursuing that with the MacMillan nurse when she contacts me tomorrow.

[CallmeMum]

Hi lovely,

Although you live alone do you have a support network? Although I’m not 100% I think Carbo/Taxol is just standard procedure for most cancers. My special person lives alone and had Carbo/Taxol and she was fine. As Kathy has said treatment is your choice and you need to get more clarification with your team and if you’re not happy seek a second opinion. Just don’t seek an opinion from Dr Google he’s out of date and won’t give brilliant statistics. Good luck xxx

[bamboo89 in reply to CallmeMum]

A bit of a support network, but not a major one unfortunately - all my long standing friends live miles away in different areas of the country. I have a son, but he works long hours, and a couple of neighbours who'll do a bit of shopping for me, but apart from a sister who will stay over a weekend when she can, that's it I'm afraid. I've always been a fiercely independent soul...