I’ve read your stories and you all sound so brave and so positive but I’m fighting negativity as my experience of doctors has been pretty much all bad.
I’ve been diagnosed with cancer of the uterus, both endometriod and high-grade clear cell carcinoma. Suddenly in May 2020, they decided I should get a two-week referral, having not bothered before. A doctor failed to refer me in 2017 and 2019 despite my having the same symptoms.
I had a total hysterectomy, lymph glands checked and omentum. They found no cancer elsewhere and claim to have removed it all. But they want me to have chemotherapy anyway and I’m scared and unsure. I have to make my mind up.
My experience of the NHS so far has been like entering chaos – too much to go into here.
This is just an appeal really to anyone who’s had experience of cancer and cancer treatment. I’m in a quandary about whether to allow people who I currently have no faith in whatsoever to determine the course of my life. Saw a consultant who answered every question yes or no, without attempting to explain anything. The one thing I did finally grasp is that with chemo I have a 25% chance of the cancer returning, but without, the risk rises to 35%. They are booking appointments for me all over the shop, with no hospital department having any connection to the other. Sometimes I receive a letter the day after I’ve been at Guy’s to tell me I had another appointment there that day too. Then they insisted I come in again. During lockdown I ended up making about 10 trips to 5 different hospitals on public transport prior to having a 4-6 hour op.
I know, sadly, several people who have had cancer and chemo, been given the all clear and then had the cancer recur. The health professionals’ statistics call five years survival – that’s surely only delayed death. I’m confused. and have honestly found no one who can help me.
I realise that I’m lucky they could cut it out but I’m conscious that cancer doesn’t know it’s cancer, it’s just a collection of cells. I think mine’s been well-behaved generally and until I had the op, I felt fine. Now my worry is that if the chemo drugs go after the cancer cells, the cancer cells will fight back and it’ll be like stirring a hornet’s nest.
Not to mention the side effects and the time spent in hospital. Is there anyone here who’s had all the cancer removed who hasn’t opted for chemo?
Cheers
CAG
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Was Guys your original diagnosing hospital or a second referral? I was thinking that you could get a second opinion now and see what they say about chemo.
Alternatively, why not ring the Overcome [edited by moderators] helpline to talk it through? I think clear cell and chemo is different to hgs which is the type most of us have... so talking to a specialist in clear cell might help you decide xx
Hi Lyndy, Thanks for responding. Sister has just stepped out (second walk since surgery). She was diagnosed at the Princess Royal in Locksbottom and the totally unsympathetic consultant there referred her to Guy's for treatment. A friend had already told us, 'If it's serious they'll send you to Guy's' so that wasn't very reassuring. The original consultant basically left it up to the Guy's team to decide on chemotherapy. Her oncology consultant was, if anything, even less sympathetic, as she describes above - and thus failed to make a good case for chemo. Yes, maybe she needs to speak to a specialist who knows specific statistics about the recurrence of this kind of cancer. Thanks. xx
Your choice of course but were it i i wd do a round of chemo. I fast 24 hrs before and after w liquids herb teas papaya leaf tea soy milk water veg consomme. This helps w side effects. [I think] papaya leaf tea helps platelets. [For] neuropathy [I] try 5g glutamine once a day amazon has it. Good luck amd so distressed you have hsd such a disastrous experience with nhs. I am in france tbings go much more smoothly
*this reply was edited by moderators and the edited text replaced with the text in square brackets*
Thanks, Ruebacelle. That's what most people have said to me, that if they offer it, I have to take it. Yes - I have a friend in France who's had breast cancer but is now clear. It's just that Guys can't seem to organise anything efficiently. I'm told to self-isolate for 14 days before a procedure (which they won't name) 5 days before they want me to have it. I say 'But I wasn't notified about a procedure' and am answered 'I'm notifying you now'. Either their maths is really bad or they think I have a time machine. Every encounter has been like that. Every time I turn up anywhere, they act like they've never heard of me. I think it's because I've been sent from pillar to post. They couldn't administer a medicine they themselves prescribed for me because they didn't have authorisation ... The consultant has been the opposite of simpatico, not reassuring in any way. I will take your advice on board.
I, personally, believe that the chemo is the second part of the two pronged attack treatment plan.
Chemo doesn’t stir up a hornets nest, it goes after the hornets and does it’s level best to kill them.
Statistics are just that, statistics. Many are way out of date and, depending on the source, often spurious. Avoid Dr Google, the information there is incorrect.
Don’t forget that hindsight is a wonderful thing and, if you choose not to have chemo and have a reoccurrence, you would possibly regret not having the treatment in the first place. If, however, you have chemo and recur then at least you gave it a fair crack of the whip.
Nobody else can make this decision for you, you have to weigh up all the pros and cons and make a decision, alongside the professional advice, that you’re happy with.
Thanks, Jane. I suppose I feel that my consultant doesn't give a damn whether I live or die. No one listens to what meds I'm on - they're not interested and this meant I got very low on potassium. I've never had a fast heartbeat but because of their various failures to draw blood - it took about 40 minutes from the cannula in the end - my heart rate went up to 126.
So many things have gone wrong so far that I'm scared what they might do to me if I opt for chemo.
I do appreciate that many people here are in a far worse situation. I have contacted Macmillan too and they're sending me some info but I feel like I'm being rushed by the hospital to make a decision.
This is a bit confusing and I've got lots of questions - usually chemo is offered because they suspect or know it has invaded other tissues in the body away from the point of origin, such as lymph nodes or omentum or elsewhere. If they're offering chemo, but are saying the cancer was contained in the uterus, that would suggest they think its spread somewhere or other, otherwise they'd be using radiotherapy, which is a targeted therapy on one area of the body. My mother in law had cancer of the uterus - she had the usual surgery, followed by 6 weeks of radiotherapy, so why aren't they doing that if it was contained in the uterus? Were the fallopian tubes and ovaries cancer free? What stage did they say the cancer was?
I was also under the impression that clear cell did not respond too well to chemotherapy anyway, so are they just offering chemo as a sort of insurance? Which chemo are they intending to use? If you don't have an oncologist you like and can talk with, then consider asking your GP or the current hospital to be referred elsewhere (Queen Charlotte's at Hammersmith, the Royal Marsden maybe) for a second opinion. The other thing to know is, you should have a specialist nurse, a CNS or Macmillan nurse/team at the treating hospital who you can ring and speak to. They will have access to your whole record and can organise/reorganise appointments, transmit questions or messages to the oncology team, and often answer your questions themselves. They are a valuable resource when you have cancer, though for sure, some of them are better at the job than others, as always in any field.
To answer your actual question, yes, I am someone who refused adjuvant chemotherapy (that's the chemo they offer within six weeks of your surgery, which is presumably where you're at right now). I have a different form of OC to yours, and it was late stage (Stage 4b) and had spread, so I had the surgery with complete removal of all cancer, but after lots of questions to the hospital team, and tons of research I did, I couldn't see the point of having chemo, especially at my age (now 70) since it was highly likely it would return with or without that adjuvant chemo anyway.... I was told I could expect the cancer to be back within 6 months without chemo, but I got longer than that; I had the surgery in January 2018, and by early March this year, I had ascites and the cancer was active again. I had decided to let the cancer do its thing, with palliative care - unfortunately, Covid and the chaos its caused had other ideas. My treating hospital temporarily stopped draining ascites in early March, just before lockdown; my local hospice and hospital similarly were over run with Covid cases and services were signifcantly reduced. However, my cancer hospital was prepared to give me some chemo, despite the increased risk of Covid (because I was dying anyway from the cancer) which would clear or reduce the ascites. I didn't want the chemo, but finally did agree to have a single chemotherapy agent only, carboplatin, because the alternative would have meant a very uncomfortable death, rather than the easing out with palliative techniques I had planned. That particular chemo itself was doable, not too bad at all.
I have had 5 sessions of carboplatin - it has had a significant effect on the cancer and knocked it back for a while.I will say I do not regret for a moment not having that adjuvant chemo back in February 2018; I had two years of normal life, doing whatever I wanted whenever I wanted, and only periodic check ups and occasional scans at the hospital rather than frequent treatment/appointments. And I knew the cancer would return, adjuvant chemo or no adjuvant chemo.... and I, too, am not someone who believes doctor always knows best, for various historical reasons...
However, you are likely much younger than me; if its true there was no spread of your cancer, and its early stage, and if you can gather sufficient information that chemotherapy would be helpful to your long term survival, then its probably worth doing. But there are lots of questions to be answered, the first being the ones I mention at the top of my post... There are two routes through this - you either just go along with what the doctors say, or you research and inform yourself and get the answers from the medics you need to make a decision and decide for yourself what you will do next. From the research point of view, Google is useful, but make sure the resources you look at are valid ones, such as Pubmed or other scientific info. It's not easy, because the medics try to rush you through on the conveyor belt of cancer treatment, but you can call a halt while you do your research and think what questions you want them to answer before you decide. We are either simply the subject of, or we are party to, any treatment that is offered - being party to means you have worked out for yourself that you will agree to some or all treatment, and taking that route often means getting the medics concerned to recognise you want a role in the decision making process, which means they must be as informative as possible because you have already informed yourself and asked the right questions, and you must become possibly 'difficult' in their eyes. I was told I was difficult by one Macmillan nurse in 2018 who said, memorably, 'you ask for information no one else asks for and say the things that no-one else says' when explaining why she found me difficult. All I know is, the squeaky wheel gets the oil....
The other thing you can try is ringing Anna at Ovacome (this site in other words); she is helpful when you're confused and is well informed. I have sent you a private message too...
Well I only learnt yesterday that it was Stage 2a. They claim they've cut it out and that the chemo will be preventative just in case it's got into the blood stream. I had uterus, cervix, ovaries, etc. all removed. I'm still recovering from the hysterectomy and now face chemo which will take up the rest of the year. I'm 57. I've always had problems with my periods, menorrhagia for years and finally hit the menopause with absolute relief that it was all over and now this ...
Yes I feel like I'm being treated as a cancer rather than a person and my consultant just dismisses my questions with a toss of her immaculate head of hair. My CNS has been useless if she's the one who's supposed to make sure I know about my appointments. One minute I'm told there will be no face-to-face then that I have to rush into London for one (while self-isolating) only to discover that they weren't expecting me. ,Got back to learn the next day of the other appointment. Went up again. And even though I've pointed it out, it nearly happened again this week. No communication at all. In hospital I had to keep reminding the nurses of things they had to do (dressing change, urine sample) and never felt I had an advocate. I thought I would at least meet my CNS but she works from home so, with Covid, I had no visitors, no advocate and every single minute there was a battle.
It's interesting what you say about clear cell and chemo. I'd like to find out about that.
I'm afraid Covid is the culprit in terms of being able to get hold of people easily, as well as mucking up appointments, insufficient staff, staff being way too busy and just causing general mayhem- I got an email appointment to attend Hammersmith hospital last Tuesday. I'd already been told I would actually have to attend to sign consent forms in case I decide to take up their offer of Rucaparib, now I've finished chemo, but that evening, I got a text telling me not to attend, I would receive a phone call instead. Well I had to ring anyway because, although the email said it was at Hammersmith, I'd been told it would be at Charing Cross - when I rang, it was at Charing Cross, and yes, I should attend regardless of the text. Next day, I got another text telling me not to come... I ignored it and went anyway. Because this had happened before, at the start of lockdown, email appointments, text to say don't come, I suspect its now necessary to check by ringing up to see if you actually should attend or not, unfortunately. Whilst a telephone appointment can work well, if they want you to sign paperwork, examine you or they want a scan, well, then you have to go to the hospital. And yes, some staff are working from home... Acquiring the email address of the Oncology secretary is also very useful, cos if you can't get anyone on the phone, you can email them instead, and they will pass whatever it is to the Oncologist.
With the extra info you've given, sounds like they want to give you 'mop up' chemo (my term); when you have cancer surgically removed, tiny fragments, or just cancer cells from their cutting can end up in the bloodstream, and the chemo should kill those off before they anchor themselves anywhere else and start growing. Which is probably a good reason to have some chemo, as you're Stage 2 and it wasn't anywhere else, hadn't spread. I've never been clear what the letters such as 'a' mean though, as in Stage 2a... or 4b or 3c, I keep meaning to ask about that....
I think, in your position, I'd probably have chemo, though I'd want to know which one/s they want to use... some are more heavy duty on the side effects front than others. On the other hand, if the side effects are too awful, you can always stop or get them to reduce the dose.
Thanks, Miriam. That's so helpful. I have got my nurse's email. I'm old-fashioned. I don't like talking on the phone but also, we had a shock with my Dad's cancer because we initially thought it was bad but spoke to his nurse on the phone and she said it was completely treatable and curable so we stopped worrying for a bit. Later no one would admit to saying this and I have the feeling she had the wrong patient file. He died about a month before I was diagnosed although not from the cancer.
I will be given paclitaxel and carboplatin. I think you're right about the mop up but it's very confusing when they say they're sure they've taken it all out but you still need chemo.
I feel for you the position you're in too and am so grateful you've taken the time to respond.
Sorry to hear about your Dad, but possibly the nurse was right in what she told you, since he seems to have died from something else, not the cancer. Either way, it's still a heavy loss for you.
You're a braver woman than me - paclitaxel is the one I refused, figuring, at my age, I've got enough trouble with arthritis and peripheral neuropathy already, thanks, and anyway, my cancer will return whatever chemo they used, being so late stage. This is not the case for you, you have a chance to clear it completely and with luck, you won't get that sort of trouble on it. I wish you well with the rest of your treatment
Hello Miriam. I read with great interest your reply to Candyapple. I’m 69 and had debulking surgery in June. My surgeon/ oncologist spent six hours removing all my lady parts, appendix and omentum. Covid delayed my diagnosis by about two months. Anyway, my surgeon said that although my OC is aggressive with likely metastasis to the lungs, I had a “fighting chance” for remission. I was ready to give up after the awful post op pain. I’m in the US where there is an opioid epidemic and hospitals are afraid of creating drug addicts. There was none of that “resting comfortably” for me. But I let them install a port. Then they wanted to do a needle biopsy of my lung. I refused because I knew if the procedure caused a collapsed lung, I would be hospitalized again and in agony. So I had one chemo at that hospital and decided to switch oncologist and hospital. I really like the new hospital and have confidence that the new oncologist will not let me suffer badly in I am hospitalized again. Plus the new hospital has a solid palliative care program. I’m in the states and what saves us seniors here is Medicare. I’m thankful that I am retired and my hear goes out to the younger women battling this disease. Frankly, I wish I lived in a right to die state such as California so that when my time comes, I can leave on my on terms. I appreciate your advice and insight and wish you well.
Phew, with you on that one wholeheartedly (your penultimate sentence), wish that was an option here, I think it's outrageous, nonsensical and a fine example of old fashioned, muddied thinking on the part of politicians that we in the UK have no options in that regard. We keep trying (various court cases) to change things, but so far, no luck... Seems ridiculous to me that in cases of serious, terminal illness, some choice about when and where is not a right for those that want it. It's not death that's the problem, after all, nothing has ever been more certain for living things than the end, meaning ultimately, one way or another, no one gets out of here alive, do they, but its the manner of it we older ones all worry about, really...
I am sorry to hear you found your surgery so painful afterwards - I woke up fitted with a morphine pump after mine, which I'm sure helped. Also helps to wipe your memory of it, don't remember much about the first couple of days after surgery other than the very dry mouth morphine causes, till they removed it! After that, it was just paracetamol (tylenol where you are I think), no opiates. I am glad you're confident in your current medical team, as well as having the option of good palliative care for later, that's very,, very important ... I hope Medicare survives in its current form, though I think its actually Medicaid that's more under threat isn't it. I have watched with interest what happens in the States politically for the last few years, not least because the way things shake out over there seems to be what eventually happens here too, especially now. I suspect the opioid crisis there is primarily due to the private medical care/drug system and the ease of access to that type of drug over there; it's not the same here (yet) but medics do seem to have a penchant for giving out paracetamol like packets of sweets, and frankly, as painkillers go, I find its about as useful as having a drink of water, so hardly ever use it. I recall I could not dissuade them from giving me two packs to take home with me following hospital discharge after my surgery. They sit, untouched and ignored, in my medicine cupboard as we speak; when they expire, I will pass them to the local pharmacy for disposal, what a waste...good thing they're so cheap, at least.
If you live in a State where cannabis is legal, full spectrum cannabis oil can be very helpful for general discomfort, pain relief and anti nausea (this is another option not legally available in the UK too, sadly). I hope you cope with the chemo well, and that you get a good length of time being healthy and living more life... thanks for your good wishes.
Hi. I am sorry that you are having such a bad experience with your treatment. After 3 cycles of chemo and the debulking operation I have been told that the cancer has all been removed. However, I am still completing the chemo and immumotherapy - I understand that this is the 'gold standard' treatment for oc. The chemo may not affect you badly - I was expecting to feel horribly ill but only had tiredness and very achy legs for a few days. And the cancer nurses really take good care of you. As someone else, said it is your choice but I wouldn't let your past experience stop you from having further treatment which could have a really good outcome. You don't say how long the chemo will last - but the time goes so quickly and it WILL end, hopefully leaving you to get on with a healthy life and put the bad experience behind you.
Thanks, Lesley. Yeah. I would really like to go to the chemo dept and meet the people there. So far, I've been told that Guy's is very good but only experienced the opposite. Everyone's very matter of fact. I suppose they get used to being like that. I don't think my special nurse is doing what other people's do, e.g. the missed appointments. I've been saying it must be someone's responsibility to inform me, if I don't get a letter or a text, how am I supposed to know and she said I could call her to find out. So I should ring on the off-chance that they've made me some more appointments? Doesn't make sense. I guess I'm just worried that it'll be exactly the same with the chemo team.
Hi, firstly I’m really sorry you’ve had such a bad experience and there is just no excuse for that. I’d certainly be asking for a different consultant even if that be a different hospital.
I had uterine and HG clear cell OC and had my op first followed by chemo and radiotherapy. It was described to me as belt and braces as whilst they remove what they can see, there could still be cells already roaming around and these need to be killed off. I was recommended the dual dose of Carboplatin and Paclitaxel (Taxol) although could have just had Carbo which meant I wouldn’t lose my hair...now that caused more tears than diagnosis did!
I opted to chuck everything at it as even though it’s a bugger of a disease, if I hadn’t I know I’d always be thinking ‘what if’. That’s my story though not yours; treatment or not is always your choice.
Step one is getting a new consultant though as the right one will make you feel in a much better place x
Thanks, YP. I am veering towards having the chemo but will be asking more questions. I'd really be interested in finding out if anyone on here has had treatment at Guy's and seen the same consultant, whether she just dislikes me or is like this with everyone. I assume I won't be able to mention her name here though.
Hi. I’m not in the UK but I’d still say you should get a different oncologist possibly at a different hospital. Clear cell is fairly rare so perhaps the Marsden would be best. It’s extremely important for you to get some control over this whole situation, more than just yes or no to chemo. I had an oncologist I didn’t connect with for frontline and it caused me unnecessary distress though he was an excellent surgeon. I switched after that and am so much happier having someone I feel I can talk to. It’s hard when you’re in shock in the beginning. It’s good you’ve got your sister there. Do call Anna at Ovacom for information and help.
Wow, it sounds as if you’ve had a very frightening time. You poor soul.
First to say, I had my ovarian cancer op nearly 18 years ago and I wasn’t offered chemo. My surgeon was very experienced and old fashioned and said he’d ‘got it all out’ too. Like you I had everything removed, including the omentum. He also told me and my husband that ‘ she should have 5 years, 10 if she’s lucky’. His bedside manner wasn’t the best, but his surgical skill was good (so far/fingers crossed etc). I think they have to say the 5-10 year thing because cancer survival rates are measured as 5 years. I don’t think it’s a prediction of the likely date of recurrence. There are a lot of us who have had no recurrence, however, you mainly hear from women who have had a recurrence. That’s why I stay in this group...to show there are some long term survivors. 🤞
So I’m still here, no chemo. As far as I know, I’m still well and I volunteer at the hospital I was treated at ((Southend-on-Sea) supporting women who have been diagnosed, wherever and whenever. It’s a lovely group (copescharity.co.uk) who offer all sorts of support and advice from the CNS team.
My advice is to get someone else on your side, if there’s a support group near you, that may help. The Ovacome helpline team are superb (ovacome.org.uk). They [edited by moderators] have a wealth of experience and are there to offer advice. They operate Mon to Fri, office hours, as far as I know.
If there’s anything I can do, even if it’s just a chance to let off steam, send me a message on here.
Good luck. It’s dreadful to have no faith in the system, so many Hospitals are so good at supporting women going through recovery and treatment, maybe you need to ask for a second opinion and change hospitals. I know one of our consultants at Southend works in partnership with one of the London hospitals, but I’d have to look up which one it is, I can’t remember.
I hope that, like me, your surgeon ‘got it all out’ and you go on to make a full recovery.
By the way, the offer of chemo is made nowadays as a ‘belt and braces’ treatment option, not because they think you’ll get a recurrence. It’s standard for all the women with Ov Ca at the hospital where I volunteer. It just wasn’t the way when I was diagnosed, years ago.
Hi, I too had clear cell but for ovarian - stage 1c. Had a full hysterectomy, omentum and gubbins removed, this was November 2011 - had chemo (paclitaxol and carboplatin) to mop up any rogue cells that had shed prior to surgery. I was treated at the Marsden (amazing place and people), I would certainly try and get a referral to there if you are able to. Even if just for a second opinion.
We are all clueless when it happens to us and finding our way and where to, you need people how have been through it to make it easier for you to wade through.
Thanks, everyone, for your responses so far. I will try to respond to everyone too. I have no idea how to change my consultant - I feel like I've already been blacklisted in NHS, that I have a big marker pen TROUBLE MAKER over my file even though I'm always polite. They really don't like answering questions at all.
On another point: I've already suffered some hair loss due to a side effect of another drug I was taking and found it really hard. Will the hair definitely regrow? I've heard sometimes it doesn't ... and it would be just my luck. There's the negative attitude again. Got to stop that.
It’s of course possible but be reassured that it’s very rare for your hair to not grow back after chemo. Many have in fact said their hair is better afterwards. My chemo curls are dropping now and I’m quite sad but getting used to what to do with curls was an experience! Xx
Thank you for your comment. Ovacome is here to support anyone affected by ovarian cancer. You can call the Support Line on 07503 682 311, email support@ovacome.org.uk or use the live chat facility at ovacome.org.uk.
I can see from your post that you've been diagnosed with uterine cancer, but it's not clear whether you've been diagnosed with ovarian cancer. The Eve Appeal offer information and support to people affected by gynaecological cancers, so they may be able to help with your questions about uterine cancer. They have their own forum at healthunlocked.com/ask-eve and you can contact them on 0808 802 0019 or at nurse@eveappeal.org.uk.
If there's anything that we can help with, or if you'd like to talk anything through, please get in touch with us.
Ask for a copy of the surgical pathology report. If the lymph nodes and omentum are clear, see if the path report talks about a positive surgical margin. If so you could be a candidate for brachytherapy.
I was diagnosed in Feb. 2020 with a very similar cancer and had to do tons of research because it is so rare. And chemo often is not effective, as clearly indicated in the statistics you quoted. I had brachytherapy but rejected chemo, despite the fact it was offered. I am on the Care Oncology protocol and am also working with an integrative oncologist/functional medicine specialist using the supplements on Jane McLelland’s Metro Map.
So far I am feeling well and no recurrence although I was told recurrence is more likely than not.
Chemo often doesn’t work on clear cell carcinoma (yours) or on serous carcinoma (mine). My diagnosis is uterine carcinosarcoma with endometrial and high grade serous carcinoma. The sarcoma component is mostly chondrosarcoma. This is a 1 in 500,000 cancer, but I’m strong and smart and I intend to be a long term survivor.
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diagnosed HGSOC stage 3A2
Chemo delayed again as I’m 0.7 neutrapenic
No chemo today due to low platelets......feeling worried for next week
Clear cell stage 2 ovarian - should my mum have chemo? 
Anyone recently finished chemo/radiotherapy?
