Newly diagnosed stage 3: Hi, My name is Sharon. I... - My Ovacome

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Newly diagnosed stage 3

ShazD profile image
43 Replies

Hi,

My name is Sharon. I turned 50 in June.I have recently been diagnosed with stage 3 high grade serous ovarian cancer. I have had a radical hysterectomy and am about to start my 2nd cycle of chemo. I am still very angry about my diagnosis as I am a clinical nurse specialist who has been presenting with symptoms since Feb 2017. So here goes my rant....I had an abnormal ultrasound (bilateral endometriomas)in the nhs in June and was referred to one of the top gynaecologists who failed to physically examine me. He ordered an MRI which came back clear so I told him it was wrong as it failed to even pick up my endometriosis let alone the endometriomas . He then said he would check the MRI with another ultrasound despite me questioning why it would not be checked with a more specific imaging mode as a ct scan. He said if the ultrasound came back clear I was not to come back and he would be reassured that nothing was wrong.the ultrasound came back clear and he wrote to my GP expressing concern at the scan done in the nhs and told me this news was very reassuring. He also told my GP that either way I would not require any active treatment. So that was us both told by a leading gynaecologist. My question is ...if that was a leading gynaecologist who demonstrated, in my opinion as a clinical nurse specialist, a total lack of acceptable standards of practice by failing to carry out a thorough clinical assessment of a patient presenting with several symptoms suggestive of ovarian cancer( urinary urgency,abdominal bloating and discomfort, collapse from abdominal pain coming from right ovary up into diaphragm where tumour has now been found and is unresectable, history of endometriosis and resulting infertility, father died at 60 from prostate cancer, mother died age 47 of non Hodgkin's lymphoma) then we are in a very sorry place with regards to detecting this disease. I have been told by my oncologist that because the disease is so hard to detect that we will never know if my cancer had been there during the scan in June. I refuse to believe this and if patients present with symptoms they should be checked and have the risk of malignancy indices calculated ( as per NICE guidelines for detecting ovarian cancer). If Drs and especially gynae specialists fail to carry out these basic physical assessments and tests they then cannot prove the cancer was not there and should be answerable to their governing body for unacceptable practice by omission to complete an assessment. I will quite happily go into medical schools and speak about my story as unless something is done to educate the medical profession on the consequences (of their failure to complete thorough clinical assessments and be able to arrive at a differential diagnosis and then order the appropriate tests to enable them to provide a more accurate diagnosis) more of us will be misdiagnosed or simply left undetected until it is too late.

I have been told to stay positive and to be strong and channel all my energy into my treatment and recovery but I as a nurse feel this is such an important issue. I cannot believe leading gynae specialists can be letting this happen to their patients. I find this unacceptable and shocking in this day and age.

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ShazD
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MH500 profile image
MH500

Hi Shaz

Like you I am also a CNS. I am also stage 3c high grade, currently 7 months into first line remission and back at work.

I understand every word you have written and also feel the same anger. Things have to change, the current approach just isn’t good enough and is letting thousands of women down. I’d join your crusade! It’s very hard as a healthcare professional to not want to stand up and shout from the rafters.

The other thing I do agree with though is that right at this moment you need to think about yourself (something us nurses are not good at). Focus on your treatment, surgery, and healing and keep stress and anger to a minimum. It’s all about you for now. Good diet, exercise, relaxation.....it will all help. Make sure you get a radical surgeon to carry out the debulking.

When you are through the jungle and into a clearing then think about how to make a difference.

Here if you need a chat, take care

Marian xx

Maxjor profile image
Maxjor

Sharon--TOTALLY agree and how upsetting, frustrating and wrong it all was. I am sorry as you knew you had symptoms long before. You can probably help the system by a) making sure your gynae specialists know what happened if they don't (in writing), make sure you find (or already have) a team you trust --they hear you, you are part of your treatment plan, etc. and I would even ask if there are any actions being taken to make sure this does not happen to others (there must be guidelines on that too). In terms of addressing it while in treatment, that is up to you---do you feel it is something that would drain you? Keep you from healing? Keep you from focusing on you when you need to? If not, and if this mission makes you feel you are doing something now/positive/helpful then I don't see why you can't make it a part of your journey. If you think it would upset you, cause extra angst, I would hold off till you are done with treatment and recovery from treatment (if you still want to at that point). As many on this site say, being your own advocate when you can will help make sure no leaves go unturned but that again will depend on your team "hearing you" and reacting to it.

Getting rid of the anger over this will also help you so think of what you can handle doing (even if just seeing a therapist or other ways) till you feel you are ready or again, want to, tackle this. I am so sorry you had to go through that.

When I was told something I disagreed with (and was right to disagree) I confronted my oncologist (I knew I was relapsing, my ca125 knew I was relapsing but my nurse kept telling me the trial I was on would not allow a scan and I wanted the scan and said I am coming off the trial --my right at any time) and it took my surgeon to override them-- and would not let it go till my onc explained why the nurse did it, how I can be assured it would not happen again, and he had spoken with her, etc. I felt much better and I know what to do if anything like that were to happen again.

Hoping your treatment is tolerable and would love to hear how this all goes if you plan on speaking or confronting, etc. Good luck. oxoxo

MH500 profile image
MH500

Sorry I’ve just reread and seen that you’ve already had surgery. With regard the diaphragm being unresectable ..... get a 2nd opinion...... pm me for suggestions

SarahsJourney profile image
SarahsJourney

Hi Sharon,

I had been under a Harley Street Gynacologist for 6 months after presenting with urinary issues. Had an ultrasound in June which I was told was clear. Continued to spot intermittently and have pelvic discomfort. I was told it was because I was peri-menopausal.

In August I saw him again. Had a physical exam and also complained of discomfort during intercourse. Again I was told my age and being peri menopausal could cause vaginal dryness but if symptoms persisted I could have an MRI.

By September I was suffering from shoulder and chest pain which eventually led to me being diagnosed with pleural effusion and 1.5ltrs drained and analysed after presenting at A&E. Further cat scans also confirmed I was Stage 4 High grade serous.

This is the short version of the run up to my diagnosis but I don’t know what else I personally could have done. It’s incredibly frustrating and I go over and over it sometimes but I can’t change my diagnosis.

Like you if I could do something to alert others so that it’s diagnosed sooner and not too late for them I would 😞 xxx

jools53 profile image
jools53 in reply to SarahsJourney

Hi how you doing at mo? And what are you being treated with? Me 3c advance serous😬 on avastin! Xx

ShazD profile image
ShazD in reply to jools53

I am on avastin every 3 weeks until Dec now. My last pet ct scan showed no measureable disease. I am good but I am also making a lot of lifestyle changes. My oncologist rolls his eyes at me with all my research and questions! I am on a whole food diet so no processed food or sugars. I have not eaten red meat or chicken for years but ate a lot of dairy and also ate fish so I have cut out dairy and limiting my fish intake. I am trying to eat organic wherever possible and also detoxing my house with all the chemical cleaning products. I think there is definitely something in the way we now live and the increasing rates of cancer. I am off all my painkillers and didn’t even take any for my knee when skiing recently( I used to take regular painkillers when skiing before my oc) so the diet is definitely doing something.I am doing everything I can to change my lifestyle to limit a recurrence and figure the avastin will cover me until I have been able to make some dramatic lifestyle changes to stop me feeding any cancer cells. I starved prior to my chemo which helped so much with the after effects of the chemo. The dietician and oncologist had me on a high protein full fat diet and I was so ill until I started looking into dietary changes. I was always fit and active so a regular exercise regime is easy to get back into for me and I am back at the gym doing an hour and a quarter workout each week and aerobics once a week. Starting back at weekly yoga as well now that scar tissue is settling. I am positive about the future as I think a positive outlook is key to help the healing process. I am hopefully going back to work as a tissue viability clinical nurse specialist in April . I am determined to have a slower pace of life and adjust my work life balance. I am not about to start crocheting sandals out of tofu but have definitely changed the way I look at the world since being diagnosed.

I am reading your post and I am shocked and horrified at the way you have been treated, it seems highly qualified professionals also need educating on the signs and symptoms of Ovarian Cancer, By all means go ahead and tell your experiences to medical students and both senior and junior consultants, They cant keep blaming gps forever can they

Hi Sharon.

Sadly I think the vast majority of ladies here were misdiagnosed. My GP missed it and a Gynae specialist diagnosed me with a uterus infection without a physical examination. It took a locum to sit down and go through the symptoms stage by stage with me at the end of my tether sobbing in the surgery.

He did a blood test for CA125.

Like you I’m cross but more saddened and worried that GPs have little training on ovarian cancer.

I’ve taken up two lots of posters and leaflets to my surgery but they still haven’t put up the poster.

I don’t have a lot of faith in my CNS or oncologist. Very little support during or after treatment.

It’s not just ovarian cancer that is misdiagnosed. Sadly my father died in May due to misdiagnosed lung cancer.

He died 7 weeks after being told he had cancer. This was after 2 years of repeated visits to Doctors. Two chest X-rays and hospital visits. Even told a week before diagnosis that it was depression.

I have no idea how you can change this.

I’ve tried talking to the GPs at mine and my father’s surgery. They close ranks and refer you to Ombudsman.

I know you can’t name hospitals or staff here but I wouldn’t recommend Oxfordshire or Berkshire.

I would love to hear what other ladies feel they can do to help improve GP training and how to raise awareness. Because even in 2017 awareness is very poor.

I do think, like others have suggested, that you try and focus on your recovery for now. That’s the most important.

There will be time to confront this issue again. I know there are plenty of ladies here that would be willing to discuss and help.

Wishing you lots of healing. Sarah x

ShazD profile image
ShazD

Hi. Thank you for all your comments. It is sad to hear similar stories but only makes me more determined to try and do something to change the situation. Yes I need to focus on getting through my treatment and putting my energy into getting better and I will. I spoke to my counsellor and she feels that me investigating the sequence of events leading up to my diagnosis may be a good way to work through things for me.

I also think that it is important to try and make something good out of something bad so if my situation can bring about a positive change or prevent others going through the same thing then that will give me some inner peace.

Lily-Anne profile image
Lily-Anne

Welcome to the party 🥂

I was turned away by the GP for nine months with ‘indigestion’ / borderline hypochondriac. New GP surgery sent for a u/s and referral under two week rule. If only I’d been taken seriously

I think your story is very typical of the lack of recognition of this disease.

LA

Tesla_7US profile image
Tesla_7US

ShazD, Shocking, yes. Disgusting and misogynistic, yes. I believe that mens' symptoms get closer scrutiny in the quest for a root cause. I am in US and had a very similar experience to yours. Had symptoms, went to 4-5 different docs. TV ultrasound picked up nothing, Urologist, Gastroenterologist, GP and EVEN the ONCOLOGIST who treated me after having breast cancer either did NOTHING or found nothing because they were only looking at the INSIDE of my organs!!! None of these people even ordered a CAT scan. So, please, make NOISE, COMPLAIN, do whatever it takes to raise awareness within the medical community and with the public. If any ONE of my docs had been paying attention they would have ordered a CA125 test, which none of these providers even asked for. So, with your position as a nurse you have credibility. Please do whatever it takes to help save the lives of other women in the future.

eileen_alberti profile image
eileen_alberti in reply to Tesla_7US

Me too. It took changing primary doctors 3 times in 2 years to get my diagnosis. So stage 4 and a crap onc to boot. Yes, I'm more than mad, and as a senior woman [in the US] I was looked upon as a chronic complainer and hypochondriac. I believe I should have been diagnosed 1 1/2 years earlier. So I fired the onc and got a great one. He listened and acted. he found the blocked ureter. I will not be quiet anymore. I tell every woman I meet to be aware. I attended a seminar that didn't tell the women anything they needed to know accept book info. How do you put that info together with your symptoms? I told them. The doctor thanked me for my input. I feel less angry as I get the info out there. So shout from the rooftops. Breast cancer gets all the press. Wonder why? Ovarian, go in the corner and shut up. Not me. But I will have the best possible life thru all this.

wish I could send you a picture of the Christmas tree my 2 friends and I made out of hurricane cuttings of trees and some power tools. Yes, they are still not picked up in many places. Making lemonade? No, lemon meringue pie.

Thanks for being here , I need you. I've learned so much from all of you. And for letting me vent. Amen.

Blessings Eileen

Tesla_7US profile image
Tesla_7US in reply to eileen_alberti

Eileen, I completely understand and agree with you. I even tell healthcare workers I meet during treatment about this stealthy disease so that AWARENESS can be raised to promote early detection. I'll tell anyone standing still about this disease! Every time I launch into my "elevator speech" (short summary of OVCA symptoms) they are completely UNAWARE! The problem is "Women's Work" has gone unrespected because no dollar value is strongly attached to it. If this disease were examined from an economic viewpoint and the cost of "lost productivity" greater attention would be paid. The treatment for a mother, wife, sister or daughter can financially devastate an entire family. This is a cold hearted way to look at this disease, but "lost dollars" is what it takes for a "system" to recognize we need early detection with improved treatment options. So, make noise, raise awareness and leverage your (our) personal suffering for the greater good of our daughters, family, friends and fellow humans.

Di16 profile image
Di16

Fortunately gynaecologists do occasionally listen. I went back to my surgeon with a recurrence a few years ago. He spent quite a while trying to convince me unsuccessfully that all was ok. Eventually he said that as he could not convince me, he would arrange a ct scan. If it showed anything, he would send me an appointment for his next clinic. If it was clear, he would just send me a letter to say so. I received the expected appointment & an apology. I feel he let me down this year though. I had had another recurrence for some time, being treated with chemo & hormone therapy. My onc felt that as nothing was having any effect any more, & it looked as though surgery could be possible, he was recommending a referral back to the surgeons. The surgeon rang me at home after their mdt meeting to tell me the answer was no. No chance of an appointment to discuss the matter. The onc wrote him a letter to tell him how upset I was, & referred me to a surgeon at another hospital, who performed radical surgery. Di

Tesla_7US profile image
Tesla_7US in reply to Di16

DI16, No woman should have to go to such lengths simply to be HEARD! I have not experienced the men in my life having to make repeated attempts, calls, appeals or appointments asking for help and being told they are fine! This paradigm is so ingrained in the American Culture as to have become invisible!

ntapia26 profile image
ntapia26

Im so sorry this happend to you. My mom had a mass the size of a cantaloupe and was given iron pills and told to "wait" for menapause (she was 51) about 8months later the bleeding was going through to furniture and she looked for a second gyno oppinion since her first one didnt do anything. 8 montha later they finally do a biopsy and oct 2016 she is staged 3c endometrial.

Thannah profile image
Thannah

ShazD I am so sorry you are going through this....and I agree....your experience is definitely important to share! If you don't mind me asking, how were you eventually diagnosed? I am going through this same scenario right now and I am loosing steam, but your story is giving me the push I need to keep going. Thank you in advance and keep strong!

ShazD profile image
ShazD in reply to Thannah

I am even more angry this morning. I complained to my oncologist about the sequence of events leading to my diagnosis. He then sent me a copy of the letter following my consultation. This letter was also going to my GP. It did not mention any of my concerns regarding the gynaecologist nor the fact I did not wish to be under the gynaecologists care or have any further correspondence sent to him about me. I wrote back stating the letter needed to be rewritten to accurately reflect the content of the consultation with specific regard to my concerns about the lack of care received unde the gynaecologist.

I have asked for my medical records only to find the gynaecologist wrote one entry that my abdomen was distended post op and that I had no guarding. He stood at the end of the bed and did not come any where near me as per my diary entry so could never have assessed any guarding.That is a false medical entry.

He also wrote that I felt they were hiding something and that every time I complained of something the Drs were missing the underlying cause. Then 2 days later he enters in the notes...'having discussion again... Discussed with husband re psychological help'..... Absolutely disgusting....

Thannah profile image
Thannah in reply to ShazD

That is truly disgusting. I get so infuriated when Drs fob off women's symptoms as psychological and needing medicines for depression. I am so sorry that you have to go through this fight along with your cancer battle.

ShazD profile image
ShazD in reply to Thannah

Then it gets worse. I have received in the last half hour copies of my gastro records from when I collapsed in Feb with abdominal pain. An ultrasound was clear. They told me there was some scarring on the liver but all was reassuring. I now have the ultrasound report where the ultrasonographer recommended the abdominal scan be repeated in 3 months to ensure stability. This was never relayed to me and the gastro wrote an entry saying he thought it was nothing and did not need to see me again.

eileen_alberti profile image
eileen_alberti in reply to Thannah

sorry this reply is so late, I don't know how to navigate this system. I was diagnosed by a CT with contrast. A PET scan will also do it. A CA125 blood test will help.

CallmeMum profile image
CallmeMum

Hi lovely and welcome to the family

Everyone on here can sympathise with your situation my special person was telling her arse of a GP for 5 years something isn’t right my mum died of OC my auntie and cousin had OC and BC she was told IBS and a doctor had written on her record very anxious person so nobody was paying attention to what she was telling them eventually a locum referred her she was diagnosed with stage 3c told to celebrate her birthday early as she had 6 months with chemo left of her life were nearly 3 years past diagnosis recently finished 3rd line treatment and is now on Niraparib she’ll never be in remission again and it will only be dormant but we’re hoping that this is for a very long time! Xxx

ShazD profile image
ShazD in reply to CallmeMum

Thanks for the welcome. It is really awful that we all have to go through this! Can't believe it. I thought everyone would say I was unlucky but it seems it is the norm so more reason to fight for change.

Angie2020 profile image
Angie2020 in reply to CallmeMum

I have all the symptoms of Oc but 2 doctors have passed me off and say I have ibs! I still have 3 weeks out of 10 to wait to see a gynaecologist. I have constant low level bleeding for over 6 months and then every 5 to 8 weeks a proper bleed. They've told me I have 3 small cysts which are millimeters and an endometrial thickening and it shouldn't be causing me any problems! I want to scream at them because there passing me off as an hypochondriac. I had a couple of pains which made me nearly pass out. They shot down the front of my thigh and down the back of my hip.I'm no doctor but ibs doesn't make you want to pass out does it!

CallmeMum profile image
CallmeMum in reply to Angie2020

No IBS doesn’t make you want to pass out! Have they done a CA125? if so what were the results? Maybe go back and see if they can push the appointment forward? Also don’t leave without a CT scan xxx

Angie2020 profile image
Angie2020 in reply to CallmeMum

Yeah it was 7 but a ca125 doesn't pick all cancers up does it. Because of my age (51) and symptoms I've tried to push the appointment but I've got nowhere. I've suffered exhaustion and fatigue and weight loss since January 2017 but they're not listening to me. My only option would be to go private

CallmeMum profile image
CallmeMum in reply to Angie2020

In all likeliness they’ve ruled out OC due to your CA125 ask for a CT scan if they say it’s not necessary then you can always respond with you know someone who has exactly the same symptoms as you and she was told IBS for years she now has terminal cancer and is on her 3rd reoccurrence say her CA125 was extremely low but she ticked every other box so I’m not being funny but im not leaving here without a CT scan. If they respond with you can have an ultrasound tell them it didn’t pick up her cancer! Xxx

chrissapam profile image
chrissapam

Hi I had a wrong diagnosis following a scan too and am campaigning for more laparoscopies in cases where there is any doubt...you are the expert, do you think this would have led to the correct diagnosis? Where are you based? Really sorry for your situation but may be together we can help others....Chris xxx

ShazD profile image
ShazD in reply to chrissapam

Yes potentially. I did read on the nice guidelines something re laparoscopies. I will check that. I think with me it was a lack of assessment in the first instance which did not allow the risk of malignancy to be calculated. So basic physical assessment, no ca 125 and no ct to recheck the MRI. I did ask re laparoscope and was told that would only be done if the ultrasound showed something.

I am based in London and would be interested in doing anything to help.

antheamary profile image
antheamary

Hi there, just want to back you up & ask if your first gynae ordered a ca125. I am a retired nurse & i didnt even know there was such a blood test. That's how they eventually diagnosed mine. I had 5 litres drainedfrom ascites. I kept saying why was i loosing weight from my legs etc but my tummy was getting bigger? I was advised to take up cycling.

You will need all your strength to fight this dreadful disease. 4 years on i am stillhere.

Allthe best Anthea

ShazD profile image
ShazD in reply to antheamary

No ca 125 done which is why I am angry as someone of his standing did not carry out basic tests to rule out the risk of cancer.

chrissapam profile image
chrissapam

my ultrasound did show something but they just said another one in 3 months. Did not even refer to a gynae. Was told it probably would have been considered by a court to be negligent but would not have made any difference to outcome!! My gp's' practice made mistakes too.

Was not gong to take it further till somebody I met on this site I think died because 'they' in my opinion, were too laid back. Am trying to find out at present where the responsibility actually lies. I asked for a second opinion at the Marsden but did not actually address this issue with them. As others have said one has to balance any campaigning with caring for one's own health. Do hope you are looking after yours and that your treatment goes well.

P.M. me if you would like to. love Chris xxx

ShazD profile image
ShazD in reply to chrissapam

If there are clear guidelines for detecting gynaecological cancer/ ruling out the risk and these basic recommendations are not followed the dr or consultant surely should be accountable for their omissions. Omission to do something is considered neglect.

chrissapam profile image
chrissapam in reply to ShazD

yep, I think the problem is with the guide lines....senior radiologists did a report for GP ordered ultrasound scan but said repeat in three months...despite the fact 'LUMP' had grown,they assumed it was a fibroid

I believe should have referred themselves to gynae but gynae surgeon said initially they only would have monitored by Ca 125 even if that had happened.

3/4 weeks later was diagnosed by a/e. when I attended with severe ascites.

As I said...a case could have almost certainly be made for neglect but argument was it would not have made a difference to outcome!!!

ShazD profile image
ShazD in reply to chrissapam

It sounds like this happens too often. I am shocked. The more people do not complain the more they get away with poor practice. I am very angry to hear all these stories. My oncologist is dancing around me at the moment as he is petrified of me now he has realised I will not be messed with. He is very good but realises I am on a mission with regards to the events leading to my diagnosis and knows I am right as he could not argue with me when I questioned aspects of my care.

I am looking after myself. Work have been supportive and I have 6 months off whilst having my chemo so I am spending time with family who are flying over from NZ. I am catching up on all the television I have not had time to watch and reading loads. Hoping to also get back into all my sewing projects.

chrissapam profile image
chrissapam

agree with you; they all think I am being very reasonable at present which I actually am as I fully believe....having been receiving treatment for two plus years that most of the problem is with the government..first reorganising in order to incorporate the private sector and secondly refusing to finance an already cost efficient in some areas and potentially excellent service better.

Will not give up though....I have a bit of a history of getting things sorted eventually although it gets more difficult...as am sure you can imagine, when one is not sure how long one is going to live!!!!

Was really pleased to read you were going to access the protocols about laparoscopies...that is exactly what we need. Have my issue/complaint with/ PALS still open...and I am awaiting a response from an extremely nice but young and clearly not unstressed gynae. surgeon. The one who did my op. has retired. When I saw him initially I was worried (in best maternal fashion) he was going to have a heart attack(!) but he has lost weight and seems to have got a lot fitter since!

Like you, having worked in a hospital in the past, I can see the other side of it.

Maybe we can get together after Christmas and discuss. I do come to London relatively frequently and it would be fantastic if we could get some results. Pleased you have been able to see your family from N.Z. and enjoy your sewing...you are right of course that people need to complain ...but if I can, I prefer sysem change to the pillorying of individuals and as I'm sure you know that is often more difficult.

There is an American person on this site who was interested at the time of the last General Election...I'll try to contact her again.

Take care, and thanks for posting, love Chris xxx

Lilo83 profile image
Lilo83

My mum was diagnosed with stage 4 ovarian cancer after 3 months of being told she had stomach problems. She was even sent for a camera to be put into her stomach (I forget it’s medical term) but when she arrived for the procedure she was so bloated and unwell by then her stomach has actually collapsed! All her symptoms pointed to ovarian cancer but opportunity after opportunity was missed. By the time of her diagnosis the family has already diagnosed her ourselves by googling her symptoms. It made us all so angry. And all we could do was write a letter of complaint. We never even heard back.

ShazD profile image
ShazD in reply to Lilo83

What?.!,, how long ago was this. If you wrote a letter of complaint they have to respond within 7 days telling you what they are going to do.Then they have 28 days to investigate the complaint before informing you of the details of their investigation. If the investigation is going to take longer than 28 days they have to write to you before the 28 days are up and inform you of the delay. You need to inform them that you did not receive a reply and ask for it to be investigated. I would also ask for release of her medical records as well.

Barlow1951 profile image
Barlow1951

I am really sad to hear of people’s appalling treatment especially when it comes to diagnosis, but thankfully this has not been everyone’s experience on this forum. There are GPs and oncologists who do respond appropriately to their patients and I was one of those fortunate enough to be fast tracked. However, despite having a tumour the size of a large grapefruit on diagnosis, I had no symptoms apart from unintentional weight loss and fatigue. I can therefore appreciate why OC is so difficult to diagnose and why most of us are stage 3 or 4 when it is found. I agree that we all need to tell our individual stories to medical and nursing personnel whenever we have the chance, so that the current disappointing situation can be improved sooner than later.

Best wishes to everyone,

Barbara

Lollie2016 profile image
Lollie2016

I am really sorry to hear about your diagnosis and the treatment you endured. I am really disappointed to hear yet another story about failure to carry out proper testing with accuracy.

I spent 9 months trying to find out what was wrong with me - i saw 7 different doctors and not one of them helped me to get to a diagnosis. Infact it was down to my own persistence that i was eventually paid a private consultant ordered the correct scan and the tumour was found.

If the first doctor had just taken the time to order a scan , i would have been diagnosed 9 months earlier.

I have so much anger about that situation. I even queued for 5 hours in horrendous pain in an a&e department just to be told that because i allowed the consultant to touch my pelvic area, i had failed the test - i was told there is nothing wrong with me and was sent home. Even though i could that something was catastrophically wrong because of the pain running through my pelvis. The consultant sent me home. That was at UCH hospital in London.

I wish there was a body that would help us and take on board his feedback but i feel I cannot put more energy into it now for my own well being .

I understand your frustration...

Focus on yourself and your health now and i hope you'll find strength to write a complaint to the hospital.

Take care xxxx

Ellakos profile image
Ellakos

Thank you I recently put up a post asking for advice as I know my body e postmenopausal 5 yrs. ..aged 50 now...bloating..constant need to urinate...loss of appetite...forcing myself to eat...constipatione nausea. .niggling pain cervical area....itching esp back ...also bleeding heavily but sporadically. ..e got smear done came back clear...they dismissing me now...exhausted...I don't feel right...thank you your post it is a sad indIcement, e very poor treat mentioned by top oncologist as well! Hope and pray u are OK and given treatment u deserve..all best in ur treatments and recovery..disgraceful way u fobbed off...Ellakos

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear Sharon

I am so sorry to hear about all you have been through. if there is anything we can do to help please do get in touch either through messaging me on this forum or calling 0800 008 7054. I'm here Monday-Friday 10am-5pm.

You mention being keen to educate medical students through your story. We run a Survivors Teaching Students programme which you can read about on our website here: ovacome.org.uk/campaigning-...

If you would be interested in volunteering as part of Survivors Teaching Students please do get in touch with Ruth Grigg, Volunteer and Patient Information Manager, on 020 7299 6653 or email r.grigg@ovacome.co.uk.

Best wishes

Anna

Support Service Manager

ShazD profile image
ShazD in reply to OvacomeSupport

Thanks. I would definitely be interested in talking to medical students and campaigning for better awareness of ovarian cancer. I am currently going through my chemo (just finished second cycle) and it is a bit tough going so may be when it is complete I will volunteer.

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