Has the COVID-19 pandemic impacted your ovarian... - My Ovacome
It delayed my surgery because I had to wait until an intensive care bed was available and because of a backlog of cases due to staffing issues.
My treatment continue throughout the pandemic , it was moved to a 'green' hospital , I had phone consultations with my oncologist, scans and blood tests as normal .
Yes, due to covid my general operation to remove ovary cyst was cancelled and then I have found out it grew into cancer . I still think if it was taken out on time I would not even have had a cancer.
Phone consults and 2 face to face , a referral and face to face with a Haematologist , Had bone marrow biopsy.
Yes, I suspect the drugs and surgery have all happened as they should of. However the impact of attending appointments, having surgery and remote appointments had a huge impact and continues to. I do believe in remote appointments as being good for pts and the NHS in many cases but they are occasions where you really do need face to face to establish a relationship with your Dr or because the discussion will be complex or difficult.
In addition the sense of isolation as a cancer pt is increased. You are physically distanced from each other and sometimes curtained apart too. I noticed chemo chairs were reduced and separated so it was impossible to chat to a fellow pt etc. I suspect there may be implications not yet fully realised from a journey with cancer through a pandemic. For example have pts psychologically adjusted to their diagnosis and prognosis as the same rate as PRE Covid?
To a degree I had telephone conversation with my consultant. And wasn't allowed a visitor in hospital when I had my surgery.I was diagnosed in November and didn't start chemo until January.
I had chemotherapy through the second lockdown. I requested telephone consultations which I got but the oncologist insisted I have a face to face consultation every 3 months .I have to say I had very good care throughout Covid .
I had a recurrence just as covid started ,got all my chemo in cancer center, reviews phone call instead of face to face ,but all went well
Yes due to covid -19 it took six months of going back and forth to my doctor on the phone who kept telling me i had thrush .It took me to demand a blood test that is when we found out i had stage 3c serious ovarian cancer . i think if id been able to see my doctor face to face and had an examination they would have caught it sooner i am very lucky to be here .
Ah I thought I had thrush and though I was seen I wasn’t seen enough and was fobbed off on the phone by a junior gp in the end and gave up…. And I didn’t know about the blood test. Not heard many others mention the thrush
Doc wouldn’t see me and told me over phone I didn’t need to go to hospital. I asked if they would send me to hospital as had considered a and e. Anyway when they did do the blood test eventually and I got referred I needed urgent op and nhs couldn’t do it for six to eight weeks so paid privately and then too much else in there so still waiting for surgery nhs but having chemo. Got letter apologising for the delay. Been v disappointed with nhs tbh
the fact I couldn't see the Gp delayed .but I paid for a private scan .then I got fast tracked as private CA125 was 379 also . but thank goodness I did .as once referred to hospital. things moved faster.
The treatment I received from the hospital was great. Hard having no visitors for 10 days after my operation and chemo was a lonely experience but can’t fault how quickly I was treated. GP another story altogether. Not seen or supported for 2 years.
My appointments were cancelled and my CT scans not on time so my treatment started later than I would have liked.
Throughout the period 2020-present day it has been a shame that none of the family members who wished to come and support me at my appointments were allowed to do so. The staff at the chemotherapy unit however have been great support.
I was diagnosed during the Pandemic I live in the states it didn't affect my treatment at all
I only began my treatment in May 2021 so have no previous experience. My treatment from all agencies, so far, has been exemplary.
Yes, still is, things like my partner not being able to wait with me for appointments (though was allowed then into the appointments), no hospital visits allowed during my debulking surgery, nursing staff under more pressure, trying to talk through masks and understand what people were saying through them (at appointments, eg oncologists and nurse blood taking/chemo giving ) and potentially delayed my treatment as my Wellwoman health appointment from work/provate health was cancelled, so potentially an opportunity missed to spot earlier.
During the pandemic my check ups continued to be face to face every 6 months, but recently I was informed that I would now be seen annually with appointments alternating between a gynae oncology surgeon in the general woman’s health clinic and an oncologist in the cancer centre where I have been cared for during the past 6 years. This means there will be no continuity of care whatsoever, which I find an unsettling prospect.
I’m still having telephone appointments as oncology reviews with my cns nurse or oncology team registrar rather than face to face appointments.
The quimio treatment began on Nov 19 and was completed without any problem in May 20. Hospital was very diferenr the last months but I was bien attended very well
My Oncologist has worked all the way through and has seen patients face to face. He even does Saturday extra clinics. He quite rightly deserves praise and we are thankful for him.
I had chemo cancelled twice because of Covid. Once when my son had it and once when I had it. Being in hospital when diagnosed and not allowed visitors. Attending appointments alone, including chemo.
I had a recurrence to an inguinal node right at the beginning of the Pandemic. I had to wait 6 months before my radiation treatments because they could not schedule a CT scan. Hospitals were full. I did finally get 25 days of radiation and it’s been 2 years. No signs of any new recurrence.
My very first ultrasound was delayed by 3 months because they said they were only doing urgent cases, by then I was stage 3c.
Had chemo x 5 prior to surgery as waiting list for surgery was very long due to Covid
Was discharged post debulking surgery a week earlier than originally told. (On the day the government ordered 90'000 beds to be made available. The day before this a small part of my wound was infected. Result 6 months of district nurses visiting initially 3 times a day. Wound from belly button to pelvis opened. I will never know would that have happened anyway but at least I would have been in hospital testing for infection. District nurses left it for 2 weeks before swabbing wound.Never had face to face with Consultant surgeon to ask many questions I had. Had a phone call to discharge me back to my oncology team which on reflection I really could have done with. Needed follow up chemo which once the wound had healed took place without delay. My hospital stopped patients having contrast drink prior to ct scan and still have not reinstated this. As I had deposits on my bowel it did feel as though there may have had to be a degree of guess work with subsequent ct scans. Was originally told it was so theoatients weren't in the waiting room to ling. Then told it was because they had nowhere to sanitise the jugs etc. Just made me feel they weren't get all the data they needed from a ct scan without it.
I believe it impacted on how quickly my cancer was diagnosed. I Called my GP surgery in April 2021,regarding a strange mole / growth on my arm, and instead of being offered an appointment i was asked to send a photo, and advised it was a mole elderly people get .The growth disappeared 2 weeks later, which was odd. Now i am clear if seen i would have also drawn attention to another strange fungal mark on my navel.I was only diagnosed in early September 2021 when a GP did offer me a face to face appointment and referred me on..Once seen and treated by the Hospital I had amazing care,despite covid.
I don't think my treatment has been impacted but the delivery of it. For example I was alone when I was told my bowel was blocked and that if chemo didn't work I had a relatively short prognosis. I was allowed only an hour visit per day whilst in hospital for 3 weeks.
I think I would have had more chemo a year earlier when I had the recurrence at the beginning of the pandemic. My Oncologist was worried about the risk of catching Covid.
Had to miss two treatments of caelyx after my reoccurrence
I had my 2nd surgery by Professor Fotopoulou in February 2020 after recovering I was on my way to my local hospital to start chemotherapy when I had a phone call telling me to turn around and go home, this was devastating as I had been told to start more chemotherapy asap, I then had to wait until June to start on the course.
my debulking surgery was cancelled indefinitely in January 2021 because my local health authority made a decision to withhold surgery from patients who would need intensive care. i was diagnosed stage IV ovarian cancer in August 2020 and believe that I would have died in 2021 without surgery. Fortunately a friend paid for private surgery and I am still here!
There is shortage of dye for Cat Scan. Because of that I only can do a Cat scan without contrast and I'm worry that it will be not as accurate as with contrast.
I came down with Covid on May 7 th. My Dr. told me to stop taking niraparib for three weeks. I went and had antibody infusions for three days to build up my immune system. I felt good and my blood work was ok to start niraparib up again. These infusions work the best within the first 5 days of coming down with the virus. My husband has cancer, but his Covid symptoms were mild and he didn’t have the infusions. Donna
My treatment (surgery) was completed before Covid and my follow up appointments have all been face to face with my Consultant at regular 3 month initially and now 6 monthly intervals.
Luckily, I have remained stable throughout the pandemic. I’ve had 4 weekly phone consultations, 4 weekly blood tests, and 3 monthly CT without fail!
Not seeing a doctor delayed my diagnosis of recurrence. Ended up in hospital where I have had excellent care and treatment for past two years.
My treatment was not knowingly impacted but I realise I was lucky.
Indoors due to cancer and chemo
Mum was almost turned away from her surgery hospital as our local hospital lab never bothered to forward on her pcr result.
Face to face appointments were changed to telephone appointment and now every other appointment is face to face. Trying to contact csn is not easy, you have to leave an answerphone message. Sometimes you get a reply after a few days, sometimes no answer at all.
Hi everyone
Thank you all so much for your responses to our poll and for sharing your thoughts with us.
Your feedback will help inform the work we do and help shape our clinical education programmes.
We wanted to let you know that Ovacome is giving an upcoming presentation on patient experience and the impact of the Covid-19 pandemic to healthcare professionals working in the field of oncology. If there is anything you would like to see addressed, if you have suggestions for improvements, or if you have any positive feedback or ‘top tips’ that you would like us to raise, please do let us know. You can continue to comment on this thread, message us directly through this forum, send us an email via support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm. No identifying information (including forum names) will be used in the presentation.
We really appreciate your insight and perspectives.
Best wishes
The Ovacome Team
Having surgery at the height of covid made me feel very isolated, not being able to have visitors in hospital or someone with me at appointments. All follow up appointments have been by phone and I think an occasional f2f would be reassuring.
My relative was diagnosed at stage 2, surgery delay led to it becoming 3c.
I had ca125 done result 18 so nothing was done, lost over 2stone, and all other symptoms of OC.since discovered my CA125 dosnt work for me. 4 mths later presented in hospital with a blood clot in each lung and diagnosed with OC grade3c. From then on things moved fast, commenced chemo x 4 (op delayed due to no high dependency beds) Operation done by keyhole.e surgery but unfortunately caught covid and ended up in hospital 17dys. Commenced chemo 1wk after discharge x 2.The care I've had from my medical team has been exceptionally good, during treatment and after too. I have a nurse I can contact any time, and have also been to hospital to see consultant when I have requested it.
I had a blood test for OC eventually, as they were treating me at the Drs for IBS and a prolapsed bladder, during the beginning of Covid. It wasn’t, it was a tumour growing on my ovary. I was due an emergency scan, but this got cancelled twice because of Covid, it seemed to take forever to get my treatment off the ground, when it did, it flew and chemo was successful. Stage 3 OC In remission, although now super worried and anxious again because I now have to have a colonoscopy, for some minor bowel problems. This has also been delayed as the backlog of Covid is trying to catch up. I can’t get an appointment for a consultation even for at least 4-5 weeks, this is very worrying and I’m now having an appointment with a private Dr on Tuesday to see if he can get things moving at a quicker pace. I don’t want to wait. However, I can Ill afford this, but everyone keeps telling me that my health comes first. Anxiety is the worst thing, once you get that cancer diagnosis, nothing is ever the same again. Trying to stay positive, but it’s a tricky one!
Hi Ettenomis
Thank you for your reply to our poll and for sharing your experiences with us. I’m so sorry to hear how worried and anxious you are. We are here to support you so please don’t hesitate to get in touch if you would like to talk things through. You can call our support line on 0800 008 7054, email us via support@ovacome.org.uk or send us message directly through this forum. We’re here Monday – Friday, 10am – 5pm, to respond to questions, provide information resources or just have a friendly chat.
I hope your appointment on Tuesday is helpful, that your colonoscopy appointment is organised soon and you’re able to access some advice regarding the bowel problems you’ve been experiencing.
Best wishes
Annie – Ovacome support
Dear all
Thank you for continuing to share your experiences with us. Your feedback informs the work we do and helps shape our clinical education programmes. If you would like to learn more about these, please visit: ovacome.org.uk/patient-expe... .
If there is anything you would like to talk through with a member of our support team, please do get in touch with us. You can message us directly through this forum, send us an email via support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm.
We really appreciate your insight and perspectives on this issue.
Best wishes
The Ovacome Team
It may be a perceived rather thzn actual impact but while Oncology staff are wonderful ,as are Mc Millan staff it seems often as if they are short staffed and overwhelmed at times ,do you feel guilty chasing them up .You're more likely to wait for your review ,which can be way off.
