My consultant called this week and said they’d found no further signs of cancer in the histology following my hysterectomy and bilateral whatsit six weeks ago.
I just wanted to give a quick overview of my experience for anyone who is going though similar, and most of all to say thank you to Macmillan champion Jane and all you generous, compassionate women who took the time to give me support and advice and to share your own experience.
I went to the GP on 11 December with a post-menopausal bleed and was put on the two-week urgent pathway. I wasn’t too worried as this was the third time I’d had a bleed in four years. The first time I’d had a vaginal scan and a hysteroscopy (under sedation) which confirmed lots of fibroids. I’d been diagnosed with these 20 years before and had had two fibroid embolisation treatments to shrink them, four years apart, as I hadn’t wanted a hysterectomy. The second bleed came after I’d missed three weeks of my progesterone tablets after a national shortage and a holiday, and the gynaecologist agreed that was probably the cause. A scan showed too many fibroids to see the lining properly but she didn’t think there was cause for concern.
So on 4 Jan this year I had a hysteroscopy that identified a large polyp and I was told I’d need a second hysteroscopy to remove it. I didn’t hear from the hospital (Liverpool Women’s) for weeks and a nurse friend told me to chase them. Eventually I was given a second date of 19 March.
On 14 April a CNS rang me to say they’d found cancer in the polyp and I would need an MRI to establish the grade and stage. She said this would be in a week or two followed by a meeting with a consultant in another week or two. In the end the MRI date wasn’t until three and a bit weeks later. This brought me really close to the start date of a long-planned Disneyworld holiday I didn’t want to cancel. The same nurse said I shouldn’t go as it was a full-on holiday and also that there was an increased risk of blood clots on the flight.
Thanks to the extremely helpful advice on this forum I didn’t cancel the trip. The MRI results came back four days before we flew but not in time to be discussed at the MDT meeting the day after. The nurse told me the cancer was a predicted grade 1, stage 1.
I spoke to our travel insurers. I got my GP to do a full blood count including a clotting test (ironically this was the one test that was inconclusive as the nurse didn’t take enough blood for the sample) and spent the 9-hour flight walking the aisles in my compression socks, stretching and drinking water by the gallon. We had a fantastic family holiday where I barely thought about having cancer.
While we were away I got a text to say my appointment with the consultant would be eleven days after our return, June 11. At this he told me I’d need an abdominal hysterectomy because of the large size of my fibroids, but after he examined me revised this to say he would attempt keyhole with one larger vertical incision to get the womb and ovaries out. This is what he did, so I have four tiny scars and a three-inch vertical scar from my belly button.
My op date came through as 10 July, so seven and a half months after I was put on the urgent pathway. I was in hospital for one night though offered a second night if I wanted (I didn’t). I had very little pain when I got home and started short walks with my husband and the dog the next day. I was amazed at how quickly I recovered, especially compared to an abdominal gallbladder removal in my late 30s. I did get tired if I did a lot, and a couple of times needed a nap in the afternoon. I had many interesting novels to read but ended up watching all six series of Downton Abbey instead. My husband drove us to a family wedding a seven-hour drive away by week four and a week after that I drove to Stratford-upon-Avon for a couple of days.
I’m glad I didn’t need further treatment but am aware cancer might come back, so am treasuring time with my loved ones and trying to make the most of each day.
Fantastic news! So pleased for you! Are you having any more in person check ups or going onto patient-led follow up?
My consultant called this week and said they’d found no further signs of cancer in the histology following my hysterectomy and bilateral whatsit six weeks ago.
Wonderful news.
H
I’m not sure yet. A CNS is due to ring me this week so I’ll find out then. I’d be happier with in person check ips.
They may try to send you down the road of patient-led follow up. And some women are happy with that. But I specifically said I’d prefer in person and they said if I wasn’t confident enough to go patient-led then I could have in person appointments. It wasn’t that I wasn’t confident, but I didn’t say that lol. I just wanted the reassurance of having an examination and chat, rather than having to monitor myself and then phone in. My last in person one was in July and my next one is July next year - I will then be 4.5 years post op. This cancer of ours doesn’t recur at all for many women, but IF it is going to recur, is statistically most likely within the first 3 years, so I wanted in person for the first 3 years at least, and they have done that for me.
Hi Eva
That's great news that you don't need any more treatment.
There is a variation between hospitals as to what happens next. Some ladies are offered face to face appointments for check ups and some go on to patient led follow up.
The link below has info about what to be aware of for signs of recurrence.
If there is anything else you need please do get in touch.
Jane
Thank you, I will try to secure in-person check ups. I’d feel much happier being seen and examined as other than a bleed I wouldn’t really know what I was looking for.
Thank you Jane, your blog is really clear and helpful. What you said about feeling flat, tired and emotional after getting the thumbs up from the nurses resonated with me as that’s how I’ve felt since the initial relief.
I’m also keeping up lifestyle changes in the hope it doesn’t come back.
JFYI, at my appointments, a small speculum and a torch is used to have a look at my vaginal cuff. She also then has a through feel around inside, and also presses externally on the area where my lymph nodes would be.
My CNS said that most recurrences tend to be picked up by symptoms. I personally felt reassured to be checked physically each time. it was also good emotionally to see the same CNS and gave me an opportunity to address the side effects from the radiotherapy and chemotherapy. She also said the chances of recurrence lessen with each month that passes.
I recommend the HOPE course. It helps deal with the emotions we all naturally feel after going through the cancer journey. Its free and all online so you can dip in and out and go at your own pace. There is no pressure to engage but it helped me.
Online HOPE programme for your patients | Macmillan Cancer Support
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