When Christa D’Souza’s uterine breast cancer scan showed telltale signs of the disease last year, she couldn’t help but worry that her own health choices were partly to blame.
‘The doctor warns that pelvic radiation is not a walk in the park’
Only afterwards do I see the warning signs. A light ‘heavy’ feeling in my lower abdomen. Kind of like it was just before a period. But I’m sure it’s nothing. And on top of that I had a uterine scan in 2018 and it was fine. It is nothing. Take it easy. Stop focusing on me all the time.
But then there’s the bleeding. Only very light bleeding, true (chemical bleeding is a normal side effect of combined oestrogen/progesterone HRT). However, in the past six months, it has become more frequent. I often look at the stain in my underpants and think, ‘Wait? What’s that doing there? Again?’
In the back of my mind I can feel the late Professor Studd’s finger wagging at me. The professor supervised my HRT after I had breast cancer in 2007 – and advised me to take progesterone for ten days a month. But I’ve let it go down to seven days, sometimes even less, because I don’t like the fact that it can make me feel bloated and dizzy. I know I have to take it because it counteracts the build-up of estrogen (which can thicken the lining of the womb and in some cases lead to endometrial cancer); I know it’s a non-negotiable choice for those, like me, who still have a womb. But I think it all balances out as I’m taking a little less estrogen than prescribed.
But to rule everything out before I go on vacation, I call the GP for a uterine scan. It’s been almost three years because of Covid – and at 61 I have to have them every year. The nice Italian man doing the ultrasound tilts his screen towards me so I can see what he sees. “But everything’s all right, isn’t it?” I say, leaning as best I can with my feet in the stirrups. A flicker of a grimace as he points at the screen. “Look,” he says, pointing to a bulge: My uterine lining is thicker than it expected given my age and history. I repeat my question. “But everything’s all right, isn’t it?”
A tiny bullet lodges itself in my brain. It can’t be… right?
“I don’t know,” he says cautiously. “It can’t be anything, but you need to do some more testing to rule out certain possibilities.” A tiny bullet lodges itself in my brain. It can’t be… right?
Immediately after, I go to Harley Street with my results in a brown envelope. The doctor has such a sympathetic way of sleeping that I burst into tears as soon as I sit down. damn. So I didn’t want to do that.
He reviews the results and then puts his fingertips on his desk and cheerfully says he wants me to have something called a hysteroscopy, which involves inserting a small camera through the cervix into my uterus to do a biopsy. of any abnormal looking growths.
I hold the nurse’s hand all the time; it’s not fun at all, on the painful side of awkward, but everyone is so likeable and nice. Hopefully this is the end then. The doctor, who is alarmingly handsome and almost young enough to be my son, says it’s fine to go ahead with the vacation we’ve planned, as the results won’t be in for ten days.
There we go to Greece. The beach house is small and I don’t want my oldest son who is with us to hear me so I crawl into a bedroom when the doctor’s secretary calls a day earlier than she said she would and asks if I can now go on Zoom with him.
The results of the hysteroscopy are in and it almost certainly looks like endometrial cancer. I sit down with a towel wrapped around my bathing suit to absorb this last bit of information. I’m in a daze and only half listening to what he’s saying.
Endometrial cancer is more common in postmenopausal women; the greatest risk factors relate to the amount and duration of exposure to estrogen over a woman’s lifetime. The next step is an MRI to see what type of tumor it is, followed by a laparoscopic hysterectomy to remove not only my uterus, but also my ovaries, fallopian tubes, and cervix. Oh. Still in that glass of incomprehension, I ask him if I should come back from vacation earlier. Oh no, he says almost laughing, it won’t make any difference – the best thing you can do is forget this and enjoy the rest of your holiday.
I want to pass all this on to my partner right away, I want a bear-like hug from him, but he’s out on the deck with my son and his girlfriend, and it’s going to look weird if I pull him away.
The MRI, which I have the day I return from Greece, reveals that it is only stage 1 and has not spread. We got it on time. No treatment needed, just the hysterectomy. The world is tipping back to normal. How lucky am I? I have no emotional ties to my reproductive organs. They have done their job. As I’m driven to the operating room, I feel a sense of euphoria: By the time I wake up, I can put this whole thing behind me.
But the pathological results of my hysterectomy reveal that it’s not quite what we thought. Cancer cells appear to have migrated to cervix and come ‘within 15mm of serosal surface’ [of the uterus], so my tumor has changed from grade I to II. It’s gone and there’s no evidence of ‘lymph or vascular’ invasion, but there’s no way to know for sure if I’m completely clear. For this reason, the doctor strongly recommends further treatment. The fat lady has yet to sing.
That evening, while brushing my teeth, I look at the blue-and-white Estradiol HRT pump dispenser that sits innocently next to the basin and toss it in the trash. Was this my fault? Something that would have been completely preventable if I had taken more progesterone? Did I play Russian roulette by taking HRT in the first place (with my cancer background)? Why, why, why didn’t I have a prophylactic hysterectomy? [to remove the ovaries and fallopian tubes]that Professor Studd told me that American women routinely undergo follow-up treatment for breast cancer?
But my doctor thinks there’s a chance it’s been there for a while and maybe it’s something genetic rather than my fault for not taking enough progesterone. At the same time, I am not your average endometrial cancer patient. I am not overweight. I have not taken tamoxifen, the drug commonly prescribed for estrogen positive breast cancer (yes, a link has been shown). And I’m ‘only’ 61. You can call me unlucky. It’s definitely starting to feel that way.
My oncologist assures me that having chemo would not increase my chances of survival or prevent it from coming back. We saw it early, I’m fit and healthy and of all the cancers out there, endometrium is probably one of the “best.” However, he warns me that pelvic radiation may not be quite the walk in the park for breast cancer. To start with, the course lasts five weeks. The irradiated area is slightly larger. And for a third you must have a full bladder during the treatment. As for the side effects – diarrhea, constipation, indigestion, pain, fatigue, cystitis, ‘sunburnt’ vagina, discharge – they shouldn’t show up until the third or fourth week, and if they do, we’ll be fine.” . I can, as it were, just keep going.
But they all fade into the background due to the crippling nausea that hits me so violently after just one session that I think it must be a stomach flu. On my second day of treatment, it’s so bad that I can’t be treated because I keep rushing to the bathroom to throw up. A week later, drinking enough water to fill my bladder without wanting to chew becomes the most important mission of my life.
Three weeks in, more than half a stone down, the disease is still there with a vengeance and the diarrhea is biblical. You know that old person who is constantly afraid of getting “caught”? I am now.
Guilt, shame, reflection, consideration for others, fear of looking like a madman – nausea like this wipes out EVERYTHING. I spend at least five hours a day on the couch watching Selling Sunset and Below Deck. I can’t handle anything more incriminating.
For the last two sessions I have brachytherapy which is a form of internal radiation therapy as opposed to the external radiation therapy (EBRT) I’ve had so far. Also used for cervical and prostate cancers, brachytherapy involves inserting something into the vagina similar to a large Tampax or vibrator to more accurately deliver the radiation to the target area. It takes even less time than EBRT and isn’t painful, but the shame of it all – with your feet in the stirrups in front of the nurses’ viewing platform with this thing up can’t help you-know-what, but a little feel…kinky.
And then it’s over. Within two weeks the disease is gone and my appetite is back with a vengeance. I’m my normal self again. As for missing the effects of HRT, to be honest I don’t feel any different from how I felt when I was on it. Some women are prescribed progesterone after endometrial cancer, but my oncologist doesn’t recommend it. Of course I can no longer take estrogen. Estrogen is my enemy. But what will life be without, I wonder?
As I write this I can’t detect a noticeable difference, but that could very well change. Is it only a matter of time before the hot flashes, the insomnia, the sense of doom and so on return? And I’m one of the lucky ones. What about you who feel, literally, suicidal without your HRT?
Back to the prophylactic hysterectomy. Shouldn’t our doctors more forcefully recommend that we have them? There is no conclusive evidence that it was a lack of progesterone that caused my cancer – that I would have gotten it whether I had taken HRT or not – but if I had the time I almost certainly would have had one. And maybe I wouldn’t even have taken HRT in the first place.
If there’s one take-home message I can offer, it’s this one. If your menopausal symptoms are mild, don’t feel socially compelled to use HRT. And if you do take it, take it exactly as your doctor prescribes – don’t be an idiot and ‘wing it’ like me. Most importantly, insist on an annual uterine scan. And if you are bleeding, whether you are taking HRT or not, you should, should, tell your doctor. Immediately. You don’t make a fuss. You take care of yourself.
Do it, will you, for me?
- Menopause: The True Story by Christa D’Souza, published by Short Books Ltd, £9.99. To order a copy for £8.49 until June 13th go to mailshop.co.uk/books or call 020 3176 2937. Free shipping and delivery on orders over £20
- For more information on gynecological cancers visit eveappeal.org.uk