Hi, I'm new to this forum, but I have been in the cancer alternative universe since February. I'm in Canberra and I had surgery and radiation. They are giving me a break from treatment for a couple of months until they work out if the radiation has worked or not.
My cancer was in my uterus and I have had all my lady parts removed. I've been searching for a local support group - it can be for something simple as an occassional cup of coffee. Alas, all the local groups seem to be for specific cancer types and any female-related cancer seems only focused on breast cancer (not having a go at those lovely ladies with breast cancer; they need all the support they can get; but women get gender-specific cancer in other parts too. We should not be invisible in cancer support or discussions). There also isn't a general cancer support group in this region.
Are there any other people in the ACT who would like to get together occasionally and help create a Girly Bits Cancer Support Coffee Club? (Breast cancer patients/survivors are welcome, but we will also talk about the area "down below". Men without a support group are also welcome too, but be prepared to hear about lady parts).
Hey hey - unrelated comment .. the references to "girly bits" and "lady parts" are really kinda charming
That to one side - it's nice to connect with people in your EXACT situation (lady part cancer) and certainly the relatability of someone who had also had a hysterectomy or similar procedure, and wrapping your head around the changes (physiological, social, psychological) .. I'm sure it would be extra helpful to have someone who's shared the same situation.
BUT .. if you hit a wall, and still feel that you need and aren't getting some kind of support .. let's say it's a friendly ear …. I'd suggest widen your criteria a bit. Most folks who have been through cancer, in my opinion, have had their outlook changed, and adapt to some pretty common sorts of issues. I think that in many cases it broadens a person's perspective, and deepens their empathy.
Even if it's not lady-part specific, I think you could find a friendly ear, and someone who understands the generalities, if not exactly how it feels.
Best of luck !
Hi, I’ve joined this page only minutes ago after being in the dr’s 5 hrs ago. Do you mind me asking how it all came about for you? I’m post menopause (I went through an early one at 41yrs old, I’m now 49) I had tests on Tuesday & today was told I need surgery. The uterus lining is thicker than it should be but there’s also a large growth on the cervix. I have a brand new private hospital just opened minutes away from me & have been referred there. I must’ve missed them this afternoon so I’m expecting a call back tomorrow, I hope! My dr advised the lump will be taken straight off & they’ll do a d&c of the uterus, depending on the cell count (????) will determine if a scrape is enough or a hysterectomy. Oh I’m in Melbourne by the way but would be good to even have an online buddy! I’m British & moved here 7years ago with hubby & 2 kids so I don’t have my mum or aunts for support, just a few friends & work colleagues.
I don’t mind answering, but it might be a bit shocking to anyone else reading this. (Anyone who is squeamish should turn away now)
My story is a bit dramatic and a little bit unusual – most women get diagnosed after unusual bleeding, particularly post-menopausal. I hadn’t reached menopause yet, though I was starting to have very irregular bleeding, including times when it was ridiculously heavy, though I was in denial for a long time – thinking if I ignored it long enough, it would go away (very stupid of me).
On one particular day I woke up haemorrhaging and realised there was something seriously wrong, so I went into the emergency department at the nearest hospital. By the time I arrived, I had lost so much blood, my heart couldn’t cope and I needed to be resuscitated. Fortunately I had made it to the hospital before I reached the crisis point – if you are going to have an emergency, the best place to be is sitting on a bed in the ED with a nurse standing next to you. The rest of that day is a bit of a blur, but I needed a blood transfusion & I was rushed into surgery for investigation & a biopsy; before spending the next couple of days in ICU.
A few days later the pathology results showed it was a grade 2 carcinoma and they referred me to a gynaecologist. It took a week to see him and he took one look at the pathology report and referred me to a gynaecological oncologist. It took three weeks to get an appointment with the oncologist and I had the surgery two weeks after that. Fortunately I haven’t needed chemo, but I did have 25 radiation sessions. There is still a question on whether my lymph nodes were affected or not, so I’m going to need close monitoring for a few years.
It is scary when you are still waiting to find out what’s happening, but even if it is the worst case scenario and it is cancer, most women with this type of cancer can be treated successfully. The biggest advantage is the uterus itself. It’s actually quite a strong muscle and it manages to keep most of the cancer contained, meaning surgery is often all that is needed.
The surgery itself wasn’t too bad, without too much pain. I had four nights in hospital, but many women are able to leave after a day or two – they kept me in for four nights because I live alone. If you have support at home, you probably won’t need to stay that long. I was a public patient at a public hospital, but I can't fault how well I was treated.
Hope all goes well for you. It is OK to be scared, but we have some good medical services in this country and you can get through this.
Firstly, how are you and how are you feeling? Did you end up finding a support group close to home?
Your post jumped out at me as I am scheduled for a D&C this coming Friday. Very similar symptoms to yours, irregular bleeding, extremely heavy some months, one in particular I lost a lot of blood (although doesn’t sound as much as yours).
After an ultrasound in my gyno’s office he found a mass on the wall of my uterus causing a bulge into my uterus.
Do you mind if I ask whether you presented with an abnormally thickened lining? I am also pre-menopause and i am just curious as my lining has presented quite normal. Apparently that’s a good sign.
thank you for reading 🙂
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