Oncologists have a difficult job. Diagnosing terrible diseases, having to share bad news sometimes, having to deal with patients who are probably not so happy chappy, sometimes having to deal with 'the end'.
I know an oncologist as a personal friend in another country and I remember him saying that the work affected him emotionally, and therefore, he had resorted to the lab work.
Yesterday I found a forgotten memory of how this cancer journey actually started.
In May this year we came back from our first trip to Europe, it was a whirl wind tour with a 18 hour flight to Turkey, 10 days later we were in France, 7 days later in Scotland, 3 days later in England, and then on to the US for 2 weeks.
When I returned home, I began to menstruate, and after a week, it didn't stop. It continued almost continously through to the end of June, so I attended my GP's office to ask for a check up in direct relation to the bleeding. I was sent to have an ultrasound and it came back with the diagnosis that I had PCOS, a fact I already knew. This was a new GP for me, following 4 years of being jerked around by my previous GP.
She put the bleeding down to PCOS' affect on hormones, a hormone imbalance and asked me to come back when it stopped so that my lining could be checked. She also wrote me a referral to a fertility specialist at my husband and my request. We'd been to an IVF seminar the year before
The bleeding continued and at times it would get lighter, and then start being like a normal menstruation again. During May and June the bleeding was heavy, with large clots forming but it seemed to have eased.
One night in September I was watching a home renovation show, Grand Designs. It was about a couple who were in the middle of a 2 year home build project building this extraordinary dream home around an historic tower that was part of their childhood, of which the land was bought. Part way through the project and show the wife learned that cancer had returned to her, and she passed away before the project ended, the husband continued his legacy to build and finish the house. It was an emotional episode but I didn't think anything further of it.
The next morning, I woke up early, so I lay in bed. It was my day off work and everything was quiet. And then suddenly out of nowhere, I had a clear thought in my mind, cancer.
I remember that my heart started beating a bit, I started to feel anxious. I reached over to my iPhone and looked up cancer/menstruation and I found an article on Cervical cancer. Then I found another and another.
It was too early to call the doctor, but my anxiety dictated that I should go and see her, to have an overdue pap smear and remind her of my bleeding. The funny thing is, the bleeding had lightened, almost stopped the day before, so it made me even more comfortable that today should be the day I have a pap smear.
My doctor sent me off for another ultrasound after the pap smear. I was able to schedule the ultrasound the following afternoon. So I drank my litre of water and headed off to the imaging centre, for some reason that day I just kept driving over speed bumps and it was difficult to find parking. As any girl who has had an ultrasound will know, holding a litre of water is no easy task.
Sitting in the radiology room, the radiologist asked me some questions, a hard woman with a cold edge. She asked me the reason for my ultrasound, and i told her I'd been trying to conceive for 4 years, she asked me if I'd seen a fertility specialist and when I said no, that I'd been trying but my previous doctor had been difficult, she was concerned, and almost angry. She told me that after 12 months of trying, I should have gotten a referral.
She did a couple of other scans, an internal as well, and said I needed to make sure I came back after my next period so they could analyse the uterine lining.
I said OK, and I left.
The GP follow up was fairly simple. My pap smear came back normal and the ultrasound showed I had a thickened lining of about 13mm. At the height of the cycle, just before menstruation, the lining is as thick as 11-12mm so mine was considered on the thicker side.
She asked me to come back after my period stopped so an ultrasound could be done to see how thick my lining was after the blood had shed, and also reminded me that she had written a referral to the fertility specialist and that I should follow that up.
I went back home and contacted IVF Australia, and that's how we ended up where we are now.
My first oncologist appointment was this past Monday. I'd had the whole weekend to think about my fears so when the appointment came along, I felt ready.
The oncologist, Dr GG, had already spoken to my fertility specialist extensively and was already aware of my situation. He explained the cancer to me and went through my medical history. He explained that I was very unlucky as I was still young, not menopausal, I didn't have cancer in the family history and I'd been on the pill for more than 15 years to regular my PCOS. The Pill had protected me from the cancer for those years.
The treatment for me is based around our wish to have a child, although I understand the most popular treatment is to have a total hysterectomy.
The treatment plan covers 6 months with close observation as I will be taking hormone therapy, large doses of progestogen (Provera) to reduce the cancer. The dosage I've started on is 100mg for this week, increased to 200mg per day next week and then 300mg each day after that. The normal dosage of Provera that people take for general menstrual issues is 5-10mg. But since this is a cancer treatment, a high dosage is required.
After the 3rd month I will have another D&C to biopsy the uterine lining, and then afterward and IUD will take over half the dosage of Provera, and I'll continue on less pills for the remaining 3 months.
If the treatment works to contain the cancer, then we will go straight to IVF, and after we've tried to have children, the end game will be to remove the uterus to ensure the cancer doesn't come back.
Provera is said to have many side effects, bloating from fluid retention, weight gain, nausea amongst others. Apparently it triggers moodiness.
This week on the 100mg per day, I haven't had many side effects. The first morning after the first dosage I had a very painful toe on my left side when I woke up. It had developed as I slept and it became difficult to walk. But in the afternoon I took a walk around the block with my dog and that actually seemed to help.
I've found that I only eat half of what I used to, and I am still experiencing lower back pain with some pain or discomfort in the lower abdomen. Other than that, I feel normal.
Next week I am scheduled to have an MRI and CT to stage the cancer then my next oncologist appointment will be Monday the 25th of November.
We've decided to fly to the US for thanksgiving to see family as we are now going to be in Australia for at least 8 months. Our flight out is on the 26th of November, so if the MRI and CT come back adversely I may need to come back early although the oncologist did not anticipate any dire diagnosis.
We had been planning to move to the US with my husbands transfer through his company but with this diagnosis... it is delayed.
So far, the doctors I have encountered, and the nurses, have all been so kind and straightforward, it really makes the GP level of medicine look mediocre.
I've tried to find information on Provera and it's success online but scant information has been recorded. So I am hoping that this blog will be a record of my journey so that other women will be informed of what to expect.
The main thing is, think positive! Don't be a victim to the diagnosis, make the most of it and remember to be grateful for those that surround you.
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