This post will be yet another with all sorts of different references to things that most people won’t want to read about. But if you’re interested in the things I’m learning for the whole cervical cancer journey, read on. The very last paragraph is about my dream last night…very strange, there were dinosaurs!!!!! The whole thing is really long and quite rambling – I’m sorry, but my brain isn’t clearing it up enough still to be able to make it more sensible. Skip to the funny bit at the end 😀
Firstly to the recovery from the cone biopsy and exploration. The exploration was the most surprising, Dr Tan had said that he’d look into all the nooks and crannys and see whether this had spread at all. Turns out the medical terms for the things he did include EUA, Hysteroscopy, D&C, Cytoscopy, Sigmoidoscopy and of course the cone biopsy. I guess these are all the technical terms that the lady in the theater sprouted at me when I got in there. Google tells me that these ‘scopy’s are cameras in the uterus, rectum, and bladder. No wonder everything felt wrong all through there. All that oddness and discomfort is now gone. Its taken three weeks but I’m back into walking and also the gentle squats and pushups etc. I have discovered that the lower abdomen work last weekend had slightly adverse effects (signs of slight bleeding about 3 hours after, one instance). Last night I did the set without the lower abs and I’ve had nothing, so I’ll drop that for a little while. Oh, and walking seems to be okay. Last night I had to cook some lunches, but tonight I have no excuses so I should go for a walk before dinner.
So in summary, recovery from cony biopsy and wanton exploration takes longer to recover from than LLETZ, but the things to expect are about the same.
Reading the pathology report is more illuminating than asking Dr Tan (he said, and I paraphrase, quite a lot was removed but he’d see how it recovers, though he didn’t bother with that). From the pathology I have learnt that he took a cone biopsy measuring 25mm from 3-9 o’clock and 30mm from 12-6 o’clock and a suture went in at 12 o’clock where the LLETZ was done. That seems like a decent amount of a cervix. He also took curettings measuring 10 x 6 x 2 mm, it says its from the lower uterine segment, no wonder they wanted me to pee before I left. The results say that the transformation zone is entirely contained within the material removed. That there is “no evidence of residual in situ or invasive malignancy”.
Now to the next steps. So I guess I told you last time that the standard response is hysterectomy. I’ve done some research and now talked to a number of gynaeoncologists and everything says the same thing. If you have stage 1A1 SCC cervical cancer you can wait to have the hysterectomy, but you should definitely have it. So I’m pushing ahead with it now, of course there is the argument that I’ll change my mind and decide to want children, but there are many other ways to have kids. The stress of the increased chances of recurrence versus the maybe chance of changing my mind…I’ll take the less prolonged stress option thank you. On the topic of recurrence, Dr Tan also said that the HPV vaccine can reduce recurrence, so I had the first of three Gardasil shots last week.
After all the interesting things happening through Dr Tans office I am not comfortable continuing this journey with him. I’m sure you’ll find a rant about that further on in this post. I’d also much prefer to have the hysterectomy in Melbourne so I can have mum there and less impact to her life, and to be close to Ben and the olds…have my support network there really. So I requested a reference for a doctor in Melbourne. Dr Tan suggested Dr Tom Manolisas and Dr Simon Hyde. I called Dr Manolitsas on Monday and he’s on leave until October 26th, his rooms suggested Dr Kym Reid. I also called Dr Simon Hyde and he was awaiting my referral. Oh yeah that story (watch out, rant ahead): When I asked Dr Tan about the referral when he called about the results he said he’d have them for me when he saw me 2 October. He didn’t have it ready, Dr Paige wrote it up while we talked and waited for his highness’s two mintutes, it was written by the time I left there, Dr Tan just had to sign it. His reception said it would likely be Monday. On Tuesday when I called Dr Hyde again, they didn’t have it so I called Dr Tans rooms and he electronically approved the letter and the thing got sent. Finally. He doesn’t do much that he says he will and what he does do he doesn’t tell you about. (Rant over).
I got a call back from Dr Hydes room yesterday. He had told his staff that he’d not do the hysterectomy within six weeks of the cone biopsy. WHAT?!?!?!?!?! Dr Tan had said he can do it immediately, he’d said the process was cone biopsy, results 2 October, then hysterectomy can be done as soon as he can schedule it. (More ranting) Not only were the results available and provided 21 Sept, but he’d also not considered timing for the hysterectomy. I called his rooms and asked what his opinion was of the six weeks. He called back this morning and said that you can do hysterectomy within two weeks of cone biopsy or not until six weeks after, something about swelling after two weeks and usually gone by six. WTF?????? He hadn’t even scheduled the follow up for within two weeks of the cone biopsy. What the hell is this guy playing at? He said he’d not do it this week (week three), he said by now he’d wait until the six week mark. I don’t think this guy gets it at all. (rant done…for now)
Okay, so Dr Manolitsas and his leave means that I contacted Dr Reid, her reviews are great and shes similarly involved in the right sorts of programs and associations and is on the Victorian tumor board. Dr Reids rooms returned my call yesterday and asked my history. I sent them a brief summary and the referral that Dr Hyde got. I got an email back from Dr Reid herself asking when I’d be in Melbourne and as long as recovery is going well she’d do it whenever she can schedule it, likely within two weeks. She said she’ll call when she’s done with surgery today, so from my experience with the timeliness of surgeons I’m expecting tomorrow. I hope I’m pleasantly surprised.
In my frantic ‘what is gong on here’ of yesterday I also called Dr Wu. He called me back within an hour. I talked to him about the whole thing, it was wonderful to talk to someone who kinda gets it and at least knows how to talk to people. So I asked him what he thought about the waiting, he says he doesn’t know of a reason to wait six weeks. I then asked about the effects of hysterectomy, he said that being between the bladder and bowel the area (including vagina and sex) will feel different but shouldn’t feel unpleasant or bad, I’ll get used to the different. I also noted that I’ve been on the pill constantly for 14 years, he said that going off it will only make me feel better. He said that menopause is likely to set in a year early. I’m not sure how they could measure that, but hell if they can then so be it, one year isn’t much! And finally, there is an increased risk of vaginal prolapse, things like obesity and heavy lifting are risk factors but gentle strengthening should mean that I’ll be okay. Dr Wu is great.
I feel I want to rant about Dr Tan, so here goes. I’m sure he’s great at what he does. It seems like his research is quite good and all, but I just…I can’t credit him with being great. Unless its a great ass. The inconsistencies and things that don’t align well in my head are surprising. There is the timing of the hysterectomy, thats a huge saying-one-thing-and-doing-another. The referrals was another inaction on his part, twice. He’d also said he’d have a USB with all my details and pathology for me on Friday – it only got prepared yesterday when I got grumpy about the referrals, I hope it is in the post now. The other saying-not-doing was the call on the Friday after surgery, he didn’t call on Friday and only called Monday because I called the rooms in a tither. I understand the results weren’t available until the Monday, but his rooms could have called to let me know that was what was happening. The simple fact that results were available that soon was news as he’d said I’d get them 2 October. Heck, he also talked of an examination at the appointment 2 October – its my fault I forgot to follow up, but that didn’t happen either. I’m also not sure how many surgeries happen where the patient doesn’t see the surgeon at all on the day, and then he doesn’t call when he says…that felt all very odd to me. He said a couple of times not to worry because I am with them and in good hands. Honestly, I didn’t feel at any stage like I was in good hands. I realise I highly value integrity, possibly more than others, but surely its at least simple courtesy. His general manner was all very dismissive, we’ll deal with that after the cancer and we’ll see when we have the follow up. I guess this is a resounding ‘I do not recommend Dr Tan’, I hope others have a better experience.
This is an update slightly after the rest of this post. I was done and had planned to re-read after lunch then send out. But I have an addition! Dr Hyde just called me, he himself, no secretaries etc. Nice guy, talks quite fast but easy to talk to. He said that with a similarly aged patient he’d be very comfortable monitoring then hysterectomy later because once the uterus is gone there is no replacing it. Without having the pathology on hand, he’d be confident that the cancer is now gone and that he’d monitor it for the next few years before doing the hysterectomy. The timing is more of a concern for him because he hasn’t met me even though I explained my ‘I’ve had as many kids as I ever planned to have’. Fair enough I guess. He described that the preference to wait is based on the recovery of the cervix and the amount of inflammation and scarring. If they cannot get access to the uterus through the cervix then they will need to revert to a conventional surgery. He always prepares his patients based on open as anything can crop up during surgery and they may need to open up. I can understand and accept that risk (and wonder why Dr Tan never brought such a thing up). He also asked about my weight ‘I know its odd, but can I ask how big you are?’ Sure thing, I’m not obese though BMI says overweight at 76kg and 167cm, thanks to lifting. He did understand that the ongoing follow up would be difficult in the States with the pre-existing condition status and that I’d want the reduced worry of having it done now. So we decided that he’d get ‘the girls’ to review and see when the next available surgery time is then schedule the meeting in the morning with the surgery in the afternoon. Sweet! Of course that could be a couple of weeks away. So now I have two surgeons looking at the timing and waiting on the calls. I guess I just have to wait and see what they both say.
UPDATED: late yesterday Dr Reid called and asked all about my treatment to date, my frame of mind, and recovery then said it sounds like I’m fit healthy and recovering well so she’d be willing to see me on the 16th and take a slight risk and have a theatre booked for the 17th. Of October. Next week. She said that the 4.5 weeks slightly increases the chance of having to change from laparoscopic to standard hysterectomy but this is always a possibility and waiting may or may not affect it. So her reception will call today and we’ll get everything sorted. She’s planning the Epworth in Box Hill but if they don’t have room, maybe the Epworth Freemasons in the city. This time next week I’ll be in Melbourne. It’s really nice to have some timing so my brain can plan, I always feel better with a plan.
Finally for today’s post – some levity. I had a dream last night. I was in a garden, one that is on a slope with a water feature, creek down to a pond, and a rock wall on one side. I was there with Pa, he was working down the bottom of the garden. I walked up the path next to the wall and a snake like head popped out and I was oddly not scared but called for Pa. Somewhere in there I decided the snake was actually a lizard and it was in my hands. Then continued walking and a head popped out of the pavers, they were broken bricks being pushed aside. The head was that of a triceratops as if it was trying to crack through the ground like it was the egg shell. I dropped the lizard and Pa picked it up and discovered it was a dinosaur also, the long necked tree eating kind. Then I woke up and it came to me that they were the two dinosaurs from the Land Before Time. So that was an interesting dream to have, especially as I rarely remember dreams. I don’t even recall watching the show terribly much, where in blazes did the Land Before Time come from in my imaginings? There aren’t even dinosaurs in my books lately! Funny brains…