What the psychologist said.... Subtitle: Possible pitfalls when getting a 2nd opinion

I went to see a psychologist yesterday. I ended up seeing the same one I saw when my dad died and I found myself saying the same thing I am sure I said then: "He is a sage". I like him.
He said some interesting things. Essentially he seems to agree with The Lymph Lady that I am not healing from the hysterectomy because I am holding onto the anger. He said I am like a baby whose bottle has been taken away and who keeps crying for it.
He also said because my identity is wound up (he used different words, not "identity") with doing research and then making informed decisions, I cannot believe I made an error **, that I am not invincible.
He also said the doctor seems arrogant and he is surprised the doctor did not say to me: "We are taking an extreme approach...". I don't think the doctor believed that.
On Monday The Sage is going to hypnotise me, and can you believe it, I cannot remember why. I am both excited and a little apprehensive.
I just wish I felt ok. As I am writing this, am feeling horrible pains. And last night I was laughing and happy and then my stomach blew up like a balloon and then I panicked, went online to determine more about "diagnostic and preventative hysterectomies" and then got anxious that I will never get better, never get to be how I was before.
I am scheduled to go back to work on Monday. I am seeing The Sage at lunchtime. On Tuesday night I plan to go to the theatre. Will decide on Monday evening if I am well enough.
One brightness - but also slight trepidation - on the horizon is that I am going away tomorrow, for two nights. To a five-star hotel in Umhlanga, Durban area.....
When the doctor and I were still on good terms, ie prior op, he suggested I go away to recuperate. I checked this again with him post-op, while in hospital. It is a one-hour flight. I don't have to leave the hotel except to go for walks on the beachfront right outside, or to have a meal/drinks at the other five-star hotel next door which, I was laughing at the psychologist about yesterday, now seems a possible better option than the one I have chosen - all part of my new insecurity, vulnerability, feeling crushed, whatever you wanna call it....
Should be fun though. Just hope I will be ok at least 90% of every day.

PS: Just remembered. The Sage said the doctor left me no choice, saying I was playing with fire.


**My error:
My main error in this whole process was the 2nd opinion. The gynae had told me during one of two pre-op consultations in the week before the op (I thought I was a real smart alec) that I needed to do it within a month. Also, he would be away from the 22nd. And he couldn't do the 8th. And he operates only on Mondays (unless it is an emergency).
He said I was welcome to get a 2nd opinion. (This was after I saw the pathologist report recommended only a D&C). Did I want to get my own, or did I want him to suggest someone?
I thought: where am I going to get a 2nd opinion from a gynaecologist so quickly, who would I go to.... and so, STUPIDLY, said: "Ok, you suggest someone". When he suggested the head of the gynaecology department at a leading university, it seemed fine. And he only sees patients on Fridays, said my doctor, so would a phone consultation be ok?  I said yes.
Now, even writing this, I feel crazy. What an arsehole I was. The only thing in my favour is that when I did speak to 2nd Opinion Gynae, I let him know I was unimpressed with what he said: that I got breast cancer so young (huh?) that I could have the gene and therefore it was a good idea to take out my ovaries too. I told him that if those issues were relevant to me, they would have been brought up by The Tango Man four years ago when I had cancer. I then put down the phone and told my gynae in disgust: "He threw the textbook at me. A waste of time".
So why did I persist with the severe and harsh approach?
I know that even if I had got an independent 2nd opinion (my gynae had conferred with 2nd Opinion Gynae and given him my reports so it wasn't independent), and it was contrary to my doctor, I would have wanted a 3rd opinion. And why not? Why didn't I have the courage to say: "I am taking off work until I resolve this?"
It was the "you are playing with fire" that got to me.
As it happened, I wasn't.
Worse than that, I am in agony. I have not had a single day since my hysterectomy on March 18 that I have been fine for the entire day and night. Last night my entire stomach blew up like a balloon....think I wrote that already.....I just want to get better now....but I guess I also want to understand this.....

Definately need cushioning

Just came back from The Lymph Lady and, as she is in the medical field and incidentally also had a hysterectomy, it was so nice to speak to her. She said I am very angry and emotionally not ok - well, she put it differently, something how it is affected me emotionally. She said when she had a hysterectomy, although she got an infection which delayed healing, by 5-6 weeks she was fine. As in exactly how she had been before. She reckons my anger has delayed my healing. This has been worrying me.
The psychologist I phoned on Saturday has not yet phoned me back. Maybe she does all that sort of admin stuff in the evening.
I need to get better but I cannot be happy about this operation. It is so radical. I keep wondering now: why, when my D&C result last year came back as perfect, did he not question that something else might have been causing the irregular cells?
You see, I am going around in circles. And that doesn't lead to progress.
PS: My arm was fine. She says that is because I am not moving around.

Don't have cancer yet sicker now than when did have cancer treatment

I am fukked. Feel awful and was just commenting how when I did have cancer, I wasn't nearly as ill from the treatment as I am now, when I don't have cancer. All because of the hysterectomy.

No cancer; just a fibroid but had hysterectomy

I had the hysterectomy on Monday morning. Have not had the written report yet but my gynae had had a conversation with the pathologist who told him there was no malignancy; just a fibroid.
I feel a bit shellshocked. I was so sure I was doing the right thing. My gynae had told me: "You are playing with fire". He really thought I how cancer or pre-cancerous cells. My history of breast cancer and being on tamoxifen had pointed him and everyone else in that direction. Now he has told me: "The fibroid was causing negative cells".
On Thursday the gynae told me: "Five doctors approved of this procedure".
I exploded.
"Five doctors? Who?"
I then pointed out that the GP had agreed with him but that I would never speak to him again cos he told he I had endometrial cancer and got it all wrong. And that was approving of the op; that was agreed with the gynae when he informed him.
My oncologist spoke to me before I saw the initial pathologist report. Once I found out the report suggested a D & C only, not a hysterectomy, the oncologist did not return any of the three messages I had left him. I think he felt he had spoken to me. And I didn't have cancer; why did he need to speak to me?
The pathologist who did the initial report had told me it was drastic, he just needed more tissue but recommended I do it.
He too suspected cancer.
I believe the gynae thought he was doing the best thing.
Oh and the 2nd opinion doctor, the head of what-what at Wits University, just threw the textbook at me, suggesting two things (all indicating cancer) that had they been an issue when I was diagnosed four years ago, the oncologist would have dealt with them.
So really it was the gynae.
Now I have had it. And I wonder why.
The Yoga Man, my dear friend, says "six weeks isn't so long, you'll be fine" but I feel like someone who had a vague threat of breast cancer in the family and had a double masectomy (I know many in America do that; I don't).
I feel the drastic surgery I had was unnecessary. The night before the procedure, on Sunday night, at 10pm, I had second thoughts. Let me change it to a D &C , I thought. Let them tell me it is cancerous or pre-cancerous.... and then.
This is radical.
Anyway. I tried to post my blog from my phone but need to check that facility; it didn't work from hospital.
Will be home for about a month. Lots of time to write, I guess.

My hysterectomy is tomorrow morning

I am having a hysterectomy tomorrow morning but not so sure I am doing the right thing. I think I should have first checked to see if the cells were pre-cancerous and if they were, then do the hysterectomy.
I know I did discuss this with my gynae but really, I do feel that it is a bit drastic.
Why did he feel it was necessary? He is sooo respected and I supposed I cannot keep on having 'bad results' from the endometrial biopsies, the Z-samplers, but last time (ok, the results were a bit better than they are now), I had the D&C requested, and there was nothing wrong.
Why now a hysterectomy?

Oh well.......

Pray for me.

Going ahead with hysterectomy on Monday

After an exhausting day -  which involved much angst and questioning (interrogating really) of both my gynae and to a lesser extent the 2nd Opinion Doctor (whom I really didn't like as he threw the textbook at me which didn't really impress me at all), and also a long chat to the pathologist whom I adored (thanks to my gynae for organising that) - i decided to go ahead with the total hysterectomy on Monday.
Will discuss this in my detail later but need to do lymph massage and also need to wake up early as was out the office for so long today (about 4 hours at the hospital argueing and organising and....)
Anyway, about 95% certain I have made the right choice, which wasn't an easy decision.
Dunno why but when I get sick, it is never straightforward. How to treat my breast cancer when there wasn't a primary tumour (the pathologist told me that happens in 2% of cases) presented me with conflicting suggestions and treatments. And now this. How to deal with and treat a case of markedly atypical endometrial cells suspected of endometrial neoplasia (and the differing interpretations of what neoplasia means) when you are on tamoxifen has been a most perplexing dilemma.
I hope to God I have made the right decision but I do know: had I chosen a D&C as suggested by the pathologist and had it been fine, not sure I could have sat out another six months waiting for an endometrial biopsy.....

Gynae vs pathologist: hysterectomy?

Looking at my description of myself below my photo on this blog, I realise it is all out of date.
Instead of the carefree picture I paint, one which was certainly true at the time, I am now an angst-ridden wreck. I used to worry about my arm because I have borderline lymphedema but now I have a bigger problem, a dilemma really.
I am on tamoxifen and have always known it can cause endometrial cancer but felt the benefits in helping prevent a recurrence of breast cancer were better than the small risk. And, I was informed, it is a slow-growing cancer so we can monitor it carefully.
Sure, now about four years since I have been on tamoxifen, my six-monthly endometrial biopsy, known as a Z-sampler, came back with atypical cells (SEE PATHOLOGIST'S REPORT BELOW). My gynaecologist or gynae (Americans who are reading this, you call them obstetrician-gynecologists, or ob-gyns) phoned me on Friday morning to say that last Tuesday's test showed I had to have a hyterectomy, and my oncologist, The Tango Man, agreed.
Well. Today finally got to speak to The Tango Man who told me there were cells that were suspect but many more that weren't but that the gynae felt it was best to just have a hysterectomy and sort it all out.
However, when I arrived at the gynae today to discuss it further and book my operation for Monday, was almost horrified to discover that the pathologist's report recommended a formal D&C. Not a mention of a hyterectomy.
Suddenly I feel less sure. He says the pathologist didn't know my full history, that the atypical cells are suspect - and true, The Tango Man did say to me that the hysterectomy could find early-stage cancer - and that I could end up with a tumour and then I would be in trouble.
"You are playing with fire," he warned.
But he also suggested getting a second opinion, either from someone of my choice (which I don't have, as he is my gynaecologist of choice) or from the head of obstectrics and gynaecology at Wits University, who is also a cancer expert.
So now this is the situation:
I have booked the hysterectomy for Monday;
I am seeing my gynae on Wednesday midday; and
all my reports etc have been sent to this Wits prof, and I have to phone him on Wednesday at 9.15.
And I am in a hyperventilating state.
I wish my father were alive so I could ask him (he was a doctor). My mother too, for motherly advice. I feel a mess. 
                                         _________________

Ag, just spoke to my one sister instead. She made me feel better. Made me feel I am doing the right thing. She also thinks a hysterectomy seems harsh.
                                         __________________
THE PATHOLOGIST'S REPORT:
"There are scattered groups of markedly atypical endometrial cells present whcih are suspect for underlying endometrial neoplasia....
There are, however, also numerous groups of relatovely normal appearing endometrial cells in the background.
COMMENT:
A formal D&C is recommended for further evaluation of the patient.
DIAGNOSIS:
Endometrial smear:
1. Markedly atypical endometrial cells present.
2. Endometrial biopsy recommended.

I have to have a hysterectomy

Thanks to tamoxifen and what is clearly my bad luck, I have developed atypical cells in the endometrial lining and have to have a hysterectomy within a month.
Getting more info tomorrow when I see the gynaecologist but had a Z-sampler test (scraping of uterus) on Tuesday and was phoned with that result on Friday.
I have been having the Z-sampler every six months since I went onto tamoxifen. Am pretty devastated and scared and unhappy but want to do it as soon as possible so can start the recovery process. Hoping to have it done next Monday.

My not-so-great news

Ever since my gynae called me on Thursday night, I have been toying with what to call this post. Been delaying writing it in fact.
Look, I am still alive. But shocked. Upset. Not charmed. Learning to be strong again.
On Monday I had a Z-sampler or endometrial biopsy because I am on tamoxifen and it can cause endometrial cancer. So every six months I subject myself to this excruciatingly sore test. Wrote about it in my last posting. I was very upset after it all on Monday as it was sore and cost so much and I bled so much afterwards and I just had a feel-sorry-for-myself few hours (which I think is pretty unusual for me).
Then I got on with things. Was a little shaken, but fine.
Phoned on Wednesday for the results. Not there yet. Was told that could happen. Phoned on Thursday again - then the receptionists leave a message for the gynaecologist and he phones back later. Forgot about it until I got a call late on Thursday.
"Irregular cells," he said. "I need to do a D&C".... me, the great professional question-asker (journalist) went dumb, numb, whatever. "What is the worst case scenario?" I asked. "Hysterectomy," he said. "Will I need chemo again?" "No," said he but not sure I believe him.
He sort of arranged a date for the D&C, he told me to be there at 6am, could leave at 1pm/lunchtime and I must speak to his receptionist for codes (for the medical aid authorisation). I said I wasn't at my desk, was walking and was five minutes from the office but he said they were closing up for the day (was almost 5.30pm) and I must phone the next day after 9am.
When I did, the receptionist said she was rushing to theatre with something (his rooms are in a large private clinic - "private" versus "state" being essential for top healthcare here in South Africa). I waited for her to call me back - was having an insane day at work - and when I phoned after 1pm, his rooms were closed for the day.
So I don't really know what is going on. Oh, he did say it was pre-cancerous. But doing a little reading, and I need to know how bad it is. I am freaked out. I did ask: "If I refuse to have a hysterectomy...?" and he responded with "then you will live with a pre-cancerous spot".
Tomorrow I will get a copy of the test results (even if I have to drive to his rooms and demand them from that silly receptionist whom I have had a tiff with in the past), see that my oncologist has a copy of it (when I phoned on Friday they said he was about to go on leave till October but did have a locum - and he has a partner I have seen once before - but they needed to see the report before they could schedule an appointment); and make an appointment to see the gynae so I can arrive with notebook and pen in journalist mode and ask him millions of questions.
When I went on tamoxifen, I was told, "don't worry, endometrial cancer is slow-growing and we can cut it out...." - ja, with half my insides too?
I feel devastated. I cannot believe that my arm hassles (borderline lymphedema and doing 1hr of lymph massage a day, split into about 45 minutes in the morning and 10 or so min at night) and now this, on my way to endometrial cancer and more than likely having an operation that is going to bring my life to a temporary stop (you cannot drive for about 2 months and won't be able to exercise and....)is all from the preventative treatment for the cancer I had. I remember my brother-in-law saying when I was diagnosed: "You're fine now but when they start the treatment...". I cannot believe that the slim chance of the tamoxifen effect has happened to me. Don't know why I thought I was immune but...
Ironically, saw my thyroid doctor on Friday and when I said: "So, I am quite healthy then?" he said: "You are VERY HEALTHY - from the belly button up!" One has to laugh........