Back From Surgery

30 October 2015 Friday

I am back from surgery.  One week mark from surgery.  At the recommendation of my gynaecologist I removed both my womb and ovaries.  This will help reduce the oestrogen in my body and hopefully curb or reduce the growth of my tumour.

First day out of surgery was bad.  I was in pain and breathless.  Ribcage was aching as well due to the surgery.  They had to pump CO2 to balloon my stomach out and explained that because of that my diaphragm could have been forced against the ribcage and this is what that could have caused the pain.  My oxygen was a little low during surgery as well and they took sometime to monitor me.  

During evening at around 6 pm, I was not only sore from the stomach and ribcage but including the back as well.  I am a side sleeper and putting me on my back where I could hardly move from the pain was giving me a lower back pain.  I also started to feel pins and needles on my left hand and the tingling feeling kept increasing.  Informed the medical doctor on duty.  He said it could have been carpal tunneling and putting me on vitamins may help but I was on drip - nil by mouth.  By 10 pm the tingling worsened and he went to fetch a senior doctor.  The senior doctor was my anaesthetist for the surgery, suggest blood test and ECG to see if I was at risk of stroke or heart attack and put me under closer monitoring.  The junior doctor volunteered to do the blood test (though it took the junior doctor 2 trials before he could draw blood) and ECG scan - nope no indication of risk.  Was a long night of monitoring for my doctors and TW.  I suspect that the tingling is caused by my posture.  Tried my best to shift to my side to sleep.

By next morning, woke up and the numbness was gone!  Felt so much better.  Was able to walk around a little, go toilet and slowly went back to dinner.  Recovery is faster with key hole surgery.  But there are 4 holes in all.

Now,  it is a week since surgery.  Much better but not allowed to carry things.  Thankful for the rest but also a little lost - a sense of worry of many things, but I try my best to block them out.  

After surgery, TW has shifted me to our new place to rest.  Feel a little lost with the things a little here a little there.  But he doesn't want me to do anything. And I don't want to stress him.  Hopefully he can get most of the things packed for the larger shift by the movers next week.  

Will try and cook today.  See if can blog.  Favourite Japanese style fish porridge for lunch for the kids.

Trip to Oncologist with New Plan in Mind

15th October 2015.  Thursday.

It has been a tiring week.  The wait to see the oncologist has to be a week.  Apparently, she only has clinics on Thursdays and half a day.

I have been going to school, preparing and teaching lessons for one class. The class has been a gem and the students have been understanding.  I told them about what happened to me apologised that I may be missing lessons.  But so far, apart for one lesson my schedules have been able to match them. For my other class, as they often clash with my hospital appointments I thought it was best they be entirely taken over by another teacher who can then deliver her lesson plans for the topic in a more coherent manner.

Colleagues wise, the unit all knows about my illness. However, a small matter that happened today while waiting to see my onco did bother me.  It is a small matter but it does bug me...I should learn to control my feelings like these.

Today is suppose to be marks appeal day and students are suppose to submit their examination papers with their written appeals for marks.  One colleague who was suppose to cover me in the morning lesson volunteered to grab the submission box - the problem is that it is the same timing as my lesson.  I told him it was okay as I would be in in the morning and could take that lesson personally.

While waiting to see the onco, our heads texted us to ask why my colleague could pick up the box since he was to be at my lesson. I replied that because I was taking back my class.  My head then texted me to tell me why I was replying and somemore saying that I was taking back this class. She sad people were already imbalanced in the team as I was still reporting for work and not seeing all of my two classes and I was taking one class only.

On the spot, I was lost....not knowing what to reply.  I had meant well for the other teacher taking the other class for not going in.  My scans appointments are not fixed, I don't get to decide when to see the doctor and I am not even sure of my treatment plans now - it keeps evolving.  So if I take some and she takes some, it will make a mess of everything - giving her stress and well as me stress. For this class, I started team base learning with them and not all teachers are comfortable with full tutorial method and hence as and when I can take, I will take them.  Sucked in my breath and replied her with an apology for messing things up.  Didn't know what to say.  There is really no point explaining things at times.  Furthermore, she is my long term friend, she must be understress managing my illness for me as well as the team and our emotions.

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Finally got to see my oncologist again after an hours wait.

Told her straight in the face that I was not going to try the clinical trials.  She kept telling me that at anytime I was keen I could inform her again.  - TW (Hubby) says I keep cutting her off when she mentions the trials.  But her focus seems to be on the trials.

Told her that I would like to get my ovaries removed and asked her about financial models which I could pay.  Then I realised that government doctors really have no inkling, unlike my private surgeon who is able to better advice me.

She then decided that she would then put in me on Letrozole after my ovaries are removed.  She again did not check my genes test (which I gotten back 2 days before where my genetics doctor has written to her - same hospital) and seems entirely uninterested in it.

I observed her when she speaks.  She has a lot on her mind and yet on another she does not seem to organise her thoughts well.  This shows up in the way she files her notes.  She doesn't take alot of clinical notes and seems to be thinking of other things.  Maybe she is overwhelmed with other work like her research.  In the end, she ends up talking about the research and the patient seems secondary.

I asked her for how she intends to monitor me and when we would start on Letrozole.  It seems that she had not thought much about it.

"As soon as possible perhaps?  Maybe one or two weeks after you have ovaries removed?  Hm...monitoring......"

"Erm....my blood test results does not show cancer markers."

"Oh yes.  You are right.  Then we can do CT scans.....PET CT will be an overkill."

"How frequent will be the monitoring?  What will the schedule be like?"

"Erm...maybe in the initially it will be more frequent."  Pause.....think...."Yes, but it won't be as frequent as in the clinical trials.  You know if you go on the clinical trials, you will be monitored more closely.  You can consider it and tell me if you change your mind."

Oh no. The clinical trials again....let me get you back on track.

"I am sorry to disappoint.  But I really do not want to go on the trials.  You must be disappointed.  But I am really not considering it at the moment.  So how frequent?  Weekly, monthly?  What is it like."

"It depends...I don't need to see you weekly.  But more frequent initially.  You know....to see how you react to drugs.....Hm....maybe every fortnight or even monthly...."  Another long pause with her shifting eyes over the computer screen. "I guess we could do fortnight first."

"So what should I do now?"

"Erm....ok see your gynae....get your ovaries removed.  I get you an open date appointment and you make an appointment for one - two weeks after your ovaries are removed and we put you on Letrozole."

"Must my period stop?"

"Yes, but I think the onset will be quite fast....I think it will be very fast."

She quickly looked back on the screen again.  I guess that was it.  I would go for my oophorectomy and make appointment.

"Oh do you want to see my PET CT scan images?"

"No....I don't need......wait....on another hand why not."

I passed her may scans and she looks through the images.  Suddenly she pauses for a long while at the scans.

"The tumors are very clear, right?... I think you should start hormonal therapy as soon as possible.  You sure you are not feeling anything for your lungs, breathlessness?"

I was a little taken aback by her reactions, suddenly she had an urgency in her voice.

  "No, I feel fine at the moment," I replied.

" We still need to you to remove the ovaries.  Ok...remember to make appointment 1-2 weeks after the ovaries are removed.  Meanwhile the appointment will be open date for you and if you need anything else and feel any unwell before that call the appointment centre."

Was it me?  Cause, she suddenly became a little more urgent after she saw the scans.

I walked out of the room.

TW remarked, "Hm...she is still only keen on the clinical trials."

"Maybe it is her personality. Maybe she can't get her points across with empathy."  I replied.

Hm....but I don't like her remark.  Can't point out why.  Should try and dispel my doubts about her.  I need to work with her for a very long time.

One thing at a time.  Time to go make appointment with my gynaecologist and seek advice.  I think I will go with her.  I trust her.  Yes, one step at a time.  No time for worries.

Meeting Up with Surgeon Again - Arriving at an Initial Plan

9th October 2015, Friday.

Yesterday's meeting with the oncologist left me depressed and frustrated.  It was mentally tiring...no exhausting both for me and TW.

I have decided to take childcare leave today to spend sometime with the kids to get the negative energies off.  Incidentally, today is children's day.  My mummies friends have been so kind to take leave from their work and take kids out to play.  But I also need to see my surgeon today.  I have decided to run by the clinical trials and treatment options with him.  I trust him.  He has always given me a balanced and informed advice.  TW feels more comfortable with him too.  We made appointment to meet him at 4 pm at his clinic.

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Went to surgeon clinic at 4 pm.  We are a little late, but usually he has many patients.  Went in and said hi to the nurses (do I call them that?  I always don't really know how to say that.)  Told the nurses that TW was looking for a carpark and we are not in a hurry.

We were his last patient actually.  As usually my surgeon is his smiley face often with a tinge of firmness in him.  It's a amazing how he stays so positive when he sees so many cases of breasts cancers all the time.

We sat down and related what happened the day before at NCC.  The frustrations included.  He pondered and remained silent for a while.  Hands clasped together in front of him with 2nd fingers touching each other placed under his nose looking downwards.  He often does that when he is thought. pondering on how he should respond to what I have said.

"Actually, if you think of it.  It is not wrong of the oncologist not suggesting chemotherapy. It's just the way she has put it across ....." He started as he unclasped his hands.  Actually, I am no so sure why.  When it comes out of his mouth,  I am not as agitated as yesterday.  Is it because I have seen him for so many years and I trust him and his character, or because of his smiling face and positive attitude.  Maybe it is the combination of all these.

He then went on to explain to me that I am currently "well" with no complications from the tumours in the lungs and having the tumours  to be hormonal receptive, maybe hormonal therapy would be a less aggressive treatment for me.  Maybe with the removal of the hormones, my tumours may either be stable or shrink.  Of course, the complication is that my blood did not contain any cancer markers and hence will have to do periodic scans.  I  will therefore have to either take injections to bring me to a postmenopausal state, a surgery or radiotherapy to remove the ovaries.  Chemotherapy usually carries greater side effects and hence hormonal therapy may be better.  He went on to bring in the fact that we have never scanned for the lungs except in 2004 when I was first diagnosed with breast cancer.  Perhaps the tumours have been there for 2-3 years and we only found out this year because of the PET CT scan when we wanted to prepare for mastectomy.  In most doctors point of view, I am well and it would not be right to make me sick.  Most people live with a chronic disease except for the fact that mine is cancer and that is what makes it scary.  We may treat it like a chronic disease - keep it in control so that I will not have complications and monitor it for life.

Yes, it seems to make more sense to me.  Yes, I am scared.  Scared that the tumours will grow.  It will be a mindset change.  But  I do feel better now.  In the least, I now understand the treatments - why chemotherapy is not the only option for me and hormonal therapy may just be as good.

We then went on to discuss the clinical trials and the different types of hormonal drugs and the way to monitor the condition.  Spending more than an hour in his office.

Thank you.  Thank you for taking time to explain and let me understand.  Thank you for giving me hope to live on and thank you for relieving my fears a little.  I am still afraid but do feel better,

In the end, I made a resolution to remove my ovaries.  It will cut down the sources of hormones and hopefully bring the tumours to remission.  In the case of where it should be done, at SGH I am a subsidised patient  and at KKH I am not and finally at Mt E - it is a private hospital.  So there are 2 factors to take care of : my comfort and cost.  Finally, we decided that we should get it done with my gynae at KKH.  It could be more expensive than SGH but I trust my doctor and that should be better.

Now, I have to inform my oncologist on my decisions.  She has be agreeable on it.

Various Treatments Proposed By Oncologist from NCC

8th October 2015, Thursday

Went to see my oncologist at National Cancer Centre today.

The moment I saw her, she suggested that I go on clinical trials for 2 of the research projects under her.  These are for new drugs produced by Novartis and undergoing HSA testing for approved use for use in Asian patient.  Name of drug LEE011 (not yet named):

Trial 1: (Phase 1 Tria1) LEE011 + Letrozole
Aim of trial is so determine the highest dose of LEE011 that is tolerated when added to letrozole and to determine the safety and effectiveness of LEE011 and letrozole.
This trial is for post menopausal women only.  And would require me to remove both of my ovaries.

Trial 2: (Phase 3 Trial) Tamoxifen or a non-steroidal aromatase inhibitor with goselin + LEE011 Placebo
Aim of trial is to  determine whether LEE011 or placebo when added to standard treatement for premenopausal women will help to reduce the growth of breast cancer cells in premenopausal women who are hormone receptor positive. This one would not require me to remove both my ovaries.

My doctor explained that she would hope that I would go on one of these trials, the treatments would all be paid for and there would be transport allowances.  Furthermore, this was a once in a lifetime opportunity that I should jump on.

But seriously, was I excited?  No, was I happy and eager to jump on to the wagon?  No.

I had come in for a treatment.  I was hopeful because although I have multiple tumours - they are small.  (This is confirmed by my surgeon and this oncologist as well).  Apart from the PET CT scans, there were no indications that my breast cancer has attached to my lungs.  I am not breathless, there is no fluid accumulations.  My tumours are ER+, PR+ and HER- , which according to various websites and my surgeon is responsive to hormones and not the most agressive type.

I had come in for a treatment but here I am being viewed as a potential "guinea pig".  And though I do not entirely fit the profile, I am asked to remove my ovaries so that I can be part of profile.  Am I upset, yes, entirely.  TW who was at my side was visible upset as well. To add up, the onco quickly said that she would be most glad to write a letter for me to be referred to my gynecologist in KK Hospital.

I was then asked to speak to the 2 research assistants who briefed me about the trials and schedules.

The research assistants took pains to explain about the trials and procedures that I had to go through if I were approved. But they were not able to answer my questions:
Why is this treatment proposed for me?  Is it supposed to be better for cancer patients?  How is the LEE011 drug supposed to be a better drug, does it provide a better prognosis, a better chance to shrink the tumour?  What are the standard treatments in the case I do not have

They were a little caught off guard by my questions and asked if I wanted to see my oncologist again.  I knew it was no fault of theirs and replied yes.  They hurriedly went off to see my onco but a minute later came back to declare that she has taken off.

I was lost and asked them so how next?  I had many questions to ask but no one to provide answers.  Access to oncologist is limited for government hospitals.  I really felt frustrated and start thinking,
 "So this is what it feels like to be in a government hospital, right?"

I went off to make payment and followup appointment - it is to be a lengthy process right? Especially with National Cancer Centre where your oncologist sees patients only once a week for 1/2 a day. So if I reject her for clinical trials, does it mean that we go through another round of consultations before I could be given treament.  Somehow, it does not seem right to me.  I really don't like the drag.

While making appointment, the research assistance suddenly cut in.  "Doctor is in office, she came back to grab something.  You want to grab her before she goes off again?"

I quickly left the nurse and went into the office again.  Doctor did not want to answer my questions - she was not able to say if the prognosis is better for patients on the trials as there are no statistical data.  It was still in trial stage, some patients tumour recedes, some stays the same.  They are same for patients with chemotherapy.  There no longitudinal studies for the trials as well as for long term effects, increased risks possible in the long run as well as long term effects.  No data on drug resistance etc. as these are all part of research guideline.

She suggested in all 3 more possible treatments with 2 as chemotherapy and asks me to think about it as she was in a hurry to go off.

I felt horrid after all the chats.  She made me feel like I had no hope.  She made me feel like a guinea pig, an experimental mouse.  I needed to speak to my surgeon.  He would be able to better advice me.

Changing of Blog - My Battle with Cancer Starts Again

10 October 2015, Friday.


I am always saying sorry.  But this time I need to say it again.  I am switching this experiment in food blog to blog and journal my fight in cancer.

Yes, it has relapsed again.

I am a cancer survivor and now a cancer patient again.  Officially a stage 4 breast cancer patient.   I was diagnosed in 2004 with breast cancer, I underwent a lumpectomy and subsequently chemotherapy as well as radiotherapy.  The cancer has been in remission then.

Then last year after I tore my muscle while learning to play badminton, I noted a swelling and lump at the left breast again, but much higher up closer to the chest wall.  MRI scans in 2010 did not reveal anything.  But the mass persisted.  In April 2015, I met my radiologist, the medical officer noted that this could be likely tissue hardening from the radiotherapy effects.  I mentioned it to the visiting doctor again in National Cancer Centre lately during a followup in August and she adviced that I should quickly check with my surgeon.

Suddenly, I was caught in a whirlwind of events.  First mammogram showed nothing, but ultrasound revealed a small regularly shaped mass on the left breast.  My surgeon, being careful decided that I should have it out, though I was assured that based on the shape it is likely benign.  The mass was sent for testing and the bad news started one after another.  Results showed that is is malignant, I would have to go through a masectomy.  I had choice of one or two breast.  But before that to be on the safe side, it would be advisable to check if my other organs are cleared.  A PET CT scan was to be done.

Somehow, I had a premonition.  I don't know why, but when I was diagnosed in 2004 it was the same thing: First was a just a lump but fine needle biopsy showed inconclusive results, but because of my young age then, I was given a high chance that the lump was to be benign.  But after removal, it was tested to be malignant.  I was to undergo a second operation to remove more of the tissues and determine the spread.  2nd wave of bad news came - during the lumpectomy some of my lymph nodes were removed.  The cancer had spread to the lymph nodes.  Then a series of scans took place, bone scans, CT scan etc.  3rd wave of "bad news" - CT scan showed my liver had a large mass.  It is either tumor or benign blood vessel - hemangioma they call it.  I was lost entirely where would this wave of bad news end.  I was then whisked off to do an MRI scan.

Finally, at the next visit to my breast surgeon.  He declared that it was simply hemangioma - a clump of blood vessel that I was born with and I was cleared to go for chemotherapy and radiotherapy.

This time, it is the same, the lump, then masectomy and somehow I have a dejavu feeling going for the PET CT scan.  It overwhelms me.  To the point, when I sit in the PET CT scan machine, I start to panick,  I feel like jumping out.  I don't know why.  And somehow when I later walked into my breast surgeon office, I felt a foreboding sense of bad news.

Yes, the PET CT scans shows that I have 4 nodules in my both my lungs,  2 on the left, 2 on the right with 2 on the top and 2 on the bottom, I will need to go for lung biopsy before the doctors can prescribe any treatment.

I have since done my lung biopsy last Thursday.  It is cancerous.  ER positive, PR positive and HER2 negative.

Doctor says I have the best case scenario in a bad situation.  Now waiting for treatment options.

My fight for cancer starts again.