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.
Thursday, October 8, 2015
Wednesday, October 7, 2015
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.
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.
Subscribe to:
Posts (Atom)