Kidney Cancer Part 2: Two Oncologists Two Different Opinions – Is Sutent indicated in this case?

LC underwent an operation to remove his right kidney.

Histopathology report dated 19 August 2011 indicated, “Right radical nephrectomy specimen and paracortical node:

  1. Papillary renal cell carcinoma, Stage 3 (pT1b,pN1,pMx).
  2. Paracortical lymph node with tumour metastasis.
  3. The resection margins of ureter and renal vessels are free of tumour.

LC and his family came to CA Care again on 11 September 2011. The following are excerpts of our conversation that evening.

 

 

Sister-in-law:  After the operation, he was referred to the oncologist of the hospital.  So they went to see the oncologist and later went to seek a second opinion of another oncologist.

Chris: What did the first oncologist say?

Wife:  He said, you need to take medication to prevent the cancer from spreading. He needs to take the oral drug, Sutent.

C: How long does he need to take the Sutent?

W: For six months.

C: How much that cost you per month?

W: Approximately RM 13,000 to RM 15,000 – not sure yet.

C: What do you expect to get after taking the drug?

W: The doctor said to control the cancer.

C: Then you went to see another oncologist – what did he say?

W: The second oncologist said there is no need to take any medication. What you need to do is to take care of your body and health. Your diet is also important. Your mind must be relaxed and do not be afraid. Open up your mind. There is no medication to take.

C: Is this person an oncologist?

W: Yes, cancer doctor – an oncologist.

C:Is he really an oncologist?

SIL: He is a new chap. I think he is a new oncologist of the hospital.

W: He is about in his forties.

C: Oh, he will find it hard to earn a living then.

W: He is a very nice person. He advised us to be open minded. You need to have a fighting spirit. You should not be afraid.

C: When you come here, I also tell you the same thing. Did the second oncologist tell you to eat right?

W: Yes, we need to take care of the diet. Don’t eat too much meat.

C: And he told you not to take the oral drug (Sutent)?

W: Yes, yes. And then if you want to take Chinese herbs, it is alright. You can take Chinese herbs.

C: He never gets angry about you taking herbs?

W: No.

C: Oh, so he said you can take Chinese herbs?

W: Yes, since you have no medication to take, and if you believe in the herbalist, go ahead and take his herbs.

C: Did you tell him you wanted to take herbs? And he did not get angry with you?

W: No, the second oncologist agreed with us. But the first oncologist said we cannot take Chinese herbs. But the second oncologist said it is okay to take herbs. But don’t get cheated. If the herbs are not too expensive, go ahead and take them if we have confidence in the herbalist.

C: So, all in all, the second oncologist asked you to take care of yourself, don’t think too much and if you want to take herbs it is okay.

W: He also said we need to exercise.

C: Very good. This oncologist is really a great guy!

SIL: Very good.

Comments

I cannot believe what I have heard! Twice, I asked if the second doctor that they consulted was indeed an oncologist! We salute you doc., for being so open-minded.

Place yourself in LC’s situation. After the operation, he faced a real dilemma. Two different cancer experts provided two divergent opinions. What to do now?  The family came to CA Care for help. Let us get this straight. It is not for us to make decisions for the patient.  Patients need to make their own decisions – because it is you, and you alone, who will have to bear the consequences of that decision.

If you are faced with such a dilemma, we suggest that you ask the following questions and then seek out the answers for yourself. Based on what you learn, make your decision that makes sense to you.

Question 1 to ask yourself:  What is Sutent? What is it used for? Go to Google search.  And you get this: http://www.sutent.com/  This is the official site of the drug company.

Answer: SUTENT is used to treat advanced kidney cancer (advanced renal cell carcinoma or RCC).

Question 2 to ask yourself:  What are the side effects of Sutent?

Answer: You may have side effects or reactions to SUTENT. For many patients, these may be managed. However, some side effects can be serious.

The following are possible side effects

  1. SUTENT can cause serious liver problems, including death.
  2. SUTENT may cause heart problems, including: heart failure, heart muscle problems (cardiomyopathy) and abnormal heart rhythm changes.
  3. SUTENT may cause high blood pressure
  4. SUTENT may cause bleeding sometimes leading to death. Serious bleeding problem such as painful swollen stomach (abdomen), vomiting blood, black sticky stools and bloody urine
  5. SUTENT may cause hormone problems, including thyroid and adrenal gland problem.
  6. Tiredness that worsens and does not go away
  7. Loss of appetite
  8. Heat intolerance
  9. Feeling nervous or agitated, tremors
  10. Sweating
  11. Nausea or vomiting
  12. Diarrhea
  13. Fast heart rate
  14. Weight gain or weight loss
  15. Feeling depressed
  16. Irregular menstrual periods or no menstrual periods
  17. Headache or change in your mental status.
  18. Hair loss
  19. The medicine in SUTENT is yellow, and it may make your skin look yellow. Your skin and hair may get lighter in color
  20. Weakness
  21. Fever
  22. Gastrointestinal symptoms, including diarrhea, nausea, vomiting, mouth sores, upset stomach, abdominal pain, and constipation.
  23. Rash or other skin changes, including drier, thicker, or cracking skin
  24. Blisters or a rash on the palms of your hands and soles of your feet
  25. Taste changes
  26. Pain or swelling in your arms or legs
  27. Cough
  28. Shortness of breath
  29. Bleeding, such as nosebleeds or bleeding from cuts.

Question 3 to ask yourself: If you take Sutent, you run the risk of suffering from the above side effects. Is it worth it? What benefit can you expect from Sutent? Can the drug cure your cancer?

Answer: SUTENT may slow or stop the growth of cancer. It may also help shrink tumors. Take note, it may only. But it may not do what it is supposed to do.

This is one of the research results that were used to justify the use of Sutent for kidney cancer.

Patient and Methods:  Seven hundred fifty treatment-naïve patients with metastatic clear cell RCC were randomly assigned to sunitinib 50 mg orally once daily on a 4 weeks on, 2 weeks off dosing schedule or to IFN-alpha 9 MU subcutaneously thrice weekly.

Results:  Median overall survival was greater in the sunitinib group than in the IFN-alpha group (26.4 v 21.8 months respectively)

Take note of the above research results:

  1. If Sutent was taken, patients survived 26.4 months, if patients took IFN-alpha injections they survived 21.8 months. This means Sutent prolonged survival by only 4.6 months.
  2. To live longer by 4.6 months, you need to spend about RM 15,000 per month. Perhaps for those who can afford to pay, money is not an issue. But for those who are poor, money is a big issue indeed.
  3. Now, if you are still “healthy” – meaning able to eat, sleep, move around and have no pains. Do you think you need to take Sutent? It does not look like you are going to die anytime yet – do you need to survive longer by 4.6 months?
  4. The question which no one can answer is, what happens if you don’t take Sutent at all? Do you die sooner, or do you die later? No research is ever done on that. But based on the possible side effects of Sutent, how sure are we that Sutent really prolong life if compared to no treatment? How sure are we that patients cannot live much longer even without taking Sutent?
  5. Is Sutent a medicine to cure kidney cancer? Nobody is talking about curing kidney cancer. There is no mention of cure at all anywhere in the research report.

Patients, make your own decision. Again, as I have said earlier, whatever you do, make sure that it makes sense to you.

Alert … Beware

I accessed this link on 18 September 2011: http://www.druglib.com/adverse-reactions_side-effects/sutent/seriousness_death/

Sutent (Sunitinib) – Adverse Event Reports – Death

Cases resulting in death (704). You shall see the entry like this …

Possible Sutent side effects / adverse reactions in 40 year old male

Reported by a physician from Turkey on 2010-03-31

Patient: 40 year old male

Reactions: Thrombocytopenia

Adverse event resulted in: death

Suspect drug(s): Sutent

 

Possible Sutent side effects / adverse reactions in 52 year old male

Reported by a physician from United States on 2010-03-31

Patient: 52 year old male, weighing 70.0 kg (154.0 pounds)

Reactions: Renal Cancer, White Blood Cell Count Increased, Disease Progression

Adverse event resulted in: death

Suspect drug(s): Sutent

Read more: Sutent for Advance Kidney Cancer https://cancercaremalaysia.com/2011/09/18/sutent-for-advanced-kidney-cancer/
Lung-Brain Cancer: An Impossible Healing Part 3: Reflection and Confession of a Husband https://cancercaremalaysia.com/2011/09/10/lung-brain-cancer-an-impossible-healing-part-3-reflection-and-confession-of-a-husband/
Read more about Kidney Cancer:  https://cancercaremalaysia.com/category/kidney-cancer/

Breast Lump: Different Surgeons, Different Approaches and Different Costs of Surgery

CR (S-19) is a 73-year-old female from Indonesia. Sometime in June 2011, she felt a lump in her left breast. In August 2011, she came to a private hospital A in Penang for consultation. A breast specialist saw her, did an ultrasound and told her that she had a 3 cm mass in her breast. CR had to undergo a biopsy to determine if it was a cancer. CR was not agreeable to the biopsy, paid RM 60 for consultation and walked away.

In the same afternoon, CR and her two daughters came to CA Care. We were unable to say much because the doctor did not give her anything apart from saying that she has a mass in her breast.  On this visit, we could see they were rather desperate and were at a loss as to what to do next.

Second Opinion

We suggested that CR go and consult another doctor. We gave three names of surgeons in the private hospitals here. It is up to her to choose which one to go to. We also suggested some questions that she might want to ask the doctors.

The next day, CR and her daughters came back to report what had happened the previous day.  Apparently CR went to private hospital B and asked to see surgeon X but someone at the reception desk diverted her to surgeon Y of the hospital.

Dr. Y did an ultrasound of her breasts. Lumps were found on both the left and right breasts.  Subsequently, CR did a mammogram. There were pleomorphic calcifications in an area of 7 x 4 cm at the upper outer quadrant of her left breast suggestive of carcinoma.

Dr. Y told CR that she had to undergo a biopsy. But CR said she would rather have the lump removed right away without having to undergo a biopsy first. Dr. Y replied: “Saya tidak mahu bunuh payudara anda (I don’t want to unnecessarily kill your breast).” The biopsy costs RM 2,800. If it is found to be cancerous, a mastectomy follows later, at an additional cost of RM 12,000.  Dr. Y also asked CR if she has taken any herbs or supplements for her problem. Dr. Y said, “Don’t take all these. They are not effective.”  Then Dr. Y asked CR, “Why do you have to come to Penang. You can go home and do the surgery in Indonesia.” For consultation CR paid RM 46.00 while the mammogram cost her RM 383.00. Obviously, CR and her daughters were not at all satisfied with this consultation.

Third Opinion

CR came back to CA Care again the next day. We suggested that they go to hospital C and consulted with Dr. Z. The next day they came back to tell us what had happened. They showed the USG and mammogram reports to Dr. Z. As expected Dr. Z said CR has to undergo a biopsy. The daughter suggested that her mother would rather have the breast removed without having to go through a biopsy first. Dr. Z laughed aloud! He was in a jovial mood in spite of having to see many other patients. Dr. Z said: “It is fine. I would have the lump removed totally. Then we will send it for testing immediately. We’ll wait for about half an hour. If it is cancerous I would remove the whole breast. If it is benign I would close it back without having to remove your breast.” Dr. Z also said it is good that CR has not done any biopsy before. Dr. Z said, “It is not good to poke here and there.” The total cost of the mastectomy is RM 6000. If only the lump is removed the cost is RM 2000.

CR’s visit to the third doctor seemed most satisfying. She said, “Dr. Z seems to be more humane and he answered my questions unlike Dr. Y who would not want to talk much.”

We asked CR, “When you first came here you appeared rather lost. After coming here three times, do you now know how to handle your problem?” The answer was, Yes! In fact, by looking at their faces we knew that they were pleased and were more confident.  And costwise CR will have to decide to do the same kind of surgery that cost RM 14,800 or RM6,000!

Comments

Dr. Donald Murphy in his book, Honest Medicine wrote, “Medical science is very subjective … which does not provide clear cut, black and white answers.” Unknown to many patients doctors differ in their opinions and approaches to doing things, so patients ended up being treated different by different doctors even though the disease is the same.

In this case, CR would not have been a satisfied patient if she were to just do what the first two doctors asked her to do. She found the third doctor to be more suitable and sensible in approach. I always tell patients, “Go for a second or third opinion. Find a doctor who you think can provide you with the comfort and confidence to allow you to go through your ordeal. What is the point of going to the famous if he does not have time for you?  You may end up talking only to  his nurse most of the time while you pay his fees through your nose.” So if you are not happy with a doctor, go find another one to help you.

Dr. William Untereker at Penn Presbyterian Medical Center said, “One of the biggest mistakes patients make is not getting a second opinion. People’s life goals are different and treatments are different. If there is any serious risk to a recommended treatment, the patient should seek a second opinion.”  (http://penn-medicine-advances-in-medicine.blogspot.com/2011/02/it-pays-to-get-second-opinion.html).

Dr. Paul Turek (http://www.theturekclinic.com/urologist-san-francisco.html) said, “the discussion that you have with your doctor should make sense to you, and you have a right to have all of your questions answered so that it does make sense to you. I always tell patients that if it doesn’t make sense to you, then don’t do it.

Breast Lump: Two Experts, Two Different Opinions – you like that?

Pet (not real name, H621) is a 42-year-old female. Sometime in early 2011 she felt a lump in her right breast. She did not see a doctor until May 2011. An ultrasound on 24 May 2011 showed:

  • An irregular hypoechoic mass at 12 o’clock position of her right breast. The size is 4.4 x 3.0 cm. The margin is irregular.
  • Another  three hypoechoic nodules noted at 8 and 10 o’clock position of right breast and behind the nipple (0.5 x 0.7 cm, 0.5 x 0.5 cm and 1.7 x 1.8 cm)
  • A right axillary node is also seen, 0.9 x 0.8 cm.

Impression: Findings in keeping with Ca breast.

Trucut biopsy was performed. The histopathology report indicated: Invasive ductal carcinoma, NOS; grade 3.

Pet met a surgeon of a private hospital who told her that she needed a mastectomy. However, before surgery, she has to undergo chemotherapy first. This is to shrink the tumour. She may need 2 cycles of chemo or more, depending on the outcome.

Not satisfied, Pet went to see a breast surgeon at a government hospital. She was told there is no need for chemo. The surgery can be done right away.  Confused?

Pet came to see us on 3 June 2011. Watch this video and listen to our interesting conversation.

Comments

It is hard enough to be told that you have cancer – that applies to everybody! Then, you have the high hope that the experts know how to cure you. You met the surgeon. Oh, he said, the lump was too big. Go for chemo first. So there you are having to shuttle to the oncologist. The oncologist said you might need two cycles of chemo to shrink the lump. But you may need more. It all depends.

You wondered aloud, even if you had surgery or chemo, the cancer may come back again?  You make known this concern to your oncologist, hoping to get some reassurance. Imagine the answer he gave you – Do you have any disease that medicine can cure you?  Then he equated that with diseases like diabetes or hypertension. See, there is no cure. Instead you will get hooked to the drugs until you die! But you may wonder, is the analogy correct or logical? Is it logical to believe that you will need to depend on chemo all your life? Chemo drugs are toxic – they night just kill you after a while unlike the diabetes or hypertension pills.

Not satisfied with the first surgeon and the oncologist, you decided to seek a second opinion. Indeed a correct thing to do, so they say. So you went to see a breast surgeon – after all, a breast specialist is supposed to know more than other experts about the breast. Furthermore he is from a government hospital. In your mind, you tend to trust doctors in government hospitals than those in the private hospitals. You know la, these days.  At least those in the government  are there not for money – rather, as a national service to the country.

To your surprise, this breast expert said there is no need to do chemo first. Go straight for surgery! Now, you are at the cross road – another confusion in your mind.  How is that, two experts tell you two different stories. Who is right? Who is a better expert then? Whom to listen to now? They say, medicine is based on scientific fact – but in this case, one expert must have got his fact mixed up! Both experts cannot be right in trying to solve your “simple” problem. Or is it truly simple?

Since both doctors say different things, why not turn to a “quack” – the non-medical doctor and let’s see if he can pull out another trick. So, there it is – you went to CA Care and met with a Dr. Chris, a Ph.D. not a M.D. You had a chat with him. You were confident and hoping that he would say – No surgery, just take herbs and you shall be well. But you were disappointed. He wanted you to have your breast cut off as well – like those two doctors. The only consolation is that after surgery, you could see him again if you decided not to undergo chemotherapy or radiotherapy.

In your discussion with him you also learned that doctors are basically disease- and drug-orientated. The job of the surgeon is to cut. The job of the oncologist is to chemo. They have nothing else to offer more than that. You will be left on your own to fend for yourself after you leave the hospital.  This is like what Barry Boyd, M.D., wrote in his book, The cancer recovery plan, “Many doctors don’t bother to counsel their patients after treatment. Once cancer treatment is completed, most patients are left on their own to cope with the rest of their lives. This is what I call falling off the cliff. Patients are left in free fall.”

Of course, you are told: “There is nothing else to do. Go home and do what you want to do. Eat what you want to eat.” You just did exactly that – followed what the experts told you. And if the cancer comes back again, there is nothing to worry. Go back to the hospital again. You can go through the entire procedures again – the devastating regimen you did before. There is still hope –  that’s the saving grace!

Perhaps that is why you don’t get well? Do they ever teach you how to get well? Do they teach you how to increase your odds against recurrence of the cancer? No, only the “quacks” in the alternative medicine do that.  You may now wonder – are those in the alternatives really “quacks”? Who are the real quacks in this case?

In this video, Pet was trying to understand or defend her doctor – to be fair, we cannot blame the doctors if they are not sure if they can cure your cancer or not, in spite of the chemo.  After all everything depends on the patients themselves. Yes, exactly, that is true but such thinking is not scientific! When experimenting with the chemo drug to see how effective it is, factors like diet, lifestyle, personality, lifestyle, etc., do not count. They are not supposed to exist. You get cured by that drug – nothing else count. So to say that it all depends on the patients whether you get cured or not is “scientifically flawed” thinking. And in CA Care,  it is this flawed thinking that is important and must not be ignored!

Two questions are always in the minds of most cancer patients. One, is the chemo doing going to be effective? Two, will the cancer come back again after the surgery, chemo or radiation? Every cancer patient is seeking for a cure. Unfortunately, scientific medicine cannot give you any definitive answer to these all-important questions. One renowned oncologist of Singapore put it this way: “Oncology is not like other medical specialties where doing well is the norm. In oncology, even prolong a patient’s life for three months to a year is considered an achievement. Achieving a cure is like striking a jackpot. Not all cancers can be cured.”

We wonder, how many newly diagnosed cancer patients have gone through such a dilemma. If that is the situation you are in, take comfort, you are not the only one feeling lost, disappointed, frustrated or helpless. Many are just like you too.

Penelope Williams, a Canadian breast cancer survivor, was diagnosed with breast cancer in late 1988. She had surgery, chemotherapy and radiation – a treatment referred to as “slash, poison and burn”.  In her book, New Cancer Therapies – the patient’s dilemma, she wrote in detail the issues facing a cancer patient after being diagnosed with cancer.

She reasoned, “There had to be a better way. Why, in these days of modern medicine, was the treatment for cancer almost as bad as the disease?”

In spite of all these treatments which they claim to be scientific, “there is no certainty of a cure for cancer, the specter of recurrence is always lurking.”

Surgery “is invasive, disfiguring, often unnecessary, and rarely gets all the cancer despite the frequent claim by the surgeon that “we got it all”; according to some, surgery actually encourages the proliferation of cancer cells.”

Chemotherapy “ Is the cornerstone of modern cancer therapy… it kills  more patients than it cures, is useless for many cancers, causes secondary cancers, and is so toxic it destroys the immune system, leaving  the body susceptible to other diseases, including new cancers. To find a chemical that will make cancer disappear and leave normal tissues unharmed would be like finding a drug that you can take by mouth that will make one ear disappear and not the other.”

“Radiation therapy was at best an inexact science, at worst, highly dangerous to patients. Fifty years later, this observation still applies. Even in low doses, it can cause cancer and is highly invasive, painful and disfiguring. It can only be successful in curing cancer in dosages so high as to kill the patient. It damages body organs and tissues and actually increases death rates when used as adjuvant treatment for such diseases as breast cancer.”

“For many people, the anguished struggle to sort out treatment options comes down to a decision whether to go with the heart or the mind.  Ultimately, it must be your call because it is your body and your mind that are in danger of becoming the casualties, not of cancer, but of the cancer wars. So what to do? How to choose? “