NSCLC T4N2M0 & Total Knee Replacement surgery risks

[Kizeron]

My father was diagnosed with NSCLC T4N2M0 on the 7th of August. We are now awaiting the results of a PET Scan. In addition to this we would very much like to pay for my father's total knee replacement surgery quickly before he begins his radiation therapy. I have detailed all that is happening and what we a pursuing on my blog http://www.azizlive.com

We have been told my the surgeon that the risk of death during the knee replacement surgery is increased because of my fathers tumor in the lung. However, my father is still able to walk, has very slight shortness of breath and does not cough any blood or experience any pain in his lung.

The type of anesthetic they would use is spinal, but the surgeon say's that the risk of death is 1 out of 20 (5%). I have asked him to provide some evidence and he has said he will get back to me.

Can anyone give me some guidance as to what to do. The problem in the UK is that we do have to rely on the NHS who are very good but they may sometime way up the overall benefit and even (although they do not say this) cost when treating patients. I'm a little afraid they may be trying to get out of going ahead with the surgery because of my father's condition.

Also they have only offered palliative care which to be frank is not what I was expecting. The doctor has said that chemotherapy is not an option as NSCLC does not respond well to it.

Please help.

[Kizeron]

Please can someone advise me.

[winnymac]

Kizeron,

I can't really help much but I am surprised about no chemo. My dad had chemo and radiation which did work for about a year and then the 2nd line chemo when his cancer came back worked really well. The only problem was that he was not up to continuing it as he got so tired.
I would think that your dad might need all his strength to fight this cancer and the surgery might just be too draining.
Is there anyone else you can talk to about getting the chemo?

Linda Parker
Oregon

[brainman]

Kizeron, I am sorry about your father's diagnosis. It does sound like you are becoming aware of some of the basic information used by doctors to decide on chemotherapy option. Unfortunately, your father's case is further complicated by his need for a total knee replacement. I do not know much about the complications this could cause. I do understand why they would use a spinal anesthetic... less impact on his breathing which is already compromised by the lung cancer.

Do you have the option to get a second opinion about the chemotherapy? If you do, I would ask for one.

[pbj11]

Kizeron,

I'm sorry about your father. Lung cancer specifically causes a higher incidence of DVT (deep vein thrombosis) or blood clots. Knee replacement surgery also has a risk of DVT. To have knee surgery compounded with lung cancer is a very dangerous proposition. It is not about the anesthesia vs. spinal. It is what happens during recovery from the surgery. My SIL's mother had knee replacement and even with heparin, she had a clot in her calf. My son had his ACL replaced last winter and had to take heparin shots everyday for 10 days or so following the surgery. My SIL had routine knee surgery and three weeks later threw clots into her lungs and almost died. She is lucky to be alive. This is just the risk for people without lung cancer -- imagine how the risk multiplies with lung cancer. Some people also have congenital clotting disorders that remain unknown unless specifically tested. That is what happened to my SIL.

I'm not trying to scare you, just give you some real experience information. Obviously my son came through his with flying colors, but he doesn't have lung cancer either. He may have the congenital blood clotting disorder and the doctors were very upset when they heard about this familial thing before surgery.

That is just my take. I'd handle the cancer and worry about the knee later.

I understand how hard this is for you. My Dad was in a similar position many years ago with cancer and knee issues.

Best of luck in your decision.

PBJ

[Kizeron]

Another day and another upset.

The good news is, the private Orthopedic surgeon has all but said yes to replacing my father's knee. They have given a date of the 29th of September.

We also regrettable received the results from the CT Pet scan. They the NHS in the UK have abandoned my father and are only offering palliative treatment.

I'm upset and really don't know how to interpret the results. Can someone please help me, please go to my blog where I have published all the results of the PET scan.

Please advise, I'm pushing the GP to set up a second opinion.

abdulazizuk.blogspot.com

[pbj11]

Kizeron,

This may be a long post, so be prepared.

I've gone over all of the PET scan/blood work information on your blog-site. (Very nicely put together, I must say.)

The very first and most important issue is to clarify what palliative care means. It is simply a technical medical term used for late stage cancer patients where no cure is possible, but they can receive treatment. My husband has been on "palliative" care for almost 2 1/2 years now and gone through seven different chemotheraputic agents. Palliative does NOT mean they can't treat the cancer aggressively.

Understanding that your Dad is in a socialized medicine country, you must push hard for the best available treatment for him. They WANT you to go away and don't want to spend money on his case. That was made abundantly clear in their first page with the dismal stats they gave. Do not go away, really lean into them and become a strong advocate for aggressive treatment for your Dad. (If that is his wish.) Your Dad's report reads far better than my husband's initial PET scan did. Granted his SUV levels are pretty high and he has squamous cell, while my husband has adenocarcinoma. Chemotherapy can and does do remarkable things for many, many people.

Did your Dad have a biopsy to determine that it was Squamous cell? They must have to give that diagnosis. The only agent that squamous cell would preclude them from using would be Avastin. Squamous and Avastin are too dangerous for risk of hemorrhage. (Also Avastin is rarely used with a history of brain mets or any history of bleeding.)

The most common first line therapy in the U.S. is Carboplatin/Taxol. I think they tend to use Carboplatin with another agent in other countries.

The bottom line is, there are the following agents available: Carboplatin, Cisplatin, Taxol, Taxotere, Gemzar, Navelbine (Vinorelbine), (not Avastin), Alimta, Camptosar (Irinotecan), Etoposide, and Tarceva (which the NHS doesn't cover, but does have modest response for squamous cell sub-types.)

Your Dad's platelets and WBC numbers seem high. His hemoglobin is low. Is he currently taking any chemo? Or blood enhancers? What are the doctors saying about these diverse counts?

If your Dad wants to fight this cancer, then I agree with Linda (winnymac) that he needs all of his strength to utilize chemotherapy that is available.

I am NOT a doctor, just a wife who has read every report I can to try and understand what my husband is facing. I do a lot of research online for new clinical trials and agents that may do some good to help my husband. Take what I've said in that light.

I truly do understand your need to make your Dad feel comfortable with the knee surgery. I stood and babbled to the Doctor's about knee replacement, when my Dad was in the hospital with terminal liver cancer. He had injured it way back during WWII and my family so wanted to relieve some of his pain. The doctor looked at me like I was from Mars. I wasn't seeing the forest for the trees. I wasn't looking at the whole situation. My Dad died late that same night. Please be aware of opportunistic Doctor's who are willing to take your money in a private practice in a NHS country.

I wish you and your family nothing but the best and hope you will keep us apprised of your decisions.

PBJ

[Kizeron]

PJB,

Thank you very much for taking the time to go through the results and write the reply.

You are correct to assume a biopsy was done and non-small cell Sqaumous cancer was detected in the mass located at the bottom left lung.

After reading your post with regards to the knee surgery I am having doubts about encouraging my father to go ahead with it. However, he has been waiting on the NHS for over 2 years for the procedure.

At the moment he is a broken man and the thought of having his leg fixed is really motivating him. He understands the risks and is afraid that after chemo which we are unsure about also, he will never have his leg fixed.

Since his diagnosis he has been confined most of the day to the sofa in the lounge. He gets up in great pain and goes to the bathroom. The limited movement is affecting his digestive system, his strength and his overall mental alertness.

He has lost over 3 stone and is now approx 10 stone 7 pounds.

It's unbelievable that before he was admitted to hospital, despite the sweating, shivering and temperature he opened the family store at 6.30am every morning, went to the bank and stood on the check out for hours at a time.

Since the diagnosis, and the 10 days he spent in hospital, he has lost a great deal of strength.

Mentally he is not the same as the father I knew, but the thought of replacing his knee has really perked him up, he is a lot happier which is great.

I'm still quite confused with regards to the PET scan. The doctor did not really explain the situation as my father was there and I did not want him to know the full picture. He was already drained and adding that the cancer has spread would have just made his condition worse.

From what I understand, they have detected small cancer tumors in his right lung as well as the main one in his left lung. They have also detected possible cancer in his bone marrow and possibly in the rectal area.

I will clear this up with the lung specialist next week but was hoping someone could clarify in the mean time.

His Hemoglobin is is low and we are trying to find out more. I asked the doctor and he said it was because of the cancer. I asked hi why my fathers mouth was dry, he said it was because of the cancer, I asked him why my fathers hearing was weaker than before, again he pointed at the cancer.

It seems like the cancer is an easy answer to everything.

Whilst I love the NHS, there are times when the NHS can not cope or do not have the capacity to cope. In emergency situations, the NHS shine, you can go in and they'll check you out day or night. I'm just very disappointed at the moment that we are not being given enough information. When I asked about Tarceva over the phone, the nurse passed on the message that the specialist said it had a mixed response. Is that an answer???

Anyhow, thank you very much for the reply. I'll contact the specialist next week and ask about the various Chemo agents you listed and whether they are suited to Sqaumous cell cancer and are available on the NHS.

Tarceva is available on the NHS, but only in Scotland. If it means us moving we are more than happy to do so.We have family there and my work will understand. The question is, is it something my father can have and will it benefit him.

Look forward to your reply and thank you for taking the time out.

Take Care,
K.

[pbj11]

Kizeron,

Sorry for the delay -- having issues here too. Squamous cell cancer lends itself to bleeding so that could have an effect on the hgb.

Right now, for excellent resource help, there is a Doctor online who is a lung cancer specialist. He answers questions from regular people like us. Please to to http://www.onctalk.com/bbPress/ and register to ask Dr. West some of your questions about the PET scans. As I've said before, he is the real deal -- unbelievable in this day and age that a doctor is so "handy" for people like you and I.

My husband also had incredible sweats/chills/etc. before diagnosis. That is one symptom of lung cancer. The more the cancer grows, the more weight you lose and the more fatigued you become. Chemo can turn a lot of that around.

My best to you and I'll check back as soon as I get things under control with my husband.

PBJ