Pulmonary Function and RPLND

[mercyriver]

I was just reading a post off of TC-Net digest and noticed someone had their RPLND postponed because of the results of the pulmonary function test.

Is it standard that they do another pulmonary function test prior to the RPLND?

They did one for my husband prior to his 3xBEP and never did another.

Just curious. We have an appointment with the surgeon next week.

Becki

[Russell's Mom]

Russell's RPLND was postponed for 3 months because of Bleomycin Toxicity. The Pulmonary Function test will show a decrease in lung volume if there is a problem. I am guessing that is what they were dealing with in regard to your question. The risk of giving Russell oxygen during surgery was higher than the risk of the cancer post chemo....therefore the wait. The goal is to stop the fibrosis that is occurring. Also with the BT, a person can no long have the high dose of oxygen required for the surgery..they want the body as strong as possible. Oxygen in high doses becomes toxic to a person with BT. (Russell's 7 1/2 hour surgery was done on room air level oxygen...I am forever amazed at his surgeons!!!) Hope this helps, Sharon

[sldl1106]

Hi Becki -

Yes, I remember Rob having them done each round the Monday chemo started, and then again about a week before the surgery. His lung function is a lot better now; he was pretty close to Bleo toxicity because his function was down by 25%, and so they ended up dropping the last Bleo shot. He was cleared for surgery, but it played havoc post-RPLND. He puffed up with surgical fluid and there was a great concern about his lungs filling with that fluid - I suppose they were more susceptable then.

[mercyriver]

This is exactly what I was concerned about....they did the baseline Plumonary Function Test prior to chemo. The test showed small airways disease, which everyone waved off because he was to young to have anything wrong with his lungs. I contacted National Jewish Hospital (the top respitory hospital in the country) and they said it could be something as simple as asthma. My husband just wasved it off as well. Even though he coughs when he plays sports and when he gets a cold it goes straight to his lungs and sticks around....forever......

Fast forward to last CT, it showed he had "dependant mild bibasilar atelectasis", which I looked up and is basically a mild collaps of the bottoms of his lungs.

YET, no one cares, no one looks at it and goes, hmmm, maybe we need to double check this. He has not had one follow up to recheck his lung....nothing! Yet Satcy you are saying Rob had one before the start of each round.....what is wrong with our oncologist???

Hopefully the Urologist will be smart enough to check his lung function prior to the surgery.

All I can say is Grrrr...I am frustrated.

Becki

[Russell's Mom]

To me it sounds different than the Bleomycin Toxicity. If not for anything, stay on it until you have understand and peace of mind. The toxicity does occur in the bases, but it shows as patches of density with strands of fibrosis. If it were me, I would ask to see a Pulmonologist. Our oncologists sort of passed it off. I think that Russell was sick from it for a long time and that they were thinking I was just being an overreactive mom. Nothing was done until he was symptomatic and now has 30% lung volume loss. It is so amazing to me that doctors have given up their oath...their integrity and their ability to speak for what they know and should be practicing for the sake of institutions and policy. sorry for the soap box, but there is no reason for you to be lost in the the confusion. If it is not a firm diagnosis, so what! Your mind is just as important. Let me know if you have more questions..will see what I can find for you. Hang on, Sharon
PS Bleomycin toxicity starts with a hypotensive crisis and fever.

[Manny]

I have very mild asthma in my small airways. I spoke to my doctors and they said that should not prevent me from having RPLND surgery later this month.

[Russell's Mom]

Asthma can be watched and treated...it is the Bleomycin Toxicity that is the concern. It is good for you to be watching and speaking to your concerns however. Hang in there! Sharon

[sldl1106]

Becki -

I know you know this, but SPEAK UP. When Rob was in Sloan, his breath was short and labored. I was in his room 12 hours a day for the first two weeks, and 24 hours a day for the last week. The doctors would come in, say hi and all that, ask Rob if he was short of breath and every day he would say "No." He could literally barely get the word out. I would say yes. They'd ask him again, he'd say, "No," and they would leave. Finally, I had to stand up (all aquiver, I might add) to Dr. Sheinfeld and say, YES HE IS, DON'T LISTEN TO HIM. LISTEN TO ME!

And that got the ball rolling. The shortness of breath was due to the fact that the buildup of fluid the kidneys wouldn't let out was starting to suffocate his lungs. I will never be sorry I was thought of, for the moment, as a panicky nuisance wife.

[mercyriver]

Manny and Sharon,

Thank you for the information. Manny, it is good to know that they wouldn't delay an RPLND for asthma. My husband has a dry hacking cough right now, I don't think it will delay anything, but he has a pre-RPLND check-up on Tuesday, so if anything is a concern, we will find out then!

And Sharon, I wasn't so much worried about Bleo Toxicity, just damage to his lungs....I'll just have to trust the Dr's.

And Stacy, I promise I will speak up for him. It is much easier for me to speak up for him when he can't give me a scowl and lecture about it later!!

Becki

[Russell's Mom]

Becki, Please be careful! Dry cough is one of the symptoms of BT. You just want to know for certain that that is not what you are dealing with. If it is BT it is as, if not more concerning than the cancer. It needs to be treated if it is BT. I don't mean to create an alarm, but everyone who has had Bleomycin should be aware of this possibility. The toxicity has on a rare occasion return in later years and it creates damage and can be fatal. Many of the care providers are not aware of Bleomin Toxicity. Even one on the anesthesiologists at my work had never heard of it. We talked for a while and he shared a document that he read a couple of days later. (He is one who wants to know and takes good care of his patients) The document shared that most care providers have not been educated about Bleomycin Toxicity because until recently, most dealing with cancer did not survive their disease. The concerns with Oxygen post treatment were not a concern. They are giving Bleo to babies. I am on a band wagon to educate as I go so that hopefully these young people will not get tripped up by a secondary "avoidable" threatening concern. Keep in touch, Sharon

[mercyriver]

Thanks Sharon

I did some reading yesterday about Bleomycin Toxicity, he could easily have it. He had reactions to Bleo every time he got it. But we controled it with Benadryl and Tylenol. And the reaction only lasted about 4-5 hours each time. What showed up on his last CT could very easily be some fibrosis. But, I am not a Dr, so I won't make guesses!

Thankfully I do know that his Urologist is very aware of the complications that anastesia and past Bleo use can cause. He talked to us about it last year before my husband started chemo, when he was talking about the complications of post chemo RPLND's.

I suppose it is one of those things I am just going to have to stay on top of....and try not to worry about, at the same time.

We have our pre surgery checkup this afternoon, so I should have many more answers to my questions this afternoon.

Becki

[Russell's Mom]

Are they watching the lungs with Pulmonary Function tests? These are easy to do test that watch the capacity of the lungs. Decreases in lung volume will help with the diagnosis and as well, they can see if there is increasing damage that might be happening. Russell was put onto high dose steroids in order to stop the reaction. If the lungs are fibrosing, they should be aware of it and medications givene to try to stop it. I'm glad to hear that the doctor is aware. It should always and forever be a conversation if surgery or supplemental oxygen is being considered. Good luck, Sharon

[Fed]

Becki,
Just dropping a quick line to wish your husband much success with today's procedure. Let us know how things work out.

[DAWN82]

Becki! sending lots of hugs!!! and hoping that everything went perfecty today! we will be waiting for results!!


Dawn

[Scott]

I'm thinking of your husband and you, Becki, and hoping everything went well today.