confused

[ejpritz]

Hi guys, update on my mother. The firts oncologist, whom I was very unconfortable with said we basically had no options, except Chemo, which would prolong her life "by months". Well right now my mother is in the hospital with a collapsed lung. The oncologist made this diagnosis without results from a PET Scan and with the first needle biopsy results which were inconclusive. LAst night an oncologist form Dana Farber went to see her in the hospital and told her "I can cure you". He is starting Chemo very soon and he said once the tumors shrink he will operate and remove them. He said that though it is in both lungs it is not "untreatable/incurrable", that Chemo and surgery can have very good results. Of course this is great news to hear, but I can't stop wondering why the first oncologist said we had no options and made this prognosis without all the test results. Is it because she works directly for the HMO? Has any one else been told such conflicting things? I don't know how a Dr. can tell someone that there is no hope and then one can say there is so much.

[norme]

I don't know about either of your mom's onc. The first one is prob going on statistics and the second one is going on God knows what. It sounds like your mom is stage IV. It can happen that your mom could go into remission and cure. I would think remission would be more like it when one is stage IV. She has a very big battle to fight for she has it in both lungs. He surely can't take out both lungs. He is hoping that the chemo will shrink those tumors and hopefully it will but how he is going to do surgery when both lungs are affective I sure don't know. I never knew anyone who had it in both lungs and had surgery in both lungs.

All I can say is start a folder on your mom and get copies of all her scans and keep them handy when you take her to the drs. You need at all times to be completely on top of her treatments and scans. Read the scans carefully and if you have any questions make sure you bring them up with the onc.

Will be praying that things work out well for her. God Bless.

[Don Wood]

I agree with Norme that both the oncs sound like bad news. The first is far too pessimistic and should be fired. The second is far too optimistic and should be watched carefully. Good luck. Don

[Debaroo]

I can definatly understand why you are confused.

Like Norme, I too have only found that research shows that when the cancer is in both lungs, surgery is not possible. Is it that he will only do surgery on one lung? But what would, really, be the sense in that?

I agree with Don and Norme, while it is imperative to have an oncologist with a 'can do' attitude, I believe that there must be a balance between having hope and being willing to try clinical trials-and even change nutrition...but there must be a balance between being determined to fight the disease and going too far.

I would get a third opinion. I know that it is alot to deal with, but if you can do a bit of research youself-so that you know what some of the determining factors regarding surgery are.

Let us know how things go, and if the second doctor was more specific in what his master plan is. Take care, Deb

[bphyllis]

Hi, I have two tumors in my right lung and one tumor in my left lung that are all right now approximately 1.2 cm in size. I am in excellent health and I have had three oncologist (one is married to an excellent pulmonary surgeon) who have told me that surgery is not an option. They said that if it was one lung they could do it. If they remove all of that tissue from both lungs, you would not be able to breath at all well and then they said what about quality of life. I am doing chemo now (experimental) and hoping for remission. They said there is no cure just control. I have applied for radiofrequency ablation with chemo, but won't know anything on that til next month. Good Luck. It does sound like you need another opinion.

[Carleen]

Hi ejpritz,

I don't have much experience with surgery, as it was never an option for my husband. However, I have seen some things in articles I've read.

I will be praying for surgery as an option for your mother. I suggest that you not get your hopes too high, as that is something that is a rarity. However, it sounds as if it all depends on the location of the tumors and the proliferation. It is possible to remove on lung and have a resection on the other. However, that would severly limit the lung capacity and would probably mean being on oxygen for life. If both lungs have tumors in limited areas, it is also possible for a resection on both lungs. That would mean removing only portions of each lung leaving enough behind to live actively. This however, from what I've read is very experimental and rare. It is also, not always successful as often when the cancer is in both lungs, there is a high probability that the cancer can reoccur and spread to other areas and just removing the existing tumors does not always remove the microscopic particles that are floating freely through her body.

Like I said, I am not completely up on this topic, but these are things I've heard. I will pray hard for the best possible treatment and curability for your sweet mother.

Carleen

[Guest]

So, my mother has two tumors. One medium (4.5 cm) in her left lung and a very small one in her left. i am not a doctor, but it does make sense to me that he can shrink both tumors and then cut them out of the lungs....AND this guy is from dana farber, which for those who dont't know is by far one of the best cancer institutions in the world.

by the way, we are sisters, we're talking about the same mother

[bobmc]

Hello Sisters;

First off your mom is very lucky to have the two of you as advocates for her health!!! ; You have fortunately just found out how important 2nd opinions are and how important it is to be treated at a cancer treatment facility. Your very lucky to be going to Dana Farber.

It's the real world of medicine and it's sad to say, but what you experienced from the first Dr. happens all too much. The longer you stay with us the more you'll hear it. Your mom, most of all needs hope. Hope that she can SURVIVE. I'm very glad that she is now getting it. Please tell her that she is not alone, and many are going through what she is and SURVIVING. Also that many on the boards will be praying for her.

did'nt mean to get on a soap box but get angry when I hear of people going through that! You keep doing what your doing!!

God bless and I'll be keepin your mom in my prayers.

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's of the brain and spine taken 12/17- anxiously awaiting results

" absolutely insist on enjoying life today!"

[ejpritz]

Well, thanks for the input everyone. The next piece of info is that Monday the Dana Farber Dr. is starting radiation, every monday through Friday for 6 weeks. Staring a few days before Christmas. I was wondering what to expect from this. I know Chemo can make people extremely ill, but how do people do with radiation in general? Will she feel sick on Christmas? Also, she is insisting that she can take herself to the radiation appintments. She lives within 20 minutes driving time of Dana Farber where the radiation will take place. Will she be able to drive herself home? She has been told she will,, and she told me that the things she can od on her own, she wanst to do on her own, and that she knows she will need people to drive her to and form Chemo, so she would like to trake advantage of doing as much by herself as possible. Is this normally the case? I don't want to have her driving if its unsafe, but I also don't want to make her feel completely dependent on others at this point.

And as far as I understand this, the radiation is not targeting a tumor, but a blood vessell. The new Oncologist said it is a little too close to a blood vessel and he wanst to prevent the tumor and it form connecting and the cancer getting into the blood. He said it may reduce the tumor size a little, but thats not what he is expecting. Does this seem to make sense anyone? It sounds like an aggressive radiation course, but again, I am new to this.

And thanks guys for your input on the surgery. We have a lot of faith here, especialliy in this particular hospital. But we are still getting a third opinion, next Tuesday, at a Thorasic Oncology Clinic at Mass General which is supposed to be great.

[Carleen]

My Husband had radiation every day for 13 days.

The side effects were not too bad. He was a little exhausted, but still managed to work full time and function as normal.

Some side effects also depend on where the radiation is being targeted.

Keith's was on the neck. Others who have had chest radiation have experienced some esophogitis which can make swallowing difficult. It is also not uncommon to experience acid reflux as a result of radiation close to the esophagus and stomach area.

Radiation alone from our experience was not bad. For 5 of the days of radiation he received chemo at the same time. That drastically increased the fatigue he felt.

Each person is different. Make sure to do things proactively to minimize possible side effects. Radiation can cause dehydration. Dehydration can have some nasty consequences for cancer patients including extreme exhaustion. Make sure mom drinks lots of water.

I wish your mother the best, and will include her and you sisters in my prayers.

Carleen

[ejpritz]

Thaks, I didn't even know it causes dehydration. She is not one to drink water , but that will have to change. Me and my sister can handle forcing it down. SO it sounds like she should eb able to take herself in, so we will not argue about that unless it becomes an issue later down the rode. I can only imagine that it must feel horrible to have to rely on people for rides and so forth every where, so when she can do something alone, is it best we let her if she says she wanst to? Or how do I know if she is just trying not to burden people?

[luvmydog2]

My story is about the same as what Carleen posted. I also drove myself to radiation. I felt like driving myself to Chemo but my wife would not hear of it. I am a bit confused on the shrinking part tho. That was the purpose of my treatment and it worked real well. I started at 7.5 cm but it had shrunk to a microscopic trace by time chemo/radiation was over. Hope this helps.

Bruce

[MO_Sugar]

I drove myself to radiation every week day for 6 weeks (65 miles each way), for 3 weeks of PCI treatments (again 65 miles each way) and to chemo. I didn't have to many problems other than those already mentioned. I would suggest someone at least go with your Mom the first time or two to see how she does.

Prayers and good wishes.

God Bless,

MO

[Guest]

Today our mother is getting a lymph node biopsy...is this so they can determine whether or not the cancer has spread to the lymph nodes??? and if it has, what is the course of treatment there?

Again, THANK YOU

[norme]

My husband Buddy had a very hard time with radiation. It burnt his esophagitis and he had the acid reflex really bad. He lost a large amount of weight because he could not eat for a good month. As I remember, he had 25 treatments the first time.

when they operated on him he had 5 out of 7 lymph nodes with a very very small amt of cancer in the 5. those ended up going to his brain, liver, and colon so far. I sure hope your moms comes back showing no signs. How many are they checking?

I would go with your mom the first couple times also. It seems to me they would not give my husband either radiation or chemo without a driver. I can't remember which one.

[kimblanchard]

I drove myself for 31 radiation treatments . I t was a 70 mi round trip, partly in Kansas City and took about 45 minutes each way. I had no problem driving but normally had someone riding with me just for company.