SOS preparing for surgery & in lousy mood :-(

[Guest bean_si (Not Active)]

I disappear

[Ry]

Whoa, hold the phone Cat. Just want to back up a minute and ask a question. Do you know how many rads you had when you had radiation? Do you know if you had the maximum amount? If not, you need to find out what you received before you consider surgery. Heres why: If you have had the maximum amount the area will not heal that was radiated. Did the radiation oncologist say anything about what his specific concerns were?

When John was going through radiation and the tumors were shrinking they had to stop before he had too many rads to evaluate him for surgery. When they knew it wasn't possible, they continued with the radiation.

I am glad surgery is an option for you. This is good news. Just check into what they mean by "higher technical difficulties".

Rochelle

[stand4hope]

Cat,

I'm afraid I can't offer any advice, but others will. We haven't been involved with any surgery. Take lots of deep breaths, though, and relax your shoulders - you will feel better.

I'll be praying for you, as always.

Love,

Peggy

[Elaine]

Cat

Have you talked with a surgeon yet? Please let the surgeon tell you what risks you face. He or she will know better than either of the other doctors you have spoken with.

love

elaine

[Guest bean_si (Not Active)]

Whoa, hold the phone Cat. Just want to back up a minute and ask a question. Do you know how many rads you had when you had radiation? Do you know if you had the maximum amount? If not, you need to find out what you received before you consider surgery. Heres why: If you have had the maximum amount the area will not heal that was radiated. Did the radiation oncologist say anything about what his specific concerns were?

When John was going through radiation and the tumors were shrinking they had to stop before he had too many rads to evaluate him for surgery. When they knew it wasn't possible, they continued with the radiation.

I am glad surgery is an option for you. This is good news. Just check into what they mean by "higher technical difficulties".

Rochelle

How many rads? They never discussed that with me. From what I overheard I was getting the maximum as they were trying to cure SC which is not amenable to surgery.

When I mentioned possible surgery to Radiologist Oncologist, he looked bewildered and said that they could do not surgery know --- something to do with all that had been done to my chest.

The oncologist insisted they could. When I said I wasn't sure what the RAD guy meant it about it not being able to be done, he whisked it away, saying that only meant it would be a more tehnnical (difficult) surgery. I kept trying to remind him of my age (58) my previous stroke, stomach problems, rectal tumor, rare brain problems in 30s.

If the surgery will Work, I want it. But my therapist said in interviewing the surgeon, I must recall that a surgeon cuts and is speaking out of that position. There is so little doctors to choose from them.

Didn't anybody get tumor markers" They say they can' tell know if I have cancer. Wouldn't a blood tumor tests given an indication and not be risk as opening my lung.

[Elaine]

Cat

Not sure what your therapist meant. I wouldnt trust anything your onc said. Also if it's NSCLC why do they want to do WBR? I still say maybe a surgeon would be good to talk to, making sure he knows EXACTLY what was done to your lungs/chest area.

As for that blood test that sometims shows cancer activity. They should be doing it, I think, but also know it's not always accurate with lc. False negatives are possible.

elaine

[Ry]

Cat~

I do not know the exact number of rads they consider to be the maximum. Can only tell you what they told us. John's radiation oncologist got a bewildered look too when we mentioned surgery. No one had communicated to him that we wanted a second opinion on surgery and luckily we caught him ourselves before he got too many rads. He stopped the radiation, we went for the opinion (no) and then he re-started radiation.

I think Elaine's suggestion of talking to the surgeon is good, make sure you tell him about your concerns.

Rochelle

[Guest bean_si (Not Active)]

I hate to be really stupid. But this is news to me. They never mentioned RADS or that they were important or that they had to count them. (I am getting sick feeling in stomach - did their treatment preclude this surgery) I guess they decided since I could never have surgery, I didn't need to know.

What does RADS have to do with surgery? Isn't surgery just opening, etc. What does radiation have to with it (other than making the tissue too damaged to tell whether the cancer begins and ends)

help please

[Elaine]

Cat

I am assuming they are going to do surgery to remove a part of your lung--not just to look at you?? Why else would they do surgery, if not to remove the lung??? If there have been too many rads, then the lung won't heal and they can't take it out without major problems.

That's what I assumed they would do surgery for: take out the part of lung to help assure no reoccurance.

If not, then they will just monitor to see if anything grows or give more chemo as a defense against possible reoccurance.

With your crazy onc, it's hard to tell....sort of laughing..

elaine

[Guest bean_si (Not Active)]

Fudge, I knew nothing about this rad causing the chest to have trouble healing after surgery. I actually had an hour of hope, thinking that despite all the mistakes that have happened, there was a chance. stupid stupid stupid me. stupid stupid stupid I will never trust anyone again. Huh! like I'm gonna live long enough to have the chance to trust.

[Hebbie]

(((((Cat)))))))

Don't throw in the towel just yet -- make a call to the surgeon you spoke with if you don't have an upcoming appt. and ask again about the radiation issue. OR, call your radiation oncologist and tell him that you are scheduled for surgery and you want a consultation set up between himself and the surgeon. I think that is your best bet -- have them sit on a conference call together and go over your records. I think it is so important that your medical team works TOGETHER for treatment. That is how you get the BEST treatment, not disjointed, pieces of treatment! And you deserve the BEST!

[Elaine]

Cat

Hebbie is right. None of us has the needed information about your case. We, including you, are only speculating. Your onc doesn't seem to be a very good communicator, so pls find someone you can talk to.

Pls don't give up on surgery. We just want you to find out all the details, I guess was what we were saying.

elaine

[Larry]

Well CAT you actually have me tongued tied ....... I think your friend's are adviceing you properly....

[Ry]

Yes, listen to Hebbie. You don't know until all the doctors get together what the concerns are etc. Don't panic. I am hoping Karen335 will chime in on this thread as I believe radiation ruined her chances for surgery and maybe she can explain it better than I am.

I don't know exactly what radiation does to the area to make it not heal properly, but I'm sure you can search it on the net or John or Rich will chime in here with a link.

Calm down Cat, didn't mean to scare you (and quit deleting your posts people are gonna come in here and wonder what the original post was).

Rochelle

[Andrea]

what is "I disappear"??????

[glo]

Yep -- see, here we are wondering what your original post was.

(I get that you're scheduled/tentatively scheduled or something for surgery, but with added info. you're now worried that you can't have it.)

Whatever the case, Cat, I think Hebbie gave good advice to try your best to get all the doctors talking together so you're sure of what the situation is.

Wishing you the very best with whatever treatment you get, and please don't give up on any options -- just proceed with caution. Boy, do I know how hard getting straight answers and being sure the doctors collaborate is! You just get a snippet here and a piece there.

HUGS AND BEST WISHES, CAT!

Gloria

[Nancy B]

Cat,

Lots of good advice here. All I can offer are lots of prayers that everything works out for you. As far as the cancer markers, my CEA right before my surgery was 1.1. Anything under 5.0 is considered normal and my cancer was still in there. I don't understand the tumor marker (cancer marker) thing.

Take care of yourself and I will be praying and thinking about you.

Love and hugs,

Nancy

[chloesmom]

I'm thinking that this tumor marker thing varies because types of tumors vary. The way I understand it is that if your tumor expresses whatever gets measured by a tumor marker test, then there is a valid measurement, whether it's 0 or 5 or whatever. But if you have a type of tumor that doesn't express whatever that all measures, then it doesn't matter if your test comes up fine or not.

For instance, if you were to have a CEA before surgery and it was really high, then you had the tumor removed and your CEA was within normal range, then any new higher CEA reading would indicate a problem.

But, if you had a normal CEA test before surgery, and surgery removes a cancerous tumor, obviously that tumor didn't give off the indicators that a CEA measures.

In my case, I just had a normal CEA, but I didn't have one before surgery, so all that really says is that I don't have a tumor that gives off what a CEA test measures, I guess. Or, I choose to look at it as part of the sum of all the tests I regularly get and most recently, they've been good news, so I'm just leaving it alone.

Does this make any sense?

[Andrea]

Not quite sure what the post was about, I gather it was about possiblity of surgery. Just to chime in on the CEA, that does make sense to me

In my mom's situation, her CEA at diagnosis was 3.3 and it gradually decreased with chemo and after surgery went down to like 0.9 which is normal. Now they keep monitoring it every couple of months.

Her surgery was March, I guess they did scan for radiation in May as a positioning tool (not diagnostic). And she has not been scanned since, she will be scanned in August. If her CEA had gone up, the scan would be sooner.

[Jana_W]

Hi Cat

I don't really have any information to help you with, sorry Cat, but I agree with what Hebbie wrote and others suggested in that you NEED to have all the information and make sure that they have explained it to you sufficiently, and not just given you bits and pieces of information. This sounds like it is all getting very confusing (I know that I am definitely confused) and it isn't fair on you.

It sounds fabulous to me that they are thinking of you for surgery and you have every right to be excited about that.

Cat, I am thinking of you and really hoping this gets sorted out soon.

As always, sending you a zillion positive hugs and thoughts and smiles and especially plenty of calm vibes.

Jana

xxx

[Guest bean_si (Not Active)]

Reference deleted post.

Lately, getting specific information from any of my doctors is like pulling teeth. Perhaps this has something to do with the fear that I'm going to sue because of the wrong diagnosis and subsequent incorrect treatment of my cancer. I don't know. But it is frustrating.

My chemo oncologist raised my hopes by saying that I might be qualified for surgery which he felt would cure me. My radiation oncologist responded to this information saying I might not be able to have surgery because of the effects of the radiation. My chemo oncologist responded to this statement by saying that yes, because of the radiation, the surgery would be more difficult technically.

Yep, lately all the information (?) I'm receiving from these guys has me running in circles. It is confusing and it has me physically and emotionally exhausted. How do you sort it out. Cripes, I went to my primary to discuss this and he starts telling me rather pontifically that the mis-diagnose is nobody's fault (it's his hospital too) and then starts sidestepping my questions. Oh, by the way, my primary has opted NOT to carry malpractice insurance. Here in Florida, at least in this county, every doctor I have visited (a dozen) has their office plastered with posters on how doctors are suffering because of the "rampant lawsuits" etc. It appears to be their primary focus is on this and not the best care for the patient.

Oh yeah - I was going to explain the deleted post - why I deleted my questions.

What I need is information. What I can't handle right now is vague information that is not really information. Can anybody follow what I'm trying to say? I mean, it's one thing to tell people to be careful of a purse snatcher that has been operating around the Hinkle Mall between midnight and 6 a.m. in the town of Knotsville, Ohio. That's helpful. It's another thing to tell them to be careful because there is a purse snatcher out there somewhere, especially if you are saying this in a room filled with anxious people who have already been victimized. It just seems vague information is more harmful than no information. And since, I'm also guilty of doing this, I'm going to make an effort to think three times before posting – which probably means I won't be posting much.

I'm tired. If this doesn't make sense, just ignore it, okay?

[Nancy B]

Cat,

It does make sense, go get some rest and hopefully you will feel better. Please don't feel like you have to edit your posts - just say what you feel at the time - I think we all do that. We are here for you and we need to hear from you. Take care of yourself.

Love and hugs,

Nancy

[karenl]

Cat

Hang in there!!

I think it was Hebbie who suggested a case conference - this sounds like a great idea to me - make sure YOU are present also. You are your own best advocate!!!

Not meaning to defend your doctors here, because I think they have behaved abominably, but I think one of the problems with cancer is that it is NOT black and white. My mum was having annual chest x-rays, and when the tumour was found in July 2003, they went back and had a look at the previous x-ray taken in Jan 2002, and sure enough, there is a small spot there which no-one picked up on

Now, when she had her PET scan, they said there were hot spots in the mediastinal lymph and (possibly) a rib. Subsequent bone scan - radiologist said he did NOT think the rib was a met. Case conference, the consensus was that it IS a met. Confusion reigns . Because of this discrepancy, it was decided that the rib be excised and analysed. Thoracotomy and 10 day waiting period, only to have metastasis confirmed!! Several weeks recovery from surgery prior to commencing chemo.

Bottom line? I think these doctors are not really as clever as they would like us to think they are.

Wishing you all the best, Cat.

[Guest bean_si (Not Active)]

Geez. Sorry to hear about your mom. I'd be angry as heck.

I wonder if my HMO would pay for a case conference. I thought those only happened on TV because I've never heard anyone I know having one. It does sound like the sensible thing to do. Hmmm. Sensible......so why would I EXPECT the doctors to think of it!

Cat

[Hebbie]

Cat,

After my surgery, when it was determined that there had been a few positive lymph nodes in the mediastinum, my surgeon said he didn't suggest further treatment because he "got it all", but said he would defer to a panel that the hospital offered. (Which I really appreciated -- he is a fantastic surgeon, but I wanted that second opinion!) It consisted of several oncologist, both from the chemo side and radiation side. They meet every Friday and review patient's scans and then discuss them in a group forum to determine the best treatment approach. In my case, concurrent radiation and chemo were the suggested treatment, which I accepted. My radiation oncologist and medical oncologist work in seperate buidlings at the same hospital, but correspond regularly with dictated memos/letters to each other (I have seen them in the file). I have always met with them seperately, usually a day or two apart, but always try to fill each of them in on what the other has said. If there is ever any confusion/question about a suggestion from one, I always go back and clarify to make sure we are all on the same page.

I guess it goes back to the theory that we have to be our own advocates. We have to MAKE SURE that our doctors are all working together for the same cause -- our lives!