Experience's please

[Manifest]

I am trying to decide where to go now and thought I would ask what ya'll thought. I was diagnosed with 3a or 3b NSCLC depending on which doctor we were speaking to.

I just finished my prescribed chemo (6 weeks Tax/Carbo) and have completed 21 of 37 concurrent radiation treatments so far. The treatment plan was induction so that I could possibly have surgery after completion if needed.

What is bothering I am being treated locally and feel that I have a good team, but I did go to a very high ranked teaching hospital for my second opinion. They would not really treat me due to having begun locally, but said that they would pick up treatment after the completion of this first round. (they also agreed with local treatment being a valid choice, but they would have done more tests)

So I just called them and they made appointments for me on 4/22 for a PET and MRI scan which is a full 5 1/2 weeks from chemo completion and 2 1/2 weeks from radiation completion. Since our plan is to get me to a point where I can have surgery...is this time frame too long? I am concerned that anything that may be left of the original tumor may slip back to its original haunts (assuming that it actually has left).

I could probably get appointments locally the week after my radiation completes which would be the required 3 weeks from chemo. But then I have lost the resources of the major cancer research center.

I may be making too much of the timeframe and this is what I was hoping to get others experiences.

Thanks!

[Donna G]

I had induction chemo and radiation then surgery, and my plan was chemo after also.

I had my doctors appointments at my local clinic and a hospital up in the cities. I had a lot of confidence in my Onocologists decisions for I knew he also taught at the University of Minnesota medical school.

I suppose if you are uncomfortable it is not an unreasonable amount of time. Myself I really wanted to just get it out of me!

As you see below I am over 10 years since diagnosis and still cancer free.

Best wishes , keep us posted.

DonnaG

[Patti B]

Can you get the scans done locally and then take them to the major cancer center - or do they insist on doing their own??? Just a thought.

Whatever decision you make, I wish you well.

[jaminkw]

If the hospital where you got your second opinion is a very high ranked teaching hospital one would expect they would give you appointments within a safe timeframe. I would call back and tell whomever made the appointments that you are nervous about the timeframe and would like to speak to someone on the oncologist's team to get reassurance. If it would be helpful to get the scans locally and take them with you, ask the teaching hospital that as well. I took scans from a diagnostic clinic to MD Anderson Cancer Center and was going to get my followup CT/PET there as well. I changed my mind but until then it was acceptable to my oncologist at MDACC.

The decisions we have to make in the course of this battle have proven to be one of the most difficult things for me. Good luck.

[snappy]

Hi Manifest; I have read your posts and I want to point something out that I read on this forum about radiation and then surgury.

I read in a post about not being able to have surgery after you have more than 22 radiation treatments. After I saw that I asked the question myself and it was in this topic where I asked.

http://tinyurl.com/26lj7x

Just in case my link doesn't work, I had asked:

Feb 25th, 2008

". . . . I read here in some topic where surgery cannot be done after a certain number of radiation treatments. I think it was 22. Anyone know about this. Surgery was a maybe depending on treatments. I thought they were not going to check him again for 6 weeks and that would be more than 22.. . . ."

This reply from Ry on same date.

"If someone has the maximum number of rads or what they call "curative" radiation - surgery is not possible as the area will not heal. When John was doing radiation they stopped so we could get a surgical consult (no) and then started again. We have had members lose their chance at surgery due to too much radiation so make sure they know you are getting a surgical opinion."

Manifest; I am not wanting to alarm you and believe me, I know very little about cancer treatments. I think less everyday. My husband was also told possible surgery after radiation treatments. His schedule is 5 times per week for 6 weeks. We have had so many other things go wrong that we have not gotten an answer to this question yet from the doctors. Tomorrow will be his 14th radiation treatment.

I would hate to see someone lose the opportunity for the surgery just because they had too many tretments, and didn't know it.

Best of luck to you.

[carolhg]

I had 6 weeks of daily radiation and weekly chemo, caboplatinum/taxol. I was told that the radiation dose was low and so was the chemo, because the intent was for me to have surgery which I did do and surgery was followed by adjuvant chem at a much stronger dose. My surgery was in July, 2005. My scans have been clean since. Hope this helps. Carol

[Manifest]

I appreciate all the replies. I believe I am a bit clearer on some things than I was before. At least Carol's treatment aligned with mine and her retests are in line with what the teaching hospital has set.

Snappy...I had to make the decision early and it was a tough one. The two terms they threw out as far as radiation and chemo were "curative and induction" and as Carol said, my understanding is that an induction plan keeps dosages to a level where surgery would be possible if circumstances warrant.

The hard part of that decision is that they told me that the radiation is a one time treatment regardless of whether curative or induction

As Jaminkw said

The decisions we have to make in the course of this battle have proven to be one of the most difficult things for me. Good luck.

[kathytoma]

I know all people are different but my husband had 6 chemos and 37 radiation treatments, began Sept. 2006 and ended the first week of November 2006. They were trying to make him a surgical cand. Stg. 3b with lymph nodes involved.

Our surgeon got him in surgery on the Monday after Thanksgiving (2006), he said the sooner the better and that was after we had gotten 2 other opinions, so it was a go. It all happened so fast and our onc. was not involved in this decision, he wanted us to wait until late January 2007. All 3 surgeons said no way, since they do this everyday. It makes the surgery harder and more complicated the longer you wait after treatment, so we were told.

We were ned until August 2007, when he had a pleural effusion and the cancer is back. We are fighting everyday of our lives with this demon, and have been told all the stats, but God is the only one who knows when your journey is over. We were told in January 2008 that we have maybe 6 more months but we are kicking this demon. Joe is on Tarceva now and we will see how that is doing in April.

Take care and God Bless-Kathy

[snappy]

Manifest; Thanks so much for replying back. What you say makes sense. I had no idea about those references to Radiation. I will check it out.

We will find out but with all the problems my husband has had seems the radiation treatments must be pretty aggressive for him. Not the right word but don't really know how to refer to this stuff. I am just not getting a good handle on this cancer stuff. Man be just too much of it to learn. It is a project just keeping all the medicines straight. I really appreciate this input.

My husband feels they may have reduced his treatments this week. Have not yet asked. May find out today.

Thanks again and Best of luck to you.

[cat127]

My sister had 15 weeks of carbo/taxol and 37 days of radiation with "curative intent". She completed both the second week of October and her surgeon operated to attempt to remove the lung lobe on 22 January (unsuccessful but having nothing to do with the fact that she received radiation doses that pushed to the max limit the field would allow). I think she probably received about 66 Gy of radiation and I believe 68-72 Gy is considered about maximum for the lung + nodes (but my coworker who can confirm that for me isn't in the office right now).

So I think it is an overstatement to say "if you have radiation with curative intent you can not have surgery". Also an overstatement to say "surgery must be performed as soon as possible". Though clearly it should be sooner rather than later.

My sister's doctors would not do a PET until 2 months had passed after radiation, due to the increased likelihood of false positives on the PET that are due to the radiation and not to cancer. Her surgeon would also not do surgery until he had a PET and could feel relatively confident that nothing new had popped up and that she was in fact 3b. Though if more than 2 months had passed since the PET, he told me he would redo the PET before going ahead with surgery. Again, the key being that he wanted as much assurance as he could get that (1) her nodes were sterilized and (2) no new sites had shown up.

Just food for thought, and my way of saying that you will find lots of differing experiences on this board, as well as among the medical community. Your best bet is to talk with your team about the timing of things if they concern you. Based on my sister's experiences, they don't look like they are waiting too long to scan, based on hers, they are scanning sooner than her drs would have recommended, at least based on the PET and radiation treatment. Talk to your drs, they can help calm your worries. Though I do understand sometimes trying to not worry is like trying to not let the sun come up.

(also, any decisions would not be made on X NUMBER of radiation treatments, it is based on the DOSE of radiation, often presented as I did above, as Grey's or Gy. Different parts of the body can tolerate a maximum amount of radiation to the field, and the numbers differ dependent on the part of the body). Once upon a time in my life, I worked at a radiation research institute, but I try and block that all out. ha ha ha

[snappy]

Thanks Cat for the information. My husband had to see the Oncologists today and they did discuss this. Dr explained how it was okay to go beyond the 22 treatments. It is so difficult when there are so many variables to a disease. People and methods are both different. The cancer has too much to learn to try to understand it for me. I think I was reading some of your posts recently.

[Judy-OK]

The timeframe question comes up time and again was we battle this beast. My understanding both times was that the radiation continues to work for several weeks after the last treatment is received. Possibly they want it to shrink the tumor as much as possible before the perform anything else.

[cat127]

Hey snappy - glad your husband talked with his dr. I know my sister and her husband, and me too, always feel better when we chat with her dr. I may go in with some definitive ideas, but I'm plenty open to hearing his experiences and takes on things. I like that he too is open to hearing my take. In the end, it is quite true that medicine is an art, not a science. Some things are open to interpretation and different drs have different takes on that interpretation. This site, and especially Dr. West's onctalk site, are great for figuring out what the standards are and if what you are being told is similar to what others are being told. Such great resources!

Good luck and keep us updated!

[snappy]

Judy; Hope you are doing okay with your treatment.

Cat; Thanks for the info.

This has been the MOST confusing disease I have yet to try to get a handle on. With all the variables involved I just cannot get it. It is sad that at a time when emotions already run high just having cancer, that the decisions to be made are so complex to understand properly.

It was 5 or 6 weeks ago that I heard things would get better, as the beginning is overwhelming. Other than maybe not quite overwhelming, it has not got a lot better. It was worded sort like getting into a routine at least and knowing what to expect. Each week has been something new to deal with and/or learn.

I do not even know how to deal with this. I just feel lost most the time. I just cannot imagine how you all got a handle on this to know what you discuss here. I admire the fact that many of you stay on and continue to help others.

[jaminkw]

Mary: It does get better but for me it's been a very slow process. I can think of at least four visits to the doctor since my diagnosis that I came out with really hard stuff to process. I credit that to the fact that I need to get less than positive info a little at a time and our healthcare professionals are sometimes sensitive to that. Consequently, my doctor tends to give the info as I ask or she perceives from my responses that I am ready. So little by little I've learned about my particular situation and it's an upheaval each time dealing with the new info.

Hang in there. Don't try to "get it" all at once. Pretty soon you get all you need to know at the moment. I'm not counting on the even keels lasting too long but as long as it gives me time to digest it, I recover. Try to relax just a little and let the site support you between doctor visits. That's what I do. Hope it works for you.

Keeping you and your husband in my thoughts.

Judy in Key West

[jaminkw]

I want to apologize to you Manifest because my post was to Mary. But I started reading the posts and they looked like they shifted subjects a couple of times. Anyone out there, am I losing it?

Judy in Key West

[snappy]

I didn't mean to get off subject. I guess I didn't realize it was.

The appointment that my husband had on 14th was a regular scheduled appointment. When asking about surgery the Dr said that is why he wanted my husband to see a surgeon. They set up an appointment.

As of today my husband now has an appointment with a Surgeon March 31st. However, that is his last Chemo Day and not sure how this will work out. Whoever scheduled the appointment must have missed that.

My heart goes out to any of you that I read that are going thru this, whether patient or caregiver. Thanks for the help.

[jaminkw]

O.k. Snappy, you are Mary. I get that now and no, you didn't go off subject. I was just confused that I had responded to you and when I went back to the top of the page to reread which I often do to refresh where the thread started, there is a post from Manifest to whom I also responses. It seems to me now that one led into the other and it threw me for a minute. One of the things I regret the most about this disease is how mentally fuddled I am so much of the time!

Judy in Key West

[snappy]

"One of the things I regret the most about this disease is how mentally fuddled I am so much of the time!

Judy in Key West

Judy;

I am finding out that the person with the cancer is not the only one that feels like you described.

My husband might be a little more confused at time due to the meds and lack of sleep but I am running real close. This is an awful lot of variable information to be taking in and for such a critical issue as 'someone's life'.

My 37 year old son has been here from out of State, and trying to help for couple weeks. He has more energy for this than us but still gets into the confusion mode at times.

We are all finding such differences in stories. We know where there were differences in ways of doing surgery and also in time frame.

All I can figure for a lot of this, is that you have to jump in 'with Faith' at some point.

[jaminkw]

Mary: Remember I have chemo brain--is Murphy's Law the one that says whatever can go wrong goes wrong? If so, that's how Bill's profile reads. I feel like mine went like that for awhile but not as extreme as Bill's. When I started to focus on a single issue, I started to be able to focus a little more but Bill has so much going on. It must be really really hard. As far as that leap of faith, I banged headlong into it when I got to the Avastin maintenance and haven't resolved it in my head yet. I'm on it but don't know for how long. Aren't we all always waiting for some test or another. Mine is a CT/PET on April 1.

Have a great day.

Judy in Key West