Doctor/Treatment delima

[ChristinaMarie]

I am really not sure which forum to post this in, so please feel free to tell me if this is not the right spot.

We met with oncologist # 1 on Tuesday at an independent cancer center. While she was very nice, My husband really wants to go to the other cancer center here that is part of a hospital and university. The oncologist over there is very well renound and has written books on Lung cancer and well, I guess we are already attached to him. The kicker is that he is on vacation until Sept 2nd and we cannot get an appointment until Sept 9th (dont these guys know that cancer takes no breaks?!?! )

Anyway, we have a couple options. His bone biopsy is tomorrow so we would not even start treatment until next week if we went to onc #1. What would you do? Go with onc#1? Start with onc#1 then transfer to #2(they dont really prefer that incase onc #2 has a different plan of attack)? Or just hold off until September 9th? There is a "rumor" going around that onc#2 will return from vaca for a day on the 26th to see urgent patients (which my husband would be considered as) but she is not sure and told me to call her next week and see if she has more info about that.

My husband is OK with waiting until Sept. 9th, however, I am not sure I am OK with it. I am scared its going to grow even more and pop up in a new place, although I am not really sure how the monster works.

What would you do????

[SandraL]

Very tough call Christina. Given that he is comfortable waiting and where his cancer is at, I would tend to think that waiting a few weeks at this point would not be a huge issue in the grander scheme of things. Many of us waited weeks and months to get on treatment plans. Think you just need to make a decision, make sure your heart knows it was the right one and never go back and second guess it. Too much other stuff to worry about. Best wishes

Sandra

[Flyman35]

Christie I would agree with Sandra that given where he is at with his cancer that waiting a few weeks would not make a big difference in the grand scheme of things. The waiting can be excruciating but can pay off in the long run. I would say that if Mike is OK with waiting then go with what he is most comfortable with.

From the time my husband got sick until he started treatment was close to 5 months. We are now 6 months out from official diagnosis. Granted he has squamous v’s adeno but he is also a stage IV and is doing well. His tumor was 2.75inches at the start with a 1 inch tumor on the liver. He has had a couple of scans in between and has had very positive results. We go for the next scan on Sunday with results on Monday to see where we stand.

The last chemo was on 6/30 and the last radiation treatment was on 7/16 so the waiting for this next scan has me a bit on edge as well. Now it is down to just days and seeing how well he is doing it doesn’t seem so bad after all.

I’m sure you will make the right decision in the end. Once you have determined your plan of attack as Sandra said don’t go back and second guess. Just run with it.

You have my prayers for the strength to get through these coming weeks.

Denise

[recce101]

Hi, Christie. Yes, that is a tough choice, one for which there may be no "right" answer, but there are a couple more items of information that I'd want to have if I were making the decision.

1. Your husband got CT scans in April, June, and July. Your profile says the July scan "shows growth in a nodule." How much growth? Is that nodule the "less than an inch in diameter" nodule you mentioned earlier? Did anything else grow? Is the growing nodule in a critical location, like close to a major organ or blood vessel or nerve or airway? Answers to these questions would give some indication of whether delaying treatment another 2 or 3 weeks is problematic.

2. You said in the other thread that Onc #1 (at the independent center) was leaning toward Cisplatin and Gemcitabine. Was this the treatment she favored if the bone biopsy turned out positive, or negative, or either? If the bone biopsy is negative, and it's believed that lung surgery with curative intent is therefore an option, would having started the chemo adversely affect getting the surgery? This is an important question. I believe recent research shows that chemo before surgery can be helpful in some cases, especially if a tumor is close to another critical organ/vessel/nerve and needs to be shrunk so surgery can be safer. You can pursue this question with Onc #1 when you get the biopsy results.

It may be possible/advisable to start the Cisplatin and Gemcitabine with Onc #1 regardless of whether the biopsy is positive or negative, then transfer to Onc #2 (at the preferred university center) to continue the same treatment and/or get the surgery if that's indicated. Your husband could explain to Onc #1 that he would like to switch to the university center because of convenience or whatever reason, and see what she thinks of that plan. There's a good chance the two oncs are well acquainted and coordinate these kinds of issues frequently.

You could pose this question to Dr. West at cancergrace.org (which I mentioned earlier). He's WONDERFUL at laying out the pros and cons of this sort of issue. Although he can't and won't give specific advice on what to do in a particular case, the way he explains the various considerations is very helpful. Browse through some of his recent responses and you'll see what I mean. And he usually answers within 24 hours, even on weekends.

Aloha,

Ned

[ChristinaMarie]

Hi ned, here are answers to your questions:

1. He got a CT scan in April and July. According to the history on the PET it says

"CT examinations on the chest on 4/1 noted a 2.0 cm indeterminate nodule in left lower lobe as well as 7 mm pleural based nodule at left major fissure and 4 mm opacity in left lower lobe. A 1.2 cm left hilar lymph node was noted. CT on 7/11 noted no significant change in left lower lobe but developement of a new 1.0 cm nodule in left mid lung and increase in left hilar adenopathy to 1.4 x 1.8 cm and an new 1.1 cm subcarinal lymph node."

The part I bolded is the part that was biopsied showing cancer and that is the one that grew. However, the 2.0 CM also showed "prominent uptake". Its so confusing. The onc said that the tumor was "less than an inch" but according to pet he has several nodules that "lit up" ugh I gotta stop reading these things lol.

However part of the PET has me thinking....

"There is an additional lesion at the left lung base medially which also shows abnormal trace uptake with max SUV of 4.3 and another area of abnormal tracer uptake more superiorly which abuts the heart border with max suv of 5.4

if it "abuts" the heart then we really should not risk it getting bigger huh? I have no idea if that is one of the new ones or one that didnt grow or what.

Question # 2.

Onc # 1 told us that it would not impact survival if we waited til after the biopsy results to begin treatment. If it was staged down, my husband would rather do surgery if possible and avoid chemo, however I would try to convice him to still do the chemo.

I am just scared of starting with onc#1's treatment plan incase onc # 2 has something else in mind you know? But your questions now have me wondering if we can afford that luxury.

[recce101]

Christie, keep in mind that I'm just another patient. But with the additional information you gave, if I were making the decision for me, I would not want to wait until Onc #2 returns from vacation before starting a chemo program. I'd want to talk to Onc #1 about the options as soon as the bone biopsy has been evaluated, and I'd be inclined toward chemo even if the biopsy is negative and lung surgery is recommended -- chemo either before or after the surgery. But also keep in mind that I'm more pro-chemo than some people, because I've had good results from it with no significant long-term side effects up to this point. I'd still advise asking Dr. West, and you're welcome to quote any of the stuff I've said in your question.

Aloha,

Ned

[Don M]

Chirstie...I agree with Ned and you should run it all by Dr. West.

don M

[recce101]

Good, Christie, I see you've posted on GRACE. I wrote Dr. West and gave him the link to this thread in case he wants to review it. Aloha,

Ned

[Patti B]

Christie-

Yes, this is a tough call altho I agree with the others that the cancer probably isn't going to grow that much that fast - some people wait weeks to get a bronchoscopy and then chemo plan in place.

Can you go with the bone biopsy and get all the workup done and then switch to onc #2 and bring all the records?? If your husband REALLY feels more comfortable with onc #2, thats where he should be. Part of treatment is trusting your doc and having faith in him/her. Of course, best case scenario would be if onc #2 did come in from vacation that day and see your husband.

Once you make a decision, please don't be second guessing it. Use your best judgement - thats the best any of us can do along with the advice of our medical team.

Wishing you luck in making your decision - keep us posted please.

Hugs - Patti B.

[dchurchi]

Hi Christine,

I was caregiver to my husband and not the patient. However, having said that as my husband was the patient I needed to honor what he wanted. He was the one facing the disease and all its treatments. Alan was very comfortable with both his medical and radiation oncologist, and I believe because he did have trust and faith in them it help Alan in his overall battle with his cancer.

Prayers to you and your family.

[ChristinaMarie]

Thanks so much for all the suggestions everyone (and ned, thanks for referring me to Dr. West.)

Onc #2 is back from vacation and I got my husband an appointment for next thursday! Next Wednesday we are driving to Buffalo to Roswell to get an opinion there as well so we will have 3 opinions total.

All this advocating is exhausting! lol. It just so happened I called yesterday and the girl who answers the phones was on vacation so onc #2's personal secretary answered and told me he came back from vaca yesterday and was staying back. I am so glad I called!