What now?????

[vitis]

Hi there everyone,

I am a 60yo male in New Zealand.

I used to smoke and did so for 45 years then decided in may 08 to quit which has been very successful, but in October I had a bad angina attack which resulted in having a stent placed in my heart artery .

This was fine but a month later the hospital asked me to come back for a ct scan as xrays had shown something in my right lung.

Well I've since had a lung biopsy & a pet scan which confirmed adinocarcinoma stage 1a and also indicates some activity in a lesion just below my right ear.

I've had FNA biopsy of this lesion but there was insufficient material for a result.

This is now being repeated on 22nd Jan.

The specialist has told me not to worry as the cancer is small and slow moving and they will cut off the top of my lung with the cancer and I will be fine. I am getting a bit frustrated as I want the operation to proceed asap but everything is being held up because they can't find out what the lesion is in my parotid gland.I suggested they remove the lesion anyway regardless but they seem reluctant to do this.

Am I unduly concerned?????

Vitis

[jaminkw]

Vitis, How frustrating. Is the parodit gland where the lesion below your ear is located? I don't know anything about this particular region of the body but if you want to check the doctors' decisions, I would suggest going to cancergrace.com and asking Dr West. Although he can't recommend treatment, he will give a second opinion on the standard care and treatment of your disease with no charge. It's worth the time.

The only other thing I can offer is that if you have to have cancer, you want it to be 1a. With surgery and perhaps a few follow-up chemo treatments you could be good as new. I'm sure others will be in to respond and keep us posted.

Judy in Key West

[vitis]

Thanks for that Judy, the specialist said the same thimg re 1a--perhaps I'm overly concerned but I just don't want to end up with anything worse.

Will try using the dr on this site as well.

thanks for your support.

Ted

[Bruce u]

Hi vitis

Welcome to this great site. there will be lots of members dropping by to answer your questions. I had a spot on mt left lung show up on a chest x-ray by accident. That was in February 2007. I had my upper left lung removed in September. I was staged 1b. I understand they did have to do a number of test prior to surgery. Most of my delay's were because the Thoracic surgeon was out of the country twice on vacation. I would push to have the surgery as soon as possible but also understanding there are preliminary test that have to be completed first. Please keep us updated.

[recce101]

Hi, Vitis, welcome to the group.

We patients always want things to move faster, but in your case the doctors probably have a good reason for the delay. Here's my guess (but it's only a guess, since I'm just another patient like you):

Since the lesion below your ear showed activity on the PET scan, they probably want a conclusive biopsy to confirm that it is not related to the adenocarcinoma in your lung. Uptake on a PET scan does not definitely indicate cancer — it could be inflammation or something else causing metabolic activity. If it turns out to be something like inflammation, they'll have greater confidence that your stage Ia diagnosis is correct and that removing the affected lobe of your right lung will give you a good shot at a cure (no evidence of disease for 5 consecutive years).

May I suggest that you post this same question in the forums section of cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). The site has a wealth of information, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here.

Hey — when I checked my preview I saw Judy had already suggested cancergrace.org. Well, it's a good suggestion!

Best wishes and Aloha,

Ned

[vitis]

I don't seem to be able to get through to cancergrace it seemsto be locked???---can anyone help me please.

Ted

[vitis]

Hey Ned--you are talking similar language to the specialists--are you sureyou are only a patient??? it makes a lot of sense. This site is similar to quitnet which I also used a lot when quitting smoking---awesome support.

Thanks again and Kia Ora to you.

[recce101]

It's cancergrace.ORG, not com, in case that's what you were trying. I was just on the site.

Ned

[SandraL]

Hi Vitis and welcome. Yes we all experience frustration with the time issue at the beginning with little we can do about it. In your case, I don't think a few weeks is going to make a big difference but keep telling them to hurry up anyways! And please keep us posted on how you are doing.

Sandra

[vitis]

Well I've heard from the hospital and am having the operation on the 5thFeb.It is a thoracotomy and right upper lobectomy.

The problem with my parotid gland is being dealt with separately although I had the second biopsy which hurt so very much I will refuse to have any more of those.The first result was negative which they don't want to accept which seems a bit strange to me.

I am looking forward to the lobectomy and hopefully some sort of cure, and am grateful for all the advice from some of you who have been through this, I will try to remember it all.

[recce101]

Sounds good, Vitis. "Looking forward" to a lobectomy is not the term most people would use, but you've got the right idea, since it's probably being done with curative intent.

If you're getting a full thoracotomy instead of the scope procedure, then I have 3 helpful hints for you:

1. Do any furniture rearranging you might need before you go to the hospital. I moved a recliner into our bedroom and used that for several weeks after surgery. It's much easier to get in and out of a recliner than a bed since you can eliminate most of the twisting action.

2. Move frequently used items up or down to a level somewhere between waist and shoulder height. This will allow you to be relatively self-sufficient and you wou't have to be constantly asking people to get things for you.

3. Think of your post-surgery pain medications as not only pain pills but also high-potency constipation pills. Stock up now on whatever items you've found helpful in the past — stool softeners, prunes, milk of magnesia, whatever. They tell you when using pain meds to stay ahead of the pain. Well, it's just as important to stay ahead of the constipation. You don't want a major problem with that when every little strain hurts. If you think I'm speaking from experience here, I am!

Good luck and Aloha,

Ned

[vitis]

Thankyou so much Ned this is exactly the advice I am looking for as at this stage I was assuming I would be sort of mobile and maybe able to drive a car 2weeks post operation. Maybe I'm being a little ambitious here.

Also it appears as though there are differing opinions re chemotherapy as a follow up treatment.

I think my surgeon is suggesting no radiation or chemo.

Some people on this site are quite adamant that chemo should be used.

Perhaps I should direct this to Dr West but would be interested to hear from people who have had either treatment when at stage 1a.

Ted

[ts]

Ned is so right about the constipation! That was the worst part of recovery, nothing like it. Gawd, it seems so funny now in a weird way. (We had to call a plumber afterwards!)

[vitis]

Wow I think it has been worth it just finding out about the plumbing issues ha ha--will stock up with some cleaning products, thanks again.

Ted

[Bruce u]

Hi Ted

I had a lobectomy and my upper left lobe removed. If you are having VATS than recovery time is very good. I was released from hospital on the 3rd day and flew over 900 miles home. On the 4th day I actually dropped into my place of work to say hi.

I was staged 1B and they did not recommend adjuvant chemo either. I got a 2nd opinion and pushed for it. The Oncologist finally agreed but wrote on my chart that studies did not support my decision. I had 4 rounds of Cisplatin/Vinerolbine.