PET scan....scared...

mmoons · 10-13-2009, 04:16 PM

Hi there-

Well, we are settled in Michigan and loving the fall weather (when it is not raining)!

I saw my new oncologist. I had pain in my right ribs, which I figured to be from the radiation. Turns out I have 3 fractured ribs. I know now that it is not uncommon for this to happen.

The x-ray showed a spot in my upper right lung. So they ordered a PET scan which shows a small dense area. My new oncologist in Michigan feels certain it is too dense and lobular to be anything but cancer. My old oncologist in Dallas says that she feels CERTAIN it is scarring from the radiation and not cancer.

My new oncologist wants a CT-guided needle biopsy this week. My old oncologist says she would not stick a needle in there...no way!

I am still on Herceptin but my new oncologist is so sure that I have a progression that she cancelled my Herceptin infusion for tomorrow.

Please...share your thoughts with me. Please share your experiences. I am so grateful!

Maureen

lkc Gumby · 10-13-2009, 04:36 PM

Hi Maureen, I am sorry you are dealing with this. Sounds like your new onc is being super cautious, as by continuing to tx you without a tissue confirmation can be abit dicey. I would encourage you to have your new onc to speak directly to your onc in Dallas. They can then discuss your case ND rationale between themselves, and Then YOU can decide which way to proceed.
If it was me, I would stay the course and watch for any changes to this area. If its it scarring it won't change .
I hope somehow this helps.
Let us know, how things go.

Faith in Him · 10-13-2009, 04:48 PM

Hi,

Is the nodule on the same side as the radiation? I have scarring from rads on my bc side.

I know how scary this all is right now. I hope it turns out to be nothing.

tricia keegan · 10-13-2009, 05:04 PM

Maureen, I have no advice or personal experience but just wanted to wish you wll and hope this is just scarring

chrisy · 10-13-2009, 05:27 PM

AARRRGH!

Sounds like you are in need of a 3rd opinion! Or at the very least, that conference call between the oncologists - and I would suggest including the radiologist as well.

You have a scan which seems, based on what you say, to be inconclusive. So you do need more information. That could either be waiting and watching OR biopsy. But you need to have more than "I'm sure it's this" (with opposite conclusions) to go on.

Here's a few more questions to add to the mix:

1. What did the radiologist report say? Are the 2 oncs basing their opinion on looking at the scan themselves, or the radiology report, or ?
2. Did the PET show this new "spot" to be metabolically active (what was the SUV?).
3. Why would you cancel the Herceptin infusion? Even if this is progression, any new treatment protocol would probably include Herceptin anyway. I would want the herceptin so I wouldn't be completely "naked" while sorting out what the scan really means.

Tough decision. You need to know what the true answer is - but it seems you do have time. Assuming the rib pain was due to the fracture, you really do not have symptoms from whatever the lung thingy is. Ask what is entailed, and what are the risks in a biopsy. Weigh that against having a follow up scan in another month - including how the uncertainty will affect you. See if you can get consensus among your team, then go with you feel is right.

Take care
Chris

RhondaH · 10-13-2009, 05:39 PM

Maureen,

I TOO am in Michigan and I would maybe seek another opinion before I start poking around. I sense you had a good relationship w/ your old onc. I am on the west side of the state and see Dr. Mark Campbell from Spectrum and I have COMPLETE confidence in him. Good luck and take care.

BonnieR · 10-13-2009, 06:10 PM

I don't have anything concrete to add. Except that it does sound as if you need a tie-breaker. I am not sure I am understanding why you would discontinue the Herceptin until another plan is developed.
Just mostly wanted to say that I empathize with your feeling scared.
Keep the faith.

sassy · 10-13-2009, 06:12 PM

Maureen,

As Chrisy said, what would the rationale be for halting Herceptin? Seems it would be even more important should this be a recurrance. Is this perhaps a knee jerk reaction?

What is your new onc's experience with HER2+ BC?

All that said, I too had a small spot show on my lung while on Herceptin. My onc felt certain it was a small exposure during radiation, and nothing more has come of it, four years later. I had a CT two weeks ago that was clear.

Getting the oncs to consult with one another would surely be helpful.

Sending strength,

Ruth · 10-13-2009, 06:21 PM

Maureen ~ I hope that you can get some answers to make you feel better. I question stopping Herceptin too. I would want to stay on it anyway since it would be part of any new treatment I assume? What a horrible waiting period! I know you want answers. You are in my thoughts and I hope it is just scaring which does happen often.
Hugs ~ Ruth

Yorkiegirl · 10-13-2009, 06:31 PM

Maureen I am so very sorry you are going thru this. Maybe you can have your new Onc call Dr. O and they can discuss together.
Does this new Onc how well known Dr. O is? I know at the place I go to Texas Oncology they even consult with Dr. O on things.
I would worry about stopping the Herceptin with out any conclusive dx.
I will keep you in my prayers.

Joan M · 10-13-2009, 06:50 PM

Maureen,

I'm sorry you're having this difficulty, especially after just relocating. And also having to deal with widely different opinions.

I had a solitary nodule in my left lung that turned out to be breast cancer, and here's a few things I learned from the experience.

What was the uptake value (SUV) of the PET? Was it 3.0 or greater, which could indicate cancer (it can also indicate an infectious process).

Did the PET scan have a CT portion (as in PET/CT scan)? If so, was there a nodule on the CT portion that correlated to where the PET lit up. Even though the scan is a nuclear test that emphasizes the PET portion, which measures the intensity of metabolic activity (hence the light), the CT actually looks at morphology (sort of like a mammogram that describes how a nodule or a cyst looks). It's also used for correlation purposes and gives a more precise location of the area that lights up.

If there was a nodule on the CT portion, how big was it? Was it described as spiculated? Spiculated nodules are suspicious for cancer. (I'm not sure what lobulated means in this context.)

How big was the area that lit up on the PET portion? The probability of a nodule lightening up decreases when the nodule is under 1 cm, but that doesn't mean it isn't malignant. In my own case, in 2007 a PET/CT showed a 9 mm nodule that lit up and looked malignant on the CT part of the scan. However, that same nodule showed up on the CT portion of a previous PET/CT, but it was only 5 mm and was not noted in the report since it was too small and didn't light up. That is, the PET/CT is a nuclear test, so emphasis is placed on whether anything lights up. My onc asked the radiologist to compare both scans, and sure enough, the same nodule was there in the previous scan six months earlier. She asked for the comparison to determine whether the nodule had been there and, if so, how quickly it had grown.

The size gives an indication of whether to proceed with a biopsy. If a suspected area is under 1 cm, it's difficult to get an accurate result. The radiologist using a CT guided biospy may end up not getting enough for any result. Or, in my case, for the nodule that was 9 mm the radiologist got a piece of it but the path report noted only adenocarcinoma. The problem was that both breast and lung cancers are adenocarcinomas, and there wasn't enough from the biopsy to distinguish them. I had only one nodule light up and having previously smoked, lung cancer could not be ruled out (and it's not treated the same as metastatic bc). However, my local onc had my breast cancer slides sent to the large cancer center to compare to the biopsy slides, and based on the comparison, the pathologist favored a diagnosis of breast cancer. When the nodule was surgically removed and tested, it was found to be breast cancer.

So, you might want to take some of this information into consideration in determining whether to proceed with a biopsy or to wait perhaps for another scan to see whether the area is growing. There's something called doubling time which shows the rate of nodule growh based on number of days over a period of time. It can be used to indicate whether a nodule might be malignant, benign or an infection.

I'm sending you a lot of hugs for comfort.

Joan

Sherryg683 · 10-13-2009, 07:05 PM

You definately need to know the SUV factor as some has stated. My lung met (if they indeed were) had a very low SUV factor .08 and 1.5. I have read that if they are over 5 then it can be worrisome for cancer. I never had mine biopsied because I was told they were too small and treatment would have been the same anyway. But if something ever came back, I would indeed insist on a biopsy, that's the only way to know for sure and if it's not then your mind will be at ease. sherryg

Jean · 10-13-2009, 08:49 PM

Maureen,
My dr. has been following a small nodule on my lung for over two years. It has not changed in size. Just had another c/t scan and will be getting results.

Maybe you should see a lung speialist...to work with your onc. That is what I did. I think Joan has given you great advise. I know that if the nodule is small it is very difficult to do a biopsey and may not be worth the risk
especially if you track the nodule and no growth is present and proves to be just a benign nodule.

Get that third opinion and see a lung specialist.

Best wishes,
Jean

Paty · 10-13-2009, 09:09 PM

Maureen,

You said spot in upper right lung. Not long after I finished radiation, I started coughing and had short of breath. My onc ordered an x-ray and the radiologist said it was metastasis to my lung. I went to my onc and ordered another x-ray, it turned to be lung fibrosis from radiation. Check out again, you may probably need a third opinion. Love to you....Paty

ElaineM · 10-13-2009, 09:18 PM

I am so sorry you are going through this. Being in a different environment makes it even more difficult for you and your family.
Did the PET scan show hypermetabolic activity? I think hypermetabolic activity during the PET scan shows where the cancer is in the body. How big is the lung nodule? Many things can cause small lung nodules.
I think all the doctors involved should have a conference call to discuss your situation. Sometimes they can all be looking at your films while they talk. I once participated in a conference call between two doctors and myself. We were all looking at my films even though we were in different places. It was pretty cool !!
I would continue the Herceptin even if everyone decides on a biopsy. I had several actual surgeries with general anethesia at the beginning of the week and Herceptin plus chemo at the end of the week without problems. I had major hip surgery that ended early Thursday morning and still had my treatment on Friday afternoon. It can be done if you are physically strong.
Take care. Hang in there.

SoCalGal · 10-13-2009, 10:16 PM

For sure I agree with Chris - WHY cancel herceptin? I might have to cancel that oncologist. There are too many questions and there is also a school of thought with her2+ cancer that goes something like this:
If you put a road block in the road (herceptin) which blocks most cars, but a few small ones sneak through, don't remove the road block - add to it - reinforce (tykerb, avastin, etc). That was described to me by Dr Glasby at UCLA.
Stay strong - you're gonna be ok! Stay focused and make them answer your questions.
Flori

Linda · 10-13-2009, 11:14 PM

Maureen:
So sorry you are going through this. It is SO stressful.
There's a lot of good advice from our sisters on this thread. The only thing I have to add is to suugest having other radiologists look at your scans and make a report. Your onc is reacting to the report, I suspect, not the scan itself.
Lung spots/shadows/nodules seem to be notoriously hard to diagnose, with lots of false scares (I had 2.) Find the top 2 radiologists in your new area and ask them to weigh in. And yes, radiation can and does change the way your lungs look on scans.
Good luck
Linda

mmoons · 10-14-2009, 07:53 AM

You guys are THE BEST!!! Seriously...! I feel so bad for reading often but posting rarely. Although you are always in my prayers I get so little time on the computer that I have fallen off on posting my support. So thank you for still caring about me. Okay, enough of the Catholic guilt. I am so grateful for you all.

I insisted on my Herceptin for today so they have me back on the schedule. I go this afternoon just in time to get the kids from school.

Additionally, I am picking up my x-ray and scans from the hospital to overnight them to a couple different radiologist who have agreed to look at them.

I have also found another well-respected doctor at Karmanos in Detroit who will see me next week.

Regarding the report, it bothers me that it says "Primary versus metastatic cancer until proven otherwise". I guess they have to say that. It says I have low grade F-18 FDG activity and the SUV is 3. It is very small = 1.5 cm. The nodular density is in the anterior right upper lobe and shows on the x-ray and PET - CT. I am not a physician but it just seems to make more sense that it is radiation scarring because it is right there where I had radiation. As far as the ribs, I am sure my bones are more brittle from a year of treatment.

I will let you know what happens. I feel very positive.

Thank you all again...so much!!

Maureen

Shobha · 10-14-2009, 08:10 AM

Maureen,

I am happy to know you got herceptin back and are getting additional opinions!

I am praying hard that it is only some scarring and nothing more!

My bones have become very brittle too and I have been on Evista for past one year. Also taking 1500 IU of Vit D3 every day to help with the situation.

hugs,
shobha

alicem · 10-14-2009, 08:20 AM

Hi Maureen,

I don't have anything else to add from what everyone else has said. I just wanted to comment on your beautiful picture - your hair is growing back YAY!!

I'm sorry that Texas has lost you to Michigan - I hope you've been able to stay warm, I see that the weather has been quite chilly lately.

Anyway, I hope you get some answers soon. Glad you were able to get your Herceptin. Wishing you all the best.

Alice