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Old 09-17-2006, 11:15 PM   #1
Alice
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Question help about symptoms?????

I just read the post titled "symptoms of mets" and I have some questions for any of you out there that can ease my mind. I finished chemo 9/05 had sx 10/05 finished radiation 1/23/06 herceptin 1/06 thru 6/06 stoped due to cardiac problems. I have had an ache in my left pelvic area for about 8 weeks and weight loss. My Gp ordered pelvic ultrasound which showed a cyst on left ovary.He also ordered an abdominal ct to confirm this, which it did. What suprised him and me was the presence of multiple 5 mm densities in the periferal lower lung lobes of both lungs. Recomendation to have a chest ct in 3 months. Having no symptoms my onc said that I should have chest x ray done at that time. I know my onc doesn't like to do tests unless there are symptoms due to false positives and exposure to radiation in addition to there being no difference in overall outcome. Knowing this, a part of me still wants to know, even if nothing can be done about it what the likelyhood is that these are mets. My onc did use the term " nodules" which to me beeing in the vet med field means "mets". Any advice you can give me I do apreciate.

Thanks, Alice
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Old 09-18-2006, 07:13 AM   #2
John21
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Keep on him. They start small, but as you know. For my wife, I try not to drop the ball. I want to be ahead of everything. Call your Onc. again and say you want the ct/pet scan sooner.



John
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Old 09-18-2006, 07:41 AM   #3
Lolly
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I agree with John, a PET/CT asap. If these are indeed mets, you can't sit around for 3 months letting them spread further. Many here have successfully dealt with lung mets. Navelbine/Herceptin is a great combo for this, and given your break from Herceptin these last 3 months, it's quite likely your heart muscle has recovered (this has also happened to several here) and you can resume Herceptin. If the heart is still compromised, and you're dealing with mets, you can also ask to see a cardiologist who should be able to get you on some meds which will stabilize the heart and allow you to resume Herceptin(again, this too has been the case with several who've posted here; this site is wonderful that way!).
I think your instincts are correct in wanting to know sooner rather than later. Please keep us posted.

<3 Lolly
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Old 09-18-2006, 11:40 AM   #4
AlaskaAngel
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One more opinion

I am 4 years out and NED and having tests that involve rads as more and more time goes by is a difficult question. This is where sometimes when I am sitting on the fence about it, having either a CA15-3 or CA27.29 can provide just one more tiny bit of info.

For example, I was very reluctant to have a recent bone scan (which turned out to be clear). My markers came back fine as well. But I went ahead with it because I am having other labs that are out of range, and I believe my doc was just trying to make sure that I wasn't having cancer problems in addition to some of the things that cause labs to be crazy at middle age.

At any rate, given the info you have... if it were me I would want to have further testing--even with more radiation--sooner rather than later.

In addition, do you happen to be a smoker or have a history of being one?

Are you noticing any consistent change in your ability to breathe, including recovery after moderate exercise?

AlaskaAngel
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Old 09-18-2006, 02:15 PM   #5
StephN
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Thumbs up Radiation from scans

Hi Alice -
That happens to be my middle name!

To my mind, the advice from others here to not sit on those "hypodensities" is good. Hopefully your med onc will not feel challenged by your wish to go a step further sooner than 3 months.

I have been having various scans for years now, but they are necessary to make sure I am still NED and that Herceptin alone is working to keep that way.
There was a thread here not long ago about the risks of the radiation from scans.
My med onc seems to feel that there is basically no increased risk from CTs every 6 months. We used to do them more oftem, but my tumor markers are good indicators so far and these are taken every 3 weeks. This way I am kept pretty close to his radar screen.

Let us know how this goes for you, OK?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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