PET results suspicious for small metastic lesions

[candlegranny]

I dont know what I am feeling right now. I talked to my oncologists assistant on Monday or Tuesday?? she said to wait and see the doctor on 26 Aug. she said the spot they found was too small to even be biopsied so we just have to watch it and wait. she said if I felt better I can leave my port in for another 3 months. I finished herceptin in May. Today I went to my radiologist for a follow up and they had sent a copy of my PET to them. MY radiologist was on vacation so I saw his substitute for this week. When I saw it I saw an addendum on it. OMG no one mentioned that too me. I dont know what to do but retype it for you and ask your opnions from your own experiences.
first part - Interval development of a 1.2 cm vague nodular density within the left apex laterally. this demonstrates mildly intense increased activity on the PET scan and may represent a small area of focal pneumonitis versus a small primary or metastatic malignancy. Clincal correlatoin and PET/CT follow up is recommended. the remainder of the PET scan was within normal limits.

THEN THE ADDENDUM: there are 2 other very small approximately 3 mm nodular lesions within the left upper lobe anteriorly. These developed since the previous study and are suspicious for small metastatic lesions. Dedicated CT imaging of the chest is recommended for further evaluation.

now there you have it. I am believing this can jsut be scaring from radiation, since it is the left side and top where I had radiation, My husband says we will just fight it again. I wonder how it can come back so fast? Is that normal to stop herceptin and in months have metastatic lesions? I guess I have to wait on more tests. I have blood work on the 19 and see my oncologist on the 26. I am going to see my radiologists next week as soon as he gets the disc of the PET so he can look and see if this is an area I got radiation - making it possible for scar tissue. I dont want to think i am in denial but being positive in thinking this is not what it can be at the worse but scare tissue or something besides cancer. thanks for your time to read this and reply, Bonita

[Becky]

Dear Bonita

Of course you should be positive but it must be very hard not to be scared. Stay strong. We are here for you - the waiting is the hardest part.

[NanaJoni]

Bonita - I have radiation pneumonitis in my right lung from the treatments I had back in Oct-Nov 2010. Do you have any symptoms like shortness of breath, fatigue, etc? There is permanent scarring in my right lung just where the radiation was targeted. I'm seeing a pulmonologist now who is very good and am on low dose steroids to prevent progression. Praying for you that it's not mets but the radiation damage can be pretty tough, too. I'm on oxygen at night now and have some limitations on activity but feeling blessed it's not more cancer.

[hutchibk]

It's always possible, sadly, for it to come back either slowly or quickly, even after rads or Herceptin. It's cancer and cancer isn't predictable no matter what. A CT will help your doctors determine what it is, either scarring or activity. Your blood work and tumor markers will also help make that determination. I always go to my radiation onc to look at my scans w/ him, too, so we can monitor how rads have done for us. We have had questions about whether it is activity or necrosis in the past (in the brain so PET wasn't going to really help us answer that)... so we actually decided in lieu of brain surgery to re-radiate the two spots in question.

And, then there is always the chance that it is not cancer activity.

Best wishes and let us know what the docs tell you.

[candlegranny]

My radiation was from august to october 2010. I have a little shortness of breath if i am active like climbing steps but not enough to slow me down much. I have a spot on my lungs they think may be pneumonitus but now these 2 new ones. the radiation oncologist told me scar tissue can show up months to years down the road. I am praying that is what it is. doctor said wait 3 months to see if it gets larger. i think in that 3 months I will do some work around house, painting and sorting out stuff so if I do need treatment, that is all i will have to concentrate on. Last time I had no time to prepare, diagnosed on jan 21 surgery on jan 29 so this time I will be prepared, if htat is at all possible.I will also be keeping busy and I hope that will ease my mind a little. I have to remain positive. bonita ~

[Ellie F]

I truly understand how difficult this waiting period is.My CT scan in November highlighted several small areas of concern (about 5 in total) in my lungs along with one bigger node. As they were too small to biopsy my onc took the watch and wait aproach and rescaned in January, three months later.The spots and node they were concerned about had resolved but another small one appeared. My onc was convinced that it was due to some inflammation lurking about. My scan also showed the area that had been irradiated.
I have recently had another ct scan and thankfully the new node has now also resolved.
I remember being so depressed over Christmas even wondering if I would make another year! but remembered Bonnie's post about her lung surgery and tried to hang onto the thought that it may be nothing and if that was the case I has spent 3 months ruining my life with worry.
Hang on in there, it may turn out to be nothing at all.

Ellie

[candlegranny]

thank you for sharing Ellie. I am going to try to spend next 3 months working around house... painting small rooms, cleaning out garage and closets, to keep busy and if i do need treatment, i will not be looking around at things i wish i had got done, praying no treatment just a decluttered, freshly painted house LOL.. thanks again for sharing your story lifted me up. Bonita~

[hutchibk]

If you're planning to paint (good distraction btw! can you come to my house too?) ~ be sure and wear a painter's mask. Also, seek out the Zero or Low VOC paints. http://eartheasy.com/live_nontoxic_paints.htm

They are better all around for your internal health, especially your lung health!

[BonnieR]

Yes, please keep in mind my experience. Even after a frozen section that said I had lung cancer and the removal of the right lobe of my lung, I was finally told a misdiagnosis had been made and the biopsy was negative after all. The areas were old pneumonia activity. In retropsect, I should have been seen by a pulmonolgist initially who would have treated medically to see if the lesions reduced.
I know we are all different but my story shows that we should never give up hope and that things are not always what they seem. When we have had cancer, conclusions can be jumped to...
So please, keep the faith.

[tricia keegan]

Bonita,

I had a suspicious spot too but on my spine and as it was too small to biopsy I had to wait a couple of months too but like Ellie when the scans were redone it had dissappeared so hoping for a similar outcome for you!

[candlegranny]

I love you guys! Ellie I so needed to hear an experience like yours as well as the rest. Bonnie i will ask about a pulmanologist before i go for surgery. I will meet with my radiologist tomorrow morning. he has the actual scans (cd) of my PET and will let me know if it is in that general area. Meet with my oncologist on the 26 august. I have found peace from this board, and my belief in the good Lord that all will be ok. I refuse to get depressed over wht could be nothing... Thank you Ellie and others for knowing and understanding what i am feeling right now. I hate we have this in common but so glad I have all of you here with me. You are all priceless to me. Bonita

[candlegranny]

Saw my oncologist today. Tumor makers are normal. He said he agrees with radiologist, spots are most likely scared tissue from radiation. My lungs sounded great all is good. He told me to come back in 6 months. I wanted to see him in 3 but he insisted 6 months. so I am excited and feeling good. thank you all for your thoughts and prayers. Bonita ~

[7andcounting]

Candlegranny, Awesome news!

[Pray]

I'm so happy for you and your family!!!! Continued blessings to you!!!!http://her2support.org/vbulletin/images/icons/icon7.gif

[BonnieR]

Terrific news! Keep the faith.

[Trish]

Fantastic news Bonita. Enjoy the painting and the painted house,
Trish

[Sheila]

Congrats Bonita on the amazing news....we are all waiting for you to come to our houses with your energy and painting skills......

[Jackie07]

Yippy! So happy to hear the good news!

[Elizabethtx]

Good news! I am so happy for you!

[candlegranny]

thank you all so much. this support board is priceless. i tell my oncologist about alot of things i learn on this board! I am so excited about my news... but the doctor told me with the number of lymph nodes involved.. 31 removed 18 cancer - there is a 50-50 chance this will come back on me. my husband says "we will just fight it again " like he has has mouse in his pocket :-) but i plan to stand on the good side of that 50 - 50 shot!
thanks again love you guys!! Bonita

[Ellie F]

Brilliant news. I am soooo very happy for you.


Ellie

[tricia keegan]

I'm just seeing your good news now Bonita and am so happy and relieved for you!

[Soccermom]

Whew!!! So glad th hear this Bonita!