PET-CT scheduled

hope-is-all-i-have
hope-is-all-i-have Member Posts: 17
edited June 2014 in ILC (Invasive Lobular Carcinoma)
PET-CT scheduled
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  • hope-is-all-i-have
    hope-is-all-i-have Member Posts: 17
    edited March 2010

    Hi everyone

    I had been reading most of the discussions and posts these last months. Now this is my first post :-)....This is undoubtably a very very nice place for BC fighters and their family members. 

    I am actually my mothers mouth piece. She is not very tech savvy so m filling in the gap. 

    My mum, 53, was diagnosed with BC (ILC grade II) in Feb 2009 and subsequently went thru left-breast Mastectomy, chemotherapy for 6 cycles (combination of Docetexal, pharmarubicillin and other supporting meds), then radiotherapy (3D-CRT, IMRT wasnt required according to docs) and now on hormone therapy (letrozole, this is better than tamozifen for postmenaupausal woman I am told)...

    Her ER is weakly positive, PR+Ve and Cerb is negative...One sad thing is that 14/16 lymph nodes showed metastasis some with peri-nodal invasion.

    Now one year on, we are going for a PET-CT scan later in March end. A bit worried about what the result might turn out.  Its comforting to see so so many survivors here. I owe my hope for my mother to this website..

    Thank you very much indeed.  

    Yesterday her doc told her tat her blood pressure had risen to 140/90. all these years it was 120/80 exact..everytime!.. She was a bit worried with this and seeking second opnion. Well, I hope its jus a minor fluctuation and comes back to normal. 

    Cheers to everybody

       

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  • nash
    nash Member Posts: 2,600
    edited March 2010

    Hi, hope. Welcome to the boards. Keep us posted on your mom's PET results.

    I wouldn't worry about a small spike in BP--the reading can fluctuate during the day, and she may have just been a bit tense at the doc appointment, which could have made the reading slightly elevated. It also could have been misread. My BP is almost always 102/59, but I've had it be 125/85 when I'm nervous. So I wouldn't put too much emphasis on the BP unless there is a marked upwards trend over time.

    I've been on both sides of the cancer thing as the caregiver and as the patient, and I have to say that the emotional component as caregiver was much tougher for me. So big hugs to you. 

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  • hope-is-all-i-have
    hope-is-all-i-have Member Posts: 17
    edited March 2010

    thanx nash for the kind words.

    Yes, I will certainly do.

    I totally agree. its equally hard for the support members. Following the PET scan, we have planned a pilgrimage to a holy place in India, a place where she wanted to go since long.   

    The exact reason for my mums condition isnt clear..its not genetics, nor anything else. no problems watsoever all these years too. in such a situation, how can we prevent a recurrence? I understand its a tough question to ask but still..we cant be sittin tight and hope for good things to happen...can we? 

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  • hope-is-all-i-have
    hope-is-all-i-have Member Posts: 17
    edited April 2010

    Hi

    Somehow my mums PET scan got postponed and now its scheduled on 15 april morning. This is her first scan. I am told she has to fast from 10pm the previous day and drink only plain water. Only a blood creatinine test is required to be done. 

    are they any other things she will have to take of? are there any complications invloved in this procedure? I mean I hear that there are chances of false positives etc...what do we rely on in this case?

     

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  • hope-is-all-i-have
    hope-is-all-i-have Member Posts: 17
    edited April 2010

    We got the PET CT report...

    "Subtle osteolysis in the left anterior 3rd rib with adjacent 8*5mm pleural soft tissue density, may represent post radiotherapy sequalae. Recommend clinical correlation and followup."

    Rest everything is normal and unremarkable.

    Could someone please tell me what does the above mean? Doc says its nothing to worry about. Is it beginning of some metastatic behaviour. am praying to God real hard

    Please help

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  • nash
    nash Member Posts: 2,600
    edited April 2010

    hope--it was my experience with my late Stage IV mom that if something on the PET is suspicious for mets, the radiologist will say so. They err on the side of covering their butts. I think it's completely reasonable that the density is from the rads as opposed to occult mets.

    I had a bone scan come back with a suspicious area that the radiologist said should be clinically correlated, which they did, with an MRI I'd had done a few months prior. Everything appeared OK on the MRI, and my onc didn't make a big deal out of it at all. If your mom's doc isn't concerned, then I would try not to be, either. 

    My mom's theory on all this was that if there was something wrong, it would eventually present itself in an obvious manner, so there wasn't much point in worrying about it in the meantime. I can understand where you're coming from, b/c I worry the same way, but I've tried to take my mom's advice to heart in my own situation.

    Big hugs to both of you--I know all of this is stressful!

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited April 2010

    I'm no expert with PETs but I have had a few as part of a study I participated in so my reference is what I've seen with my results.  I've seen findings come and go.  As an example, on my last PET two items with found with "focus of FDG activity" and CT scan are recommended.  The study onc's response is that they are nothing to be concerned about and it is up to my primary onc if he wants to follow up with a CT.  Much stronger recommendation than your mom's but I still have to go with what the oncs are telling me because PETs can report things that aren't of concern.

    So I would not be overly worried about your mother's results.  If the doc is not worried then it probably is exactly what the radiologist reported, post radiotherapy sequalae, an abnormal (but not threatening in this case) change from radiation.  You might want to go back to the doc and ask for some specific information on what the abnormal change might be and why he is not concerned about the change.

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