Support needed: Waiting for mom's pet scan results

M2loomis

Hi there -

My mom was diagnosed with ILC over Xmas - Stage IIIa, 6+cm, Er/PR+, Her2-, 5/9 nodes. I am in Anchorage and she is in Texas so it has been difficult to offer support and be strong when so much of her medical info is coming from my overwhelmed father.

She went in for her pet scans yesterday morning, and we are still waiting for the results. She was told 24-hour turnaround at the cancer center where she is being treated. Of course, all I can think about today are any sign of metastatic symptoms: back pain, headaches, vision problems, constipation, fatigue - all of which can be attributed to other things, I realize.

I guess I just need some supportive words from you strong, seasoned survivors as we wait out the next few hours.

Thank you so much. These boards have been invaluable to me these past weeks,

Meg

Racy

I'm sorry for your mom's diagnosis. It must be hard for you being so far away from her.

I don't have any words of wisdom but you will know soon enough the outcomes of the scans.

Your mom needs to make sure that she has an experienced oncologist who is familiar with ILC and whom she likes and trusts.  

There are many treatments to choose from. If you or your mom keep posting here, others who have had the treatments that are recommended for your mom can share their experiences with you.

I had TAC chemo (six doses) and now take Femara.  Both have been shown to work well for ILC.

Keep in touch and we will help as much as we can.

Gitane

Hi Meg,  I hope your mother's scans show no spread of the ILC.  Racy's written what I would have said, so I won't repeat it.  Others have been right where your mother is now and are doing O.K.  Emotions are so "all over the place" at first; at least mine were.  There is reason to be hopeful and there is lots of help here.  Hugs, G.

M2loomis

Thanks so much, Gitane and Racy. Unfortunately, my mom did not get her results as promised. The onc is out on Fridays and her nurse did not call her back. Soooo...long weekend but everyone is thinking positively. 

Out of curiousity, how long does it typically take to get pet results back? And other than "what is your experience with ILC patients?" do you have any other suggestions to ask her onc so we can find a better one if need be?

Thank you!

Racy

M2loomis, sorry your mom did not get her results before the weekend.



Is she attending a major hospital/oncology practice? I think until she knows her full diagnosis and the onc's proposed treatment plan, it is too early to be sure if your mom has the best doctor for her. Sometimes it can be helpful to get more than one opinion on treatment.



Let us know what your mom's onc recommends for her.



Keep hopeful. Best wishes to your mom and you.

mary625

Re: test results in general, the time it takes depends on so many variables, but mainly the schedules of the radiologists and oncologists involved. And some hospitals or doctor's practices have policies about whether you can receive those results over the phone or in person. I waited days for mine until the appointment because no one had called me and they made me come in person for biopsy results. Then they acted like someone should have called me and told me all was fine. Very upsetting! I'm glad you're taking the proactive approach of calling.



I also wanted to mention that I just spoke with my oncologist last week about PET scan versus CT scan with nuclear bone scan since I had the latter and not the PET scan at diagnosis. I can't quote all of the medical reasons, but he still feels strongly that the PET scan is/was not needed or the best choice. As someone suggested above, a second opinion is always a good option and that doctor may prefer the CT/bone scan combination.



Hoping you and your mom get through the weekend as easily as possible. It's so hard.

floraD

Thanks so much for your responses, guys. My mom's pet scans came back clear, but I am recommending she get a second opinion. So hard to guide her to get good care without scaring her! She is getting AC x4 then Taxol x 4 then hormone Tx for 5 years. All sounds standard to me but I'd love feedback if you have some. Thanks! Meg

P.S. My account wouldn't work for some reason, hence new username.

Racy

Hi, you may want to ask about TAC x6 chemo then Femara. Both are very effective for ILC. The TAC is a shorter treatment than what has been recommended for your Mom and may be superior.