pet scan result...what the .....?

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

pet scan result...what the .....?

Postby Trying » Mon Jun 18, 2018 6:50 pm

I have oncologist appt tomorrow but picked up my pet scan results from my dr office today to provide to my medical leave. Luckily no spread to brain or lung but says met to breast that is 5mm. ???? Im freaking out because google ( i knpw i shouldnt google) only shows reports of about 2 people who died right away whenet went from colon to breast. Feeling so torn down. Please only positivity.thank you
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: pet scan result...what the .....?

Postby Detox » Mon Jun 18, 2018 7:20 pm

I'm really sorry to hear this. The impression portion of your report says breast metastasis or does it say SUV uptake? My pet scan from three years ago said mass in liver with SUV of 4.3 along with possible metastases. I proceeded to do an MRI and it ended up being nothing.

Hoping this will be the case for you. If possible and if you don't mind, can you paraphrase what the IMPRESSION portion of your report says? I think others will be able to help you interpret as well.

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: pet scan result...what the .....?

Postby betsydoglover » Mon Jun 18, 2018 7:36 pm

My perspective on getting radiology reports before seeing oncologist:

Stage 4 - many scans over many years. The stress of waiting for results (even though my radiologist and onc are very prompt) is intense.

At one point a few years ago I told my onc I wanted to get results from radiologist first (being an adult after all) and then speak with her afterwards. Her answer really put things into perspective for me. She asked if I thought she did nothing when she got the initial results? Did I not know if anything possibly "showed up" that she and my radiologist (same one for 12 years) would discuss it at length before deciding next steps? Did I think there was no value added between radiologist impressions and oncologist's understanding of the individual patient's disease? etc. I am blessed to have a radiologist who actually has a medical interest in patients (possibly somewhat unusual) and an onc who will debate and discuss findings with our radiologist. So, I don't ask to see my scans etc reports until I discuss them with my wonderful oncologist.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: pet scan result...what the .....?

Postby Trying » Mon Jun 18, 2018 7:47 pm

Says "internal mammory lymph node" and the summary says met to mammory
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: pet scan result...what the .....?

Postby Detox » Mon Jun 18, 2018 8:23 pm

Other members here can confirm but I don't believe that any PET scan can make a 100% diagnosis of metastases. All the report can do is suggest based on SUV uptake which can be caused by many other factors. Once again in my instance SUV uptake was caused by the healing process of my liver after surgery even though the report said it was possible metastatic spread.

Also, it's not common to have colon cancer metastasize to the breast so the only sure fire way to know it's cancer is though biopsy I believe. Hoping that is the case for you and that the cancer is just confined to the liver. On a slightly positive note, thankfully that's the only place (other than liver) that is suspect at this point. With first line treatment of chemo, hopefully you will respond which will resolve the lymph node (if it is cancer) and reduce tumor burden on your liver as well.

betula
Posts: 9
Joined: Sun Jun 11, 2017 10:38 am

Re: pet scan result...what the .....?

Postby betula » Mon Jun 18, 2018 8:27 pm

I am sorry that I have nothing to add other than we are in the same boat and understand your stress. I too read my husbands report today and we see the oncologist tomorrow. This all started on the 7th with a ct scan that then led to a pet scan. This waiting is brutal. Tried to read between the lines so to speak with the pet scan and searched and searched info online. Have been researching since the 7th really. It can make you crazy.

I hope these is nothing but good news for you tomorrow!

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: pet scan result...what the .....?

Postby Trying » Mon Jun 18, 2018 9:20 pm

Thank you all for responding. I am only at the beginning of my journey but already feel some days are such rough roads.
I wish all of you strength and courage.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: pet scan result...what the .....?

Postby stu » Tue Jun 19, 2018 4:43 am

Hi ,
All they can say for sure is that you have uptake in your breast area . That could be caused by many things . Nine years into a stage4 diagnosis the hardest scans to interpret are PET scans . It’s one I leave well alone . Around year five my mum had to go for further testing due to something that showed on her breast . Turned out to be nothing of concern to anyone .
It’s still there actually as are many other internal lumps and bumps including in her plural cavity . They are not cancer but gave us quite a shake at the start . An aneurism in her kidney must have occurred at some point in her life too!! That threw her too . Others have the blessing of not knowing their lumps and bumps .
Hope it turns out to be nothing . Certainly not heard of that before.
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: pet scan result...what the .....?

Postby Capri » Tue Jun 19, 2018 7:51 am

I'm sorry that you are so distressed Trying, It's hard not to be but I hope that you have gotten some reassuring words from your oncologist.
Please keep us posted. I wish you well!
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: pet scan result...what the .....?

Postby DarknessEmbraced » Tue Jun 19, 2018 8:14 am

I'm sorry you're going through this.*hugs* I hope you will be able to see your oncologist soon to get answers.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: pet scan result...what the .....?

Postby Trying » Tue Jun 19, 2018 4:16 pm

Dr says its just lymph node from my liver mets. Very happy with new oncologist at the cancer center
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: pet scan result...what the .....?

Postby Detox » Tue Jun 19, 2018 6:27 pm

Glad to hear as it sounds like the cancer is confined to your liver. If the chemo shrinks your liver metastases, hopefully you can have surgery to remove them and reach NED status. This has happened for many people., so hope this happens for you too.

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: pet scan result...what the .....?

Postby Trying » Tue Jun 19, 2018 7:37 pm

That would be amazing. Do you know if posdible if they are in both lobes of the liver?
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Detox
Posts: 61
Joined: Fri Apr 28, 2017 5:27 pm

Re: pet scan result...what the .....?

Postby Detox » Tue Jun 19, 2018 8:26 pm

Yes, I've heard of patients with tumors in both lobes of liver having resection. From what I have heard, 3 lesions or less is the most preferable but I have seen patients here with many more mets on their liver having successful surgery. But it appears that 3 lesions or less is the sweet spot for attaining possible cure. Anything more than 3 liver metastases being resected has a higher rate of recurrence if I'm not mistaken. Also depends on location of tumor but I haven't seen that many cases where patients were not candidates due to the tumor being in an unresectable location. This happens but I think it is rare.

My oncologist told me has seen 15 liver lesions disappear with chemo and since you are young, I think the doctors can be aggressive with your treatment. But getting the tumors surgically removed is the best option for reaching cure.

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: pet scan result...what the .....?

Postby Trying » Tue Jun 19, 2018 9:10 pm

Thank you so much!!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020


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