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YIKES! This is getting complicated....

Clovergirl
Posts: 47
Joined: Dec 2012

I had a PET Scan on Monday.  If any of you had seen my previous posts under GOOD NEWS BUT.... you will know where I was in this process.  In short, after my original diagnosis nothing showed up at all on my CT or MRI.  They put my case in front of the tumor board last Thurs.  They called me after the meeting that day and said they would like to go ahead and do a PET Scan although they did also all agree that the standard protocol for treatment is being recommended.  So, I have the PET on Monday.  The chemo Onc office calls me that afternoon and schedules me to meet with him again this Thursday.  Now, this morning, the Rad Oncologist (really like him) calls me and gives me the results of the PET. I have a very small spot that lit up on the right Labia and a big area that lit up brightly in upper lymph area (not groin area, he says up more by pelvis waistband area).  He said he couldn't believe it since MRI was clear. Good thing they decided to do the PET. They are having me see a Gyn Oncologist and he is requesting that they do a biopsy (I guess both spots?under anesthesia). He doesn't feel that this is the area that anal cancer nornally travels to (not saying it's not). He wants to find out if I have a second kind of cancer before starting treatment.  He said they want to stop and take a step back to re-evaluate.  He said it could change both his and the chemo Onc treatment plans if not same kind of cancer etc...  Has anyone had this type of situation? And has anyone dealt with Labia cancer?  I really just want to get started with treatment.  I'm frustrated now.  I went from not sure what they were doing to do, to okay we're going with the protocol.  I was ready to do and fight this crap and now I'm at a stand still again.  Probably for a couple more weeks. The GYN Onc office just called me while I was typing this. (they do move very timely at my medical facility) they made the appointment for next Wed. with this Dr. UUGGH, another week of waiting. Then after my regular appt with him I know I'm going to have to be scheduled for the surgical part. More waiting.  Also, has anyone seen an Oncology Psychologist? I'm a wreck!! Anxiety through the roof. Have an appointment for a massage this week hoping that will help too. Thanks for any help.

mxperry220
Posts: 360
Joined: Mar 2011

I had CT, MRI, and Pet scans before doctors came up with a treatment plan.  I was Stage 2 Anal Cancer.  I had no lymph node involvement and cancer was restricted to anal tumor.  The doctors doctors said they wanted to run all these tests to make certain they were all in agreement on my treatment plan.  It sounds like you are in good hands and your doctors are being very thorough.  Hang in there.  Once treatments start your anxiety level should greatly diminish.

Mike

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

While this news is, indeed, unsettling and frustrating, it is so good that your doctor(s) have performed additional testing on you.  PET scans often show things that CT's and/or MRI's do not and it's better to have this information before beginning treatment so that the most effective treatment can be planned for you.  My tumor was localized, so I can not speak from any personal experience, but if there had been any suspicions that it was not, I would have wanted more tests prior to treatment. As for the spot that lit up on your labia, this could be caused by cancer OR other things.  A biopsy will answer that question.  As for the other spot that lit up, it's true that anal cancer typically spreads to the lungs or liver, but as with anything, there are always exceptions.  It's a very good thing that they are not just presuming it can't be cancer and will be doing a biopsy.  It sounds to me like you are in very good hands, so try to not be overly anxious.  Waiting is very difficult--we've all had to do it and can sympathize.  Just know that we wait with you. 

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I had something similar sounding happen to me. As it turned out, I did have 2 separate cancers. They found that out only after specialized scans and then biopsies of lymph nodes. I changed hospitals after the initial diagnosis. It is really, really important that you get second opinions from top rated specialists if it gets more complicated.

Hang in there!

Clovergirl
Posts: 47
Joined: Dec 2012

that they are doing exactly what they should be.  I am so glad theydid the PET scan.  I'm at the Cleveland Clinic, and so far feel they are really on top of things.  They definitely have gone step by step with each test and the docs talk amongst each other and are communicating regularly.  I know this because they all call me and mention what each other has said and what "they" as a team are doing.  After the GYN Onc visit and then the biopsy surgery I will hear what they have to say.  I would absolutely go elsewhere for a second opinion if I felt it necessary though.  The waiting is always the worst but I know I'm waiting for all facts before starting treatment, and that does make sense to me. 

jcruz
Posts: 232
Joined: Jan 2013

I also had an suspicious area on my labia.  At the same time I had abscessed cysts in both Bartholin's glands.  I had surgery to take care of the Bartholin's glands at the same time I had the surgical biopsy of the anal tumor.  I was also referred to a gyn oncologist for an exam and for his opinion on how and when to treat the labia - before or after treatment, whether I needed surgery there.  I had the most thorough painful pelvic exam ever but also had the longest most comprehensible discussion with him after.  His recommendation was for the other oncs. to proceed with treatment and then if necessary he would re-evaluate me after.  I did have extra radiation treatments focussed on the labial area but otherwise I received the standard concurrent chemo and radiation treatment.  I've had follow-ups with my local gynecologist in addition to my rad and med oncs. and no one thought I needed to go back to the gyn onc for a follow-up, at least for now.

A few extra appointments with all of my doctors did push the beginning of my treatment back a few weeks and it drove me crazy.  I just wanted to get started!  

Hang in there and please let us know what comes next for you.

 

torrance
Posts: 118
Joined: Jan 2012

Wow, you are understandably a wreck at this point.  I am so greatful for your doctors taking the necessary time to diagnos and plan the most appropriate treatment for you.  Understand the waiting is to your benefit and perhaps think of it as your drs prioritizing your well being.  I have never heard of an Onc Psychologist, but can definitely understand the need for one.  I so applaud you for finding this and considering it.  I say GO, run, don't walk and talk to one.  Depression is a common side effect of cancer treatment so perhaps staring with the onc psych before hand would help you to help yourself through this.

 

Prayers,

Joanne

Marynb
Posts: 1134
Joined: Aug 2012

Clover,
You are at a great place and it sure sounds like you are in good hands! Hang in there. You will be in my prayers. Let's hope they are able to figure this out for you.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

The anxiety is understandable.  I had lymph node involvement.  I also had lymph nodes that swelled up and looked very suspicious.  But it turned out that they weren't impacted.  They were just "angry" from all the invasive tests.  It sounds like your doctors are on top of things and communicating with each other.  Hang in there.  I remember in the early stages of my diagnosis/treatment, the anxiety was terrible.  They put me on Ativan.  Low dose. It cut the edge and helped with the anxiety.

You are in my thoughts and prayers,

Liz

Porter
Posts: 5
Joined: Oct 2012

I understand.  When I had my petscan 3 areas lit up and I had to make an appt with my gyn.  Long story short is that I had beginning stage endometrial cancer so I ended up having a davinci total hysterectomy before beginning treatment 2 weeks later.  It all worked out really well.   I was very happy to have all the "ole" equipment out before beginning the standard Nigro protocol.   The robotic surgery was great and I was up walking that night.  Everything healed and then I could just concentrate on getting through the next 6 weeks of treatment.  It was also good that I didn't have to think of having another procedure after healing and recovering from the AC treatment.  I also had some external tags and formerly had vulvar dysplasia.  My gyn oncologist told me that everything would be radiated so I didn't have to worry about any external cancer as the treatment would "fry" it all.  Be certain you're comfortable with your team and they'll be able to sort through and determine priorities of treatment.  Sending positive thoughts and well wishes during this trying time for you.

Marynb
Posts: 1134
Joined: Aug 2012

Good luck!

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