New Here...PET SCAN Results

dmdrumm

Hello all I have been lurking for about a week now...You all have truly been my lifeline in the last week...

My question is my PET SCAN came back showing lymph node near cancer is questionable they now want to do a needle biopsy before a treatment plan can be established (I found out last week I have Anal Cancer) how much does having a lymph node involved change things?? The nurse made a comment that this is not an ideal situation...which about sent me over the edge with panic. The only things that "lit" on the scan was the tumor itself SUV 7 and at least 1lymph node near the site

Has this changed things drastically?? than if only the tumor had lit up?? 

Im sorry I am really a mess right now and dont know really who to talk to about all this I guess I am looking for others that have had more than just the tumor itself with lymph nodes involved 

Thank you in advance for you information

Diane

 

AmyD1310

Diane

Hi Diane,

 

i was very recently diagnosed with anal cancer too. I begin treatment tomorrow. My doctor ordered a PET scan to make sure he was able to see everything and when he did, he said he could see the original tumor and 1 small lymph node right near the tumor. He said he is isn't overly concerned about it because he already planned to hit that area with radiation anyway. I'm not a doctor, so I can't say for sure, but I don't see how a lymph node involvement would change your prognosis unless maybe there are many lymph nodes or lymph nodes that are further away from the original tumor site? Again, I'm not a doctor and I am also fairly new to this whole thing, but I really want to tell you to stay as calm as you can and not worry too much. My doctors seem to be very confident that this is just something I am going to go through (that will suck while I'm going through it) but then it will be gone and I can go on about my business. I hope this helps. 

 

-Amy

mp327

Diane

I think I saw you on another site and sent you a welcome message there, but I will do that here also.  I'm sorry, however, that you have a reason to be here.  I know this is a very scary time for you, but I hope the good folks here can help put you more at ease.  One thing in your favor is that the lymph node that lit up on the PET scan is one of those that is close to the tumor.  It is standard procedure to include those pelvic lymph nodes in the radiation field.  You already know that, as per the PET scan results, no distant lymph nodes or organs are involved, which is the best news.

I have been communicating with others diagnosed treated for anal cancer for over 8 years and many, like you, have had lymph node involvement.  I'm happy to tell you that of those I still hear from, they are thriving and doing well.  I would encourage you to learn as much as you can about the treatment you are about to have.  One good way to educate yourself is to register on the site for the National Comprehensive Cancer Network at www.NCCN.org.  The information there will answer a lot of your questions about staging, treatment and follow-up.  Also talk to your doctors about your radiation treatment and what the field of treatment includes.  I'm sure you will be reassured that the hot lymph node will be zapped.  Even though I had no lymph node involvement, my radiation field included the lymph nodes through the first part of treatment.  The radiation field was reduced two times throughout the 6 weeks.  So, even though my lymph nodes were clear, they still got some radiation.  

Keep in mind that anal cancer is highly treatable, even when there is lymph node involvement.  I am very encouraged that you will be just fine and that all of your cancer will be zapped.  Educate yourself, ask your doctors to explain everything to you, and don't hesitate to come here if you have further questions or concerns.  I wish you all the best.

Martha

dmdrumm

Thank You

Amy and Martha 

Thank you so much for your response...This is all so new, scary, and so beyond my control. I have been able to be more calm than the first couple of days following the "you have cancer" phone call but there have been a couple of times I am pushed to the edge of the cliff and need to be talked down. 

Martha I did register on another site but am unable to get back into it? I will try again this site has been so helpful I have been lurking here reading all I can.

Again Thank you for responding Im sure I will have many more questions throughout 

Diane

tanda

dmdrumm

I was node negative, but I think the nearby inguinal nodes were in the radiation field; I suspect that ,as Martha stated, that is standard.  Did you also have a CT scan as part of your work-up?  Often a CT scan is clearer.  I am also assuming (?) that you are working with a treatment team and there are several doctorscoordinating and planning your treatment. You should take your time (it has taken a long time for this tumour to develop enough to make itself known); you do not have to do everything yesterday!  Take the time to meet with your team and ask as many questions as you need to give yourself an understanding of this disease and the treatments being recommended.

Everyone on this site and on the blogforacure.org has  had basically the same treatment, and we have all gotten through it, with some variations in type and intensity of the side effects.  

By the way, where are you located?  Where are you planning to be treated? 

dmdrumm

tanda

tanda

I only have had a PET Scan they are wanting to needle biopsy the node in question I live in a mid sized town in Nebraska the oncologist the surgeon set me up with comes out of Omaha once a month which he is out of a large hospital there but he does have many practices throughout the state and 1 or 2 in Iowa. They will not do the needle biopsy here as they are not comfortable doing so they are setting me up to have done in Omaha which is about 1 1/2 hours away. I plan on getting treatment here in my town Im just not sure they have seen alot of this type of cancer here my oncologist is out of Omaha so I am sure he has seen more but the radiation part being done here by someone who may not be very familiar makes me nervous

Mabey it is I am so new to this I just am not sure who to talk to..I am thinking of getting ahold of my primary doctor to talk to him about my concerns I am not even sure if he knows of my diagosis as of yet. He is the one to refer me to the surgeon for the colonoscopy 6 months ago that I did go see but put off having done as my dad was diagnosed with prostate cancer a week later so seeing him through his surgery and recovery I had set up another colonoscopy for the 20th of January but severe bleeding on New Years Day landed me in the emergency room with a colonoscopy three days later when the tumor was found. 

The mind can do strange things to a person as I sit sometimes and think it is growing and spreading. My mind is just bouncing all over the place right now I am ready for a solid plan 

Again Thank You for your input I so appreciate I come here many times a day and read different postings I have definatly learned alot!! 

Diane

mp327

dmdrumm

Please register on the site for the National Comprehensive Cancer Network and print out the guidelines for treatment of anal cancer.  Become very familiar with them, take them with you to all appointments, and review them with all of your doctors so that you can be assured that they will be giving the right treatment to you.  I feel that they are pretty straightforward. 

Also, you really need to let your primary care doctor know all of this.  Sometimes the PC doctor can be very helpful in getting us connected with the right doctors.  Make sure all of the doctors involved in treating your cancer communicate all information to your PC doc.  Everyone involved in your case needs to know what's going on.

Martha

tanda

dmdrumm

Perhaps a consultation/opinion at a major cancer center in Omaha (Buffet Center at University of Nebraska) or Iowa or Kansas (I can't figure out what would be closer to you) would be useful.  Usually that involves a group of physicians coming together to suggest a treatment plan. (A comprehensive tumour board)  The plan could then be implemented locally. A comprehensive coordinated approach, and the ability to ask questions get explanations from a group would be helpful.

Anal cancer is fairly rare, but it is likely that large cancer centers have more experience with it than most medical centers.  Since you are already planning on going to Omaha for a needle biopsy, it might be useful  to arrange a Second Opinion appointment to set up a plan  that will be implemented locally.  I think it would ease your mind.