Anal cancer stage 3b

nicotianna said:

anal cancer IIIb

Marie, Martha, Tory & QV - Marie I have a hx in My Space.  I had bilateral inguinal nodes involved.  I am sad to report that my PET/CT scan on 7/21 was not good.  I now have a 10 mm nodule w/greater intensity in the rt. lung & a rt. hilar node showing hypermetabolism.  There is hypermetabolism in the rt. inguinal area of a "seroma" after a node was removed for pathology in Jan. Some hypermetabolism is noted in the inf. area of the vagina not noted on my previous report but is the same as before.  I had a bx of the inguinal node/"seroma" yesterday.  I will meet w/my oncologist to discuss a plan on 7/30.  I think it will be chemo.  I do not think that the inguinal node/seroma nor the vagina is a met.  I am petrified of the hilar node.  I am sorry to discourage anyone fighting this cancer.

Nic 

The only thing I caught here that I understood was Hiliar node. Mine on my right lung is lit up also, but they say it's just doing it's job fighting off infection and not to worry.

I had inguinal node involvement in my original diagnosis (I just looked all thisup since you made me curious). That is a bit trickier than most of the nodes, from what I understand in that it is close to some artieries but it doesn't mean that we are doomed or anything. 

I have lung issues also and will let you know how my meeting with the Pulmonologist goes on September 8th. My Oncologist thinks I at this point need a biopsy. My lung seems to be collapsing where the cystic mass that just grew again is, very close to my heart. So I guess we are both scared right now. Most of my right lung seems to be affected by something or another right now. The bottoms seems to have chronic pneumonia, the hilliar is lit up and the inside portion of the right lung has a mass that is still small but cystic and growing.

Let's just keep posting. Looks like we are going through something like the same thing at the same time. I am three years post tx but we have been watching this since day one. I never got to be NED because of it.

It sounds like you are not as afraid of the vaginal involvement. I had a multiple tumors in my pelvic bowel when I was first diagnosed but they were all benign. Lucky for me. One of them was 7 cm by 5 cm by 9 cm! Arghhh! What a monster. I am truly lucky to be alive with all those tumors so close together. The anal cancer was the only invasive tumor.

All the best,

Sandy

sandysp said:

Hiliar node

The only thing I caught here that I understood was Hiliar node. Mine on my right lung is lit up also, but they say it's just doing it's job fighting off infection and not to worry.

I had inguinal node involvement in my original diagnosis (I just looked all thisup since you made me curious). That is a bit trickier than most of the nodes, from what I understand in that it is close to some artieries but it doesn't mean that we are doomed or anything. 

I have lung issues also and will let you know how my meeting with the Pulmonologist goes on September 8th. My Oncologist thinks I at this point need a biopsy. My lung seems to be collapsing where the cystic mass that just grew again is, very close to my heart. So I guess we are both scared right now. Most of my right lung seems to be affected by something or another right now. The bottoms seems to have chronic pneumonia, the hilliar is lit up and the inside portion of the right lung has a mass that is still small but cystic and growing.

Let's just keep posting. Looks like we are going through something like the same thing at the same time. I am three years post tx but we have been watching this since day one. I never got to be NED because of it.

It sounds like you are not as afraid of the vaginal involvement. I had a multiple tumors in my pelvic bowel when I was first diagnosed but they were all benign. Lucky for me. One of them was 7 cm by 5 cm by 9 cm! Arghhh! What a monster. I am truly lucky to be alive with all those tumors so close together. The anal cancer was the only invasive tumor.

All the best,

Sandy

I SO hope your lung issues turn out to be benign.  I'm so glad you have a doctor who is confident that he can get a biopsy, despite the close prximity to your heart and I pray that all will go well.  I know you'll keep us posted.  Hugs to you, my sweet friend! 

Angela_K said:

Good news

Words of encouragement: I am 3 and 1/2 years post treatment and I am doing very well.  Was diagnosed as a probable IIIB.  Will have no more scans unless there are symptoms.  Have been very focused rejuvenating my immune system by regular fasting, follwing the BALi diet designed by Dr. Roby Mitchell, injesting black seed oil, exercising and following a meaningful spiritual path.

I feel great.  I still tire easily on some days, though.  The key, I believe, is finding a doctor who is experienced in treating women and cancer recovery and prevention.  Hormonal balance plays a HUGE role in optimizing your immune system.

You are the captain of your ship.  You will learn that you are much stronger than you think you are.

Blessings to you.  

Angela

I will look into your diet but I have been fasting too, off and on and find it is the one way to "reboot" my digestive system. I feel so fantastic when I just give everything the rest it needs and deserves.

I also have been on a spiritual path.

And, I have been doing Bikram Hot Yoga and loving it.

But I had this spot on my lung and follow up scans have revealed that things are not going as well as they seem to be going. 

Maybe you are doing the right thing by just not knowing too much. If it didn't get done, it didn't get done. We need to spend our lives with as much joy in the moment as possible no matter what.

I never dreamed I would be pain free like I am. It is like I have been reincarnated. I so appreciate that we could drive into the city, I could see a complete musical and drive home with no pain! I couldn't be in a car for 15 minutes or sitting anywhere for 15 minutes without sciatic type pain before. So my treatment was definitely worth it.

I did not realize you were IIIb. You were always there for me when I was in treatment. I only realized this week that I was definitely IIIb because the doctors told me it didn't matter, I was going to get well. 

I am glad they got me to focus on that because right now I feel well and am glad to hear you do too.

Love,

Sandy

knolltop said:

Nic

So glad to hear the inquinal was negative.    It sounds like you have many good people working together to give you good results of these issues.

Had CT Scan on the 31st  - results showed another tumor popped up inferior to the other one....this one small too, 4 mm.     Going to see oncologist on Monday- Aug 4th.    Hoping he will shed some light on my situation.    Both are still to small to biopsy, but I'm starting to have a little bit of anixiety waiting. ....   I think the best way is removal....but with a new one in 3 months....maybe chemo too.   Will post again after my visit with my oncologist.

Prayers and Good Thoughts headed your way.

Tory

Hi Tory -  Sorry to learn of the new tumor:(  Curious as to why the thoracic surgeon just does not remove them?  Will your insurance pay for a PET?  I am certain the wait is very difficult.  My thoughts are with you. Will keep you posted on my upcoming RUL VATS segmentectomy & mediastinal lymph node resx on 8/20.

Nic

nicotianna said:

Hilar node

Hi Pals - The update on me:  my PET/CT scan of 7/21 showed the hilar node lit & increased sz & intensity of RUL nodule; lit up area in rt. inguinal node & vagina.  Biopsies of vagina & inguinal node negative.  Plan:  RUL VATS segmentectomy & mediastinal lymph node dissection.

So happy not to have more chemo.  I feel great!  If I did not have the PET/CT I do not know if a plain CT would have picked this up.  The pulmonologist said the hilar node is close to the pulmonary artery but pretty sure he said that all of the lung nodes are close to the pulmonary artery.

It must be difficult for you, Sandy, to wait 'til 9/8, to see what the pulmonologist has to say.  Keep me posted.

Nic  

Will be praying for you.   I'm still playing the waiting game.   Went to pulmonologist and he found one on left side now that the radiologist didnt' pick up.   Two small to biopsy and can't do branchoscopy either.   So will be going for another CT end of September = Pulmonologist want scan cuts at 1 mm rather than 5 mm and this time with contrast.... He said contrast will help to check out nodes.   Haven't talked with oncologist since I saw Pulmonary doc.   A PET scan woundn't help me due to size.   I'm starting to get scared with these new things poping up, but they said it may not be cancer.   Will not know until biopsy.   I am in limbo.

Please let us know when you will be have VAT.   You have family and friend helping when this procedure occurs?

Blessings of Healing,

tory

knolltop said:

Nic

Will be praying for you.   I'm still playing the waiting game.   Went to pulmonologist and he found one on left side now that the radiologist didnt' pick up.   Two small to biopsy and can't do branchoscopy either.   So will be going for another CT end of September = Pulmonologist want scan cuts at 1 mm rather than 5 mm and this time with contrast.... He said contrast will help to check out nodes.   Haven't talked with oncologist since I saw Pulmonary doc.   A PET scan woundn't help me due to size.   I'm starting to get scared with these new things poping up, but they said it may not be cancer.   Will not know until biopsy.   I am in limbo.

Please let us know when you will be have VAT.   You have family and friend helping when this procedure occurs?

Blessings of Healing,

tory

Tory - I think the PET is good for identifying increased metabolism (as a sign of ca) in a specific area & it also grades the intensity.  It is called SUV.  I do not have any radiology resources but just know this from reading my reports and this site.

My thoughts are w/you.  Wishing you the best!  Waiting is so tedious.

Nic

sandysp said:

Fasting

I will look into your diet but I have been fasting too, off and on and find it is the one way to "reboot" my digestive system. I feel so fantastic when I just give everything the rest it needs and deserves.

I also have been on a spiritual path.

And, I have been doing Bikram Hot Yoga and loving it.

But I had this spot on my lung and follow up scans have revealed that things are not going as well as they seem to be going. 

Maybe you are doing the right thing by just not knowing too much. If it didn't get done, it didn't get done. We need to spend our lives with as much joy in the moment as possible no matter what.

I never dreamed I would be pain free like I am. It is like I have been reincarnated. I so appreciate that we could drive into the city, I could see a complete musical and drive home with no pain! I couldn't be in a car for 15 minutes or sitting anywhere for 15 minutes without sciatic type pain before. So my treatment was definitely worth it.

I did not realize you were IIIb. You were always there for me when I was in treatment. I only realized this week that I was definitely IIIb because the doctors told me it didn't matter, I was going to get well. 

I am glad they got me to focus on that because right now I feel well and am glad to hear you do too.

Love,

Sandy

Hello, sandysp:

1. I doubt that my insurance company would approve of Sloan-Kettering for even a second opinion. I've heard of others who were denied the privelage of going there, too, by their insurance companies.  Was it difficult for you to get approval?

2. My best friend had lung cancer metastasized to her brain. She went to S-K right off the bat and began treatment. However, one her other friends had the bright idea that she should get treatment close to her home at a medical center in northern NJ. They completely changed the treatment plan. When she lost her vision in the week before Christmas, we couldn't get her MD to return her call for several days (traveling). And then it was only to say to go to the closest emergency room to see someone who didn't know her and who didn't have her records. She died less than a month later from brain bleeds, 6 months after diagnosis. I know that lung cancer, especially metastasized, frequently doesn't have a long survival rate, but I can only wonder about the outcome if she continued at S-K. Maybe her death would have been easier, at least.

3. Are those adjunct therapies (diet, Bikram yoga, etc) ones that were suggested by your S-K team?

Thank you.

knolltop said:

Nic

Will be praying for you.   I'm still playing the waiting game.   Went to pulmonologist and he found one on left side now that the radiologist didnt' pick up.   Two small to biopsy and can't do branchoscopy either.   So will be going for another CT end of September = Pulmonologist want scan cuts at 1 mm rather than 5 mm and this time with contrast.... He said contrast will help to check out nodes.   Haven't talked with oncologist since I saw Pulmonary doc.   A PET scan woundn't help me due to size.   I'm starting to get scared with these new things poping up, but they said it may not be cancer.   Will not know until biopsy.   I am in limbo.

Please let us know when you will be have VAT.   You have family and friend helping when this procedure occurs?

Blessings of Healing,

tory

Hi Tory - I am confused as to why size makes a difference on PETS.  I would think that a change in size & increased intensity would indicate ca.  I am learning.

I had surgery 8/20 & I am home 2 das. later  I had a RuL VATS apical & posterior segmentectomy.  I am not sure what all that means but the nodule & about 5 nodes were removed.  The path report is pending.  Not sure if this is a met or a primary.  It is probably a met.  I feel great!  I have f/u in 4 weeks w/the thoracic surgeon & my oncologist.  The surgeon will call next week with the path report.

Thanks to you, Sandy, Martha, Mike QV & everyone here

Nic

nicotianna said:

VATS

Hi Tory - I am confused as to why size makes a difference on PETS.  I would think that a change in size & increased intensity would indicate ca.  I am learning.

I had surgery 8/20 & I am home 2 das. later  I had a RuL VATS apical & posterior segmentectomy.  I am not sure what all that means but the nodule & about 5 nodes were removed.  The path report is pending.  Not sure if this is a met or a primary.  It is probably a met.  I feel great!  I have f/u in 4 weeks w/the thoracic surgeon & my oncologist.  The surgeon will call next week with the path report.

Thanks to you, Sandy, Martha, Mike QV & everyone here

Nic

I thibk doc said,  it may not give a true reading because of the size...Was wondering if any one else would know.   However the new spot in left lung  looked bigger and the next time I talk with oncologist, I will ask him about PET on that spot.   The original one did not change in size, but another one popped up below it.    And then the new left lung thing - - spot.  That area looked so different than the other two.    The pulmonologist didn't think this new spot on left was cancer.   But until a biopsy, it is all a guessing game.

Thank you for letting us know how you are doing.   I'm so happy the surgery is behind you and you are recoverying well.  Hope you are not in to much discomfort.  And hoping you have family and friends to help you at this time.    Let us know the results when you get them.  Rest up and know prayers continue for you.

Tory

horsepad said:

I received the standard

I received the standard treatment-radiation for 6 weeks and chemo mix of mitomycin & 5FU.  I was supposed to receive an additional 2 weeks booster radiation but because of my hospitalization I couldn't receive it.  I was severly burned, my oncologist at Cleveland Clinic said he had never seen anyone burnt as bad as me but that was good because it meant the more cancer cells eliminated.

 

Clovergir-I am at the Clinic on 8/4 as well!  I have CT scan and meet with oncologists afterwards for the results.  I'll be there all afternoon.  How about you?

 

 

horsepad, how are you?  I too, received 6 wks of radiation (Kranyak) and the chemo mix of mitomycin then 5 FU (Haddad).  I went to Mole Center in Fairview, was severely burned like you with hospitalization prior to the last couple of appointments.  I think I am doing ok, so have slight bleeding on tissue with BM's, I think perhaps the radiaton changes cause the slight bleeding.  I see a Dr. Williams in October and will discuss this with him.