CT Scan Results:-(

sandysp said:

Who knows yet how they will do it

The Pulmonologist at Mt. Sinai said it is too dangerou to do a needle biopsy because of the proximity to my heart.

The Pulmonologist at MSKCC has his work cut out for him. His name is Dr. Robert Lee. I am from the South and we loved our Robert E Lee growing up, the General who was so fine the Industrial North had a hard time beating an agricultural "nation". Took them (us) four years and they (we) had to burn down Atlanta to do it. I now live in NY but it wasn't always that way as you can tell here.

(ha, ha!) I'm from South Carolina originally and they taught history a bit differently there than in most parts of the country. Everyone claimed to be related to Robert E. Lee back where I came from. Including my family. So I smiled when I found my doctor who is my warrier in this disease has the name of the old South's great general.

Take care,

Sandy

Just adding to the Dr. Lee stories.......my husband needed surgery to remove an infection outside of his lung last spring after complications from the flu and pnomonia. We were refered to a WONDERFUL pulmonologist also by the name of Dr. Lee!!!!! We live in the middle of Wisconsin and our Dr. Lee is of Asian decent. I wonder how that relates to the South's great General Lee?????

Hope all continues well for you.

Katheryn

sandysp said:

Thank you everyone

Hi everyone again.

I went through some medical records more carefully that I received from Mt. Sinai after they returned them to me. The records were from MSKCC that they requested but realized were not pertinent.

I can see from my records and the research I embarked upon that I was never just stage 3. I was 3b and since this small mass was already on my lung, probably IV. Staging is very tricky because you can be stage IIIb because your tumor was large or you can be IIIb because you have it in your "groins" emphasis on the plural as was in my case and "illiac node." My tumor was under 5 centimeters (although this was controversial since at the time of the biopsy it was larger) but it had invaded the rectum and lymph nodes which I just assumed were near by. My "illiac" node was referenced in my radiologists notes as being involved as well which is further up the line.

The Iliac nodes run between two arteries. Apparently according to the medical journal articles I read the possibility of distant organ metastasis is increased when the iliac nodes are involved. My husband calls it the "illiac and the oddessy." Definitely the rest of this journey will be my oddessy and his too, no doubt.

The American Cancer Society says that there is no cure for anal cancer metastases. There are means of controlling it through surgery and/or chemotherapy. 

I am very interested in meeting Dr. Lee and hearing what he has to say. Martha you are exactly right, he probably is asian and I am so happy you like the South - So do we).  But I am not actually at this point committed to having any procedures done. I am just going to give it some thought.

When I took the chemo and radiation for anal cancer it was because they said I had an 85% chance of getting well. My husband added to that "without reoccurrence" but I told him I never heard them say that. I am feeling well right now and I may want to try to enjoy the rest of my life just living with this disease as comfortably as possible. I picked up a book at the MSKCC library called Your Medical Mind which goes over how we make choices regarding our care. It seems to be helping me realize that we have choices. Just because I "need" a biopsy doesn't necessarily mean having a biopsy will change the outcome this time. I am letting this information sink in right now. Do I want a dangerous procedure at this point? I have to admit the Pulmonologist at Mt. Sinai frightened me when she said the mass is in a precarious place so close to my heart she didn't know anyone who would perform a biopsy there. I am sure Dr. Lee is very, very good, but it sounds like a risky procedure and I hate to give up what I've gained so far. Unlike when before my diagnoses I feel great. 

I am turning 65 in January and never dreamed I would live this long as it is. My grandmother used to say I'd never live to see 21 because I had an immune deficiency and was sick all the time. Now I feel well but apparently feelings aren't facts. Sorry for rambling. 

I know some of you out there have been run around by metastasis. I'd be interested in hearing what your decision would be in this case.

Fondly,

Sandy

Sandy, I so wished you weren't faced with even having to make this decision. You have been through so much and cover all your bases when it comes to research so whatever you decide I know it will be the right decision for you. In the meantime I just sent some prayers your way, hope you are healing well and happy with your facelift ! My next trip to the city is the 15th what about you ? Hope we get together again soon, you have been a rock for me through this journey, and I am here for you

sandysp said:

the 15th

Dear Lisa and Martha,

Thanks for your prayers and hugs. I am glad I got all that out of me last night. It helped me sleep. Besides, we all have to get clear about what is important at some point in our lives and need to mull with those of like mind or experience.

Lisa, I am going to Boston next week for some fun with my granddaughter who is 27 and so sweet and so smart and sooooo much fun! She lives in Seattle. She has a new special man in her life she wants us to meet whose family is from there. She and I are going to have some "girl" time and then my husband and her new special someone (Paul) is coming in town and we will all have  dinner. Then she and Paul are going up to Cape Cod on the 15th and my husband, Joel and I will come home together. (I wish I was going to Cape Cod too!) I've never been there.

But I am so happy to get this time to spend with her, expecially with my new face lift (which is looking very good by the way even if it is still annoyingly hot and itchy around the stitching). I am riding the Amtrak train which I just heard is fabulous as it runs along the water the whole way.

Good luck at your appointment. I hope you are starting to have some better days by now. There is much patience involved with recovery.

Love to both

Sandy

 

I am so excited for you!  I've never been to Boston--I've always wanted to visit there.  I hope you have a wonderful time with your granddaughter and her new significant other.  Go there, have fun, relax, and leave your worries at home!  Love and Hugs!

I've never  been to Boston either.   Enjoy your trip with family.   Glad you are recoverying well from your recent surgery.   

Blessings,

tory

sandysp said:

Thanks

I had a wonderful time in Boston. What an amazing city. It really feels to me like the nation's "heartland" as well as birthplace. The architecture blew me away. I look forward to returning some day. There was so much to see.

I have been reading a couple of books I highly recommend. One is "Your Medical Mind" and the other is "The Anatomy of Hope". 

I hope you will consider reading them. I really benefit from stories of other people and how they face their medical issues. That's one reason I benefit from everyone here.

Thanks again and keep on keeping on!

Fondly,

Sandy

 

 

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