Newly Diagnosed: My Spouse

jcruz

Jeff1 said:

Thank-you  all for the recent

Thank-you  all for the recent posts and info......We met with the surgeon this morning and Jim is having surgery tomorrow afternoon.  I'll keep you upodated on his progress.

 

Jeff

Jeff

All good thoughts for you and Jim as he moves forward in treatment

Janet

mxperry220

Jeff1 said:

Thanks for the response Mike.

Thanks for the response Mike.  Was there a reason that they didn't do chemo/radiation to begin with?

Biopsy

The gastroentrologist who performed the colonosopy and found the tumor did not take enough tissue to confirm that the tumor was cancer.  My colorectal surgeon then performed the procedure to obtain more tissue and decided to remove as much of the tumor as possible without compromising my spincter muscle.  I asked my radiologist what this meant and he said it just meant they would have to use less radiation to eradicate the remaining portion of the tumor. 

Mike

Jeff1

jcruz said:

Jeff

All good thoughts for you and Jim as he moves forward in treatment

Janet

Sorry for the lack of

Sorry for the lack of updates.  I was waiting for Jim's latest biopsy results which he received today.

After successful surgery in which 4 lesions were removed on 2/13.......Jim was informed today that biopsy results indicated the same thing that his original biospy indicated.......AIN 3 (or Squamous Cell Carcinoma In Situ).  He talked with his colorectal surgeon about how to proceed and more surgery was mentioned however we know someone who had radiation done (as well as surgery)......she said that she would converse with other doctors and come up with a plan.  Even though Dana Farber is one of the top cancer centers......they are being conservative (following protocol?) in their approach to Jim's situation IMO.  I know that it is a conundrum as it is not invasive (which would be radiation and chemo without question)......but I'm not sure that more surgery is the answer at this point either.  He has an appointent with the surgeon on 4/1......I'm assuming that she will look at the area to see what everything looks like.......and then I'm guessing a visit every 3 months to determine what is going on(?).

Don't get me wrong......we are very happy that there is no invasive diagnosis at this point.......but it is also difficult to determine the next step and have that hanging over your head as well.

Thoughts?  Opinions?

Thanks,

Jeff

 

mp327

Jeff1 said:

Sorry for the lack of

Sorry for the lack of updates.  I was waiting for Jim's latest biopsy results which he received today.

After successful surgery in which 4 lesions were removed on 2/13.......Jim was informed today that biopsy results indicated the same thing that his original biospy indicated.......AIN 3 (or Squamous Cell Carcinoma In Situ).  He talked with his colorectal surgeon about how to proceed and more surgery was mentioned however we know someone who had radiation done (as well as surgery)......she said that she would converse with other doctors and come up with a plan.  Even though Dana Farber is one of the top cancer centers......they are being conservative (following protocol?) in their approach to Jim's situation IMO.  I know that it is a conundrum as it is not invasive (which would be radiation and chemo without question)......but I'm not sure that more surgery is the answer at this point either.  He has an appointent with the surgeon on 4/1......I'm assuming that she will look at the area to see what everything looks like.......and then I'm guessing a visit every 3 months to determine what is going on(?).

Don't get me wrong......we are very happy that there is no invasive diagnosis at this point.......but it is also difficult to determine the next step and have that hanging over your head as well.

Thoughts?  Opinions?

Thanks,

Jeff

 

Jeff

This is definitely a tough position to be in--knowing that the potential for development of cancer exists, but yet not to that point and no recommendation, other than a wait and see approach.  However, this seems to be the correct protocol for AIN 3.  Please keep us posted and let us know how the appt. on April 1st. goes.  I am thinking all good thoughts for you both!

Martha

qv62

Jeff1 said:

Sorry for the lack of

Sorry for the lack of updates.  I was waiting for Jim's latest biopsy results which he received today.

After successful surgery in which 4 lesions were removed on 2/13.......Jim was informed today that biopsy results indicated the same thing that his original biospy indicated.......AIN 3 (or Squamous Cell Carcinoma In Situ).  He talked with his colorectal surgeon about how to proceed and more surgery was mentioned however we know someone who had radiation done (as well as surgery)......she said that she would converse with other doctors and come up with a plan.  Even though Dana Farber is one of the top cancer centers......they are being conservative (following protocol?) in their approach to Jim's situation IMO.  I know that it is a conundrum as it is not invasive (which would be radiation and chemo without question)......but I'm not sure that more surgery is the answer at this point either.  He has an appointent with the surgeon on 4/1......I'm assuming that she will look at the area to see what everything looks like.......and then I'm guessing a visit every 3 months to determine what is going on(?).

Don't get me wrong......we are very happy that there is no invasive diagnosis at this point.......but it is also difficult to determine the next step and have that hanging over your head as well.

Thoughts?  Opinions?

Thanks,

Jeff

 

Jeff1

Sorry to hear both you and Jim have to go through this, I had countless insitu tumors removed for five years prior to treatment and a major surgery that included skin graphing and some reconstruction and doctors orders not to sit for 6 weeks after  a week of hospitalization so I can see where you would opt for treatment but given the reaction I had when my tumor was invasive I'm not sure what I would do over. I remember when my colorectal told me the treatment was needed I said "can't we just do another surgery ? " I am a fear of the unknown type. I was scheduled to be checked every 3 months when I was insitu but there were many times I had to make earlier appts knowing it was back and I was always right. I knew when the tumor was back. I hope you both get all the facts you need, please feel free to reach out with any specific questions I can answer, I know how frustrating it is to wait....

tanda

Newly daignosed my spouse

Jeff,

Perhaps another opinion, from a team at another major cancer center might give you more confidence in the  treatment plan being suggested at Dana Farber.  Since you are on the east coast, ,

you might be able to get a consultation at Sloan kettering

Good luck....you are in a gray area and I can appreciate a decision is almost between a rock and a hard place.

 

Tanda. 

Jeff1

tanda said:

Newly daignosed my spouse

Jeff,

Perhaps another opinion, from a team at another major cancer center might give you more confidence in the  treatment plan being suggested at Dana Farber.  Since you are on the east coast, ,

you might be able to get a consultation at Sloan kettering

Good luck....you are in a gray area and I can appreciate a decision is almost between a rock and a hard place.

 

Tanda. 

Thank-you for your

Thank-you for your suggestion.  We are meeting with the surgeon for a 6 week follow-up on April 1.  We might get a second opinion at the Alfond Cancer Center in Maine.  We have a friend who has gone through similar and had radiation treatment there.

 

Jeff

analc survivor

hi Jeff1, I hope your spouse

hi Jeff1, I hope your spouse is through treatment by now and is beginning the recovery process. I was diagnosed in Aug 2013, and live in Maine also. I had my treatment through Maine Medical and Southern Maine Medical. Once we survive the treatment now we need to treat the side effects. I would like to get a group together here in Maine. There is a lot of things we can do to fight this rare cancer and continue to be cancer free, and we need to make our voice heard. It is not easy, but with many of us as one it can happen I think. In the meantime, I can be reached at a survivor at gmail dot com. I would love to send both you and your spouse an anal cancer survivor bracelet. It's a start! Best wishes, analc survivor

Nona12

mxperry220 said:

Colorectal Surgeon

I urge you to contact a colorectal sugeon for treatment of anal cancer if you have not already done so.  They are most familar with this type of cancer.  I was diagnosed with Stage 2 anal cancer in 2008.  My colorectal surgeon removed 1/2 of my tumor prior to treatment then I received the standard chemo and radiation treatments.  He coud not remove all of the tumor due to the fact it was near my spincter muscle.  For me the extraction was the most painful part of the whole process.

Mike

Radiation side effects

Did you have any hip or bone pain in the hips during radiation treatment and if so, what helped relieve it?  My husband is half way through is treatments of 30.  He is in severe pain and they are giving him NSAIDS, and don't think they pain is from the radiation but it only started the past week, he hasn't had it before.

 

Judy

Kelleb

Jeff1 said:

Sorry for the lack of

Sorry for the lack of updates.  I was waiting for Jim's latest biopsy results which he received today.

After successful surgery in which 4 lesions were removed on 2/13.......Jim was informed today that biopsy results indicated the same thing that his original biospy indicated.......AIN 3 (or Squamous Cell Carcinoma In Situ).  He talked with his colorectal surgeon about how to proceed and more surgery was mentioned however we know someone who had radiation done (as well as surgery)......she said that she would converse with other doctors and come up with a plan.  Even though Dana Farber is one of the top cancer centers......they are being conservative (following protocol?) in their approach to Jim's situation IMO.  I know that it is a conundrum as it is not invasive (which would be radiation and chemo without question)......but I'm not sure that more surgery is the answer at this point either.  He has an appointent with the surgeon on 4/1......I'm assuming that she will look at the area to see what everything looks like.......and then I'm guessing a visit every 3 months to determine what is going on(?).

Don't get me wrong......we are very happy that there is no invasive diagnosis at this point.......but it is also difficult to determine the next step and have that hanging over your head as well.

Thoughts?  Opinions?

Thanks,

Jeff

 

In situ

i am so glad that your spouse's cancer was in situ. I also had surgery in 2010 for anal cancer, in situ, very close to the line. 2 surgeries gave clean margins & healing was normal.

Unfortunately, I have just finished treatment for anal cancer. Almost exactly 5 years to the day, I was diagnosed with anal cancer again. 1 metastaic tumor, stage 1-2, and 2 precancerous nodules. There is not really any research done that discusses a recurrence rate. 

So, I'm sure y'all are hyper-aware now of ANY unusual activity in that area. Keep it that way! If any bleeding, etc. starts - have it checked. the earlier they catch it, the better!

Wishes for continued health!

xokb