Cancer newbie--stage IIIA/B

Bjc57

nicotianna said:

My treatment

I think I should have gone to a place that specializes in anal cancer, such as, MD Anderson in Houston, TX.  It all happened so quickly & I did not want to be far from home so I stayed local.

I waited 3 weeks for the initial diagnostic biopsy although I had bilateral inguinal nodes.   NCCN recommends clinical trials.  I was not offered one.  My chemo/xrt was delayed 1 wk due to staffing (I think).  I rec'd the standard therapy but had mets to the lung.  I had surgery but now have recurrent lung metastasis per PET/CT.  I now have a persistent cough.

Hopefully, I will be a candidate for a clinical trial at MD Anderson for recurrent anal cancer with an immunotherapy drug, nivolumab.   The clinical investigator is Cathy Eng.

Thank you for asking!

I hope your Mom has no recurrence!

Nic

 

 

We do our best

Nic,

I am so sorry you are going through this. I, too, understand wanting the best but wanting to stay close to home. I had done some research on the NCCN site, thanks to advice on this forum, and felt immediately comfortable and confident with my oncologist when he mentioned (without my mentioning it) that he follows the NCCN protocols. Being a nurse and having many medical friends, I was lucky to have "a good word" put in for me and my treatment plan was started the very next day after my first meeting with my oncologist.

You mentioned that you had nodal involvement initially, but did the lung mets happen during the treatment delays or were they there initially? It is so upsetting to try and do all the things we are told to do to safeguard our health and then to be slapped in the face by a "brush off" or missed diagnosis or "misdiagnosis"! I had had a colonoscopy less than 3 years before with the history or internal hemorrhoids so I know that should have been checked. I have had an annual pap and, supposedly, a DRE but it was also missed last fall---I even ASKED if I had a rectocele! I actually felt a hard marble size mass after my exam. I don't know how my doctor missed it!

I hope that you will get some good followup and better treatment soon. We do what we think is best and have to trust that it's the right thing, but if something doesn't feel right, we have to be our own advocate.  I am praying you will have good news soon.

Becky

Bjc57

princess14 said:

Hi Nic,
Yes mum had a

Hi Nic,

Yes mum had a proctoscopy which is very similar unfortunately the view was impaired due to bleeding so she will be having what they call an EUA.  She will be having follow up mri's but has yet to have one since treatment has ceased. I believe they will be booking one at her next appointment. We are very fortunate in australia with our healthcare system and medicare so mum didn't have any costs associated with her treatment.

How are you finding treatment so far?

 

princess14

I hope your mum has a clear check and will be NED. I know you are concerned and she is fortunate to have you looking out for her. Please keep us informed of how she is doing.

Becky

 

Lorikat

nicotianna said:

My treatment

I think I should have gone to a place that specializes in anal cancer, such as, MD Anderson in Houston, TX.  It all happened so quickly & I did not want to be far from home so I stayed local.

I waited 3 weeks for the initial diagnostic biopsy although I had bilateral inguinal nodes.   NCCN recommends clinical trials.  I was not offered one.  My chemo/xrt was delayed 1 wk due to staffing (I think).  I rec'd the standard therapy but had mets to the lung.  I had surgery but now have recurrent lung metastasis per PET/CT.  I now have a persistent cough.

Hopefully, I will be a candidate for a clinical trial at MD Anderson for recurrent anal cancer with an immunotherapy drug, nivolumab.   The clinical investigator is Cathy Eng.

Thank you for asking!

I hope your Mom has no recurrence!

Nic

 

 

Nic..

dr. eng is awesome!  If anyone can help, she can!  God bless

 

nicotianna

Bjc57 said:

We do our best

Nic,

I am so sorry you are going through this. I, too, understand wanting the best but wanting to stay close to home. I had done some research on the NCCN site, thanks to advice on this forum, and felt immediately comfortable and confident with my oncologist when he mentioned (without my mentioning it) that he follows the NCCN protocols. Being a nurse and having many medical friends, I was lucky to have "a good word" put in for me and my treatment plan was started the very next day after my first meeting with my oncologist.

You mentioned that you had nodal involvement initially, but did the lung mets happen during the treatment delays or were they there initially? It is so upsetting to try and do all the things we are told to do to safeguard our health and then to be slapped in the face by a "brush off" or missed diagnosis or "misdiagnosis"! I had had a colonoscopy less than 3 years before with the history or internal hemorrhoids so I know that should have been checked. I have had an annual pap and, supposedly, a DRE but it was also missed last fall---I even ASKED if I had a rectocele! I actually felt a hard marble size mass after my exam. I don't know how my doctor missed it!

I hope that you will get some good followup and better treatment soon. We do what we think is best and have to trust that it's the right thing, but if something doesn't feel right, we have to be our own advocate.  I am praying you will have good news soon.

Becky

Becky

With my initial bx the gyne onc ordered a PET/CT.  That PET did not show distal mets only regional...inguinal nodes, perineum. vagina & rectal area.  Within 6 mos post XRT & chemo, something apparently showed up on a PET but not 'til 9 mos. post RX did that light up.  It increased in sz & intensity & I had a VATS procedure w/segmentectomy & lymphadenectomy @ 11 mos. post RX.  Now at 17 mos. I have several nodes in the same lung that are lit:(

I had been dx'd w/"internal hemorrhoids" 11 mos. prior to the appearance of an inguinal node after having a colonoscopy due to rectal bleeding.

I am in limbo now.  Thank you for your prayers & good wishes!

Nic

nicotianna

Lorikat said:

Nic..

dr. eng is awesome!  If anyone can help, she can!  God bless

 

Lorikat

Thank you!

Nic

 

Ouch_Ouch_Ouch

Cancer Club.

Bjc57 - Our stories have many lines of convergence even down to brushing it off (until I started to have hemorrhages) and the RN part. By the time I saw a colo-rectal surgeon, I was in pain, unable to cooperate with the digital exam. As far as he could tell, I had a thrombosed hemorrhoid and large fissure. Three weeks later, I was in the OR to get a repair when once I was out, he instantly saw the true nature of my condition. He immediately did a frozen section and took it to pathology himself so when I awoke, I had the diagnosis.

The PET/CT scan showed effected perianal nodes and was suspcious of the inguinal nodes. Although they were not biopsied, the radiation oncologist treated me as stage 3-b. I've had two 3-month follow-ups with no cancer found (though I do have dysplasia as AIN-1, parakaratosis, and chronic inflammation).

There are a number of successfully treated 3-b, even stage 4, people in this forum. As Ms Martha pointed out, there are long-term "thrivers". There are even people who have had colostomies and are doing very well. I looked at the numbers the first thing, too. But the reality is so much more encourgaing.

I had developed excrutiating fissures and anal pain during radiation and the skin of my "diaper area" sloughed off in bloody sheets. I started using Comfort Shield Barrier Cream Cloths instead of toilet paper (= sandpaper) or a spray bottle (= drying and stinging). You may have seen them at your hospital. They are pricey but soooooothing and well worth it, like rectangular clouds. Due to recurrent fissures, I'm still using them. I buy them from the manufacturer, Sage Products, through their Amazon site. I buy the larger size and cut them into 4 toilet paper sized squares.

I had a LOT of trouble with smells, mostly cleansers, plastics, strong organic smells, and the saline flush that went through the mediport (smelled like strong model airplane glue). One whiff of any of those and I was incapacitated with wretching and nausea. Since this was not the usual nausea, Zofran had no effect, even IV. A nurse who had taken classes in adjunct aromatherapy suggested peppermint oil (not the inexpensive flavoring from the supermarket, but the expensive essential oil from the health food store, naturally). What a life-saver! I had soaked cotton balls in little dishes all around me and especially in the bathroom. I hope this doesn't happen to you as it was awful and took a long time to fully resolve.

 

ADDITION: In case you haven't seen them before, the Barrier Cream Cloths are nothing like baby wipes. They are much thicker and very soothing. I know of no similar product.

lizdeli

Ouch_Ouch_Ouch said:

Cancer Club.

Bjc57 - Our stories have many lines of convergence even down to brushing it off (until I started to have hemorrhages) and the RN part. By the time I saw a colo-rectal surgeon, I was in pain, unable to cooperate with the digital exam. As far as he could tell, I had a thrombosed hemorrhoid and large fissure. Three weeks later, I was in the OR to get a repair when once I was out, he instantly saw the true nature of my condition. He immediately did a frozen section and took it to pathology himself so when I awoke, I had the diagnosis.

The PET/CT scan showed effected perianal nodes and was suspcious of the inguinal nodes. Although they were not biopsied, the radiation oncologist treated me as stage 3-b. I've had two 3-month follow-ups with no cancer found (though I do have dysplasia as AIN-1, parakaratosis, and chronic inflammation).

There are a number of successfully treated 3-b, even stage 4, people in this forum. As Ms Martha pointed out, there are long-term "thrivers". There are even people who have had colostomies and are doing very well. I looked at the numbers the first thing, too. But the reality is so much more encourgaing.

I had developed excrutiating fissures and anal pain during radiation and the skin of my "diaper area" sloughed off in bloody sheets. I started using Comfort Shield Barrier Cream Cloths instead of toilet paper (= sandpaper) or a spray bottle (= drying and stinging). You may have seen them at your hospital. They are pricey but soooooothing and well worth it, like rectangular clouds. Due to recurrent fissures, I'm still using them. I buy them from the manufacturer, Sage Products, through their Amazon site. I buy the larger size and cut them into 4 toilet paper sized squares.

I had a LOT of trouble with smells, mostly cleansers, plastics, strong organic smells, and the saline flush that went through the mediport (smelled like strong model airplane glue). One whiff of any of those and I was incapacitated with wretching and nausea. Since this was not the usual nausea, Zofran had no effect, even IV. A nurse who had taken classes in adjunct aromatherapy suggested peppermint oil (not the inexpensive flavoring from the supermarket, but the expensive essential oil from the health food store, naturally). What a life-saver! I had soaked cotton balls in little dishes all around me and especially in the bathroom. I hope this doesn't happen to you as it was awful and took a long time to fully resolve.

 

ADDITION: In case you haven't seen them before, the Barrier Cream Cloths are nothing like baby wipes. They are much thicker and very soothing. I know of no similar product.

Becky

In was Stage 3b with perirectal nodes impacted.  That was 5 1/2 years ago.  I am doing well.  Right now a million things are going through your mind, fear most likely dominating your thoughts.  Stay strong.  There is hope!  

Wishing you strength and healing.

Liz

lizdeli

nicotianna said:

My treatment

I think I should have gone to a place that specializes in anal cancer, such as, MD Anderson in Houston, TX.  It all happened so quickly & I did not want to be far from home so I stayed local.

I waited 3 weeks for the initial diagnostic biopsy although I had bilateral inguinal nodes.   NCCN recommends clinical trials.  I was not offered one.  My chemo/xrt was delayed 1 wk due to staffing (I think).  I rec'd the standard therapy but had mets to the lung.  I had surgery but now have recurrent lung metastasis per PET/CT.  I now have a persistent cough.

Hopefully, I will be a candidate for a clinical trial at MD Anderson for recurrent anal cancer with an immunotherapy drug, nivolumab.   The clinical investigator is Cathy Eng.

Thank you for asking!

I hope your Mom has no recurrence!

Nic

 

 

Nic - MD Anderson/Dr. Eng

Nic,

You will be in the hands of one of the best.  Dr. Eng is awesome.  I am here today thanks to her.  I wish you healing and strength.

Liz

horsepad

Hi Becky
I wanted to add my

Hi Becky

I wanted to add my words of encouragement.  I was diagnosed stage 4, bi-lateral lympth node involvement and  mets to liver in August 2011.  I had the usual chemo/radiation.  Was hospitalized for severe burns, chemo side effects.  I had a liver resection a few months after I finsished treatment.  A few weeks after finishing treatment, my mother died and a few weeks after that my husband committed suiciide.  During all this I have been raising two of my grandchildren.  I adopted them 18 months ago.  Other than short term memory loss (getting older plays into that), I have no side effects.  I feel great!!!  It helped me to know there were other stage 4 cancer surviviors and it was possible for me to survive.  I also put all my fears into God's hands and he was there for me every step of my journey as he will be with you.  Cancer made me a better person.  Gratitude has made me a happier person. 

mp327

lizdeli said:

Nic - MD Anderson/Dr. Eng

Nic,

You will be in the hands of one of the best.  Dr. Eng is awesome.  I am here today thanks to her.  I wish you healing and strength.

Liz

Nic

I agree with Liz about Dr. Eng at MD Anderson.  I hope you can get in to see her.

Martha