Ampullary Cancer (Ampulla of Vater)

tuza
tuza Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
Hello everyone.

My mother (56) was diagnosed with Ampullary Cancer, and she has undergone Whipple procedure (pancreatoduodenectomy) 2 months ago, and is getting ready to start with chemo and radio treatment.

From the beginning, none of this made any sense:
- she's non-smoker (though our father was a smoker, but they divorced 7 years ago)
- she's non-drinker
- she wasn't obese, on the contrary, she had very healthy life with lot of physical activity + proper food with lots of vegetables, fruits and her blood samples always showed that everything is in fine order
- we didn't have any cancer history in family from either her's or father's side

Her problems started in summer 2008 when she had seizure, and doctor said to her that she has sand in her gall bladder and stone in her kidney. I'm not even sure if that's possible, but she was prescribed some mixtures to drink which did smooth down her pain, so we thought it was over.

Then, summer 2009, pains were back, and she went to see other doctor, who told her that she has nothing in her kidney at all, and that she has stone forming in her gall bladder. She went to other doctor who then said she has nothing.

Things got messy at December 2009 when she went yellow. She was hospitalized and she had laparascopic removal of gall stones and she felt better. However, doctor who did removal took sample of some sort of greasy substance for further analysis. She was called at February 2009 for second sampling for biopsy, and later at March 2009 she got diagnosed by assembly of doctors with

Adenocarcinoma Papillae Vateri (T1N0M0).

Soon we successfully found a doctor who did Whipple procedure 8.4.2010 and after that she went on the road of recovery.

I took as much time as I had to get myself familiar with all what has happened, and T1N0M0 sounded like lucky shot in series of unfortunate events. Mother was recovering rapidly, pain, jaundice and food intolerance was gone in <1 month, and she now looks as healthy as she was before surgery.

Then, 5 days ago, we got results from patohistology and they are completely different from what was diagnosed at the start. PH results are:

Adenocarcinoma gradus II/III papillae Vateri pT4 N1 Mx R0
Adenocarcinoma metastaticum lymphonodorum (IV/IV)
Pancreatic Intraepitelial Neoplasm PanIN 1/2
Pancreatitis Chronica
Gastritis at deuodenitis chronica

According to that, stage of tumor is 3/4 and lymph nodes have been severely invaded, which makes original diagnose completely wrong.

Now I wonder, how is it possible that only in ~1 month of time, tumor goes from T1N0M0 to T4N1Mx? Could it be it's that rapid? Since they've written in 1st analysis that it didn't touch wall of duodenum, but now it says it did, and it went quite into pancreas itself.

If anyone has had this kind of cancer with symptoms close like this, I would really like to hear some thoughts about what kind of prognoses we have, since, lymph nodes are involved, but on the other hand resection rate seems good (no tumor tissue has been left in nearby organs).

Also, I have a theory, that I don't even know if is possible. Considering she had almost 0% usual factors that cause this kind of tumor to occur, I'm worried (or should I say hoping) that all this was caused by chronical pancreatitis, we didn't even knew she had until PH results came. Could it be that her chronical gastritis on duodenum spread on pancreas and caused chronical pancreatitis, and due to wrong function of pancreas, it caused faulty enzymes to produce which resulted in appearence of mutated cells on ampulla?
If that is a case, what are the chanced that now after pancreatitis has been not present anymore, and that tumor tissue is gone, pancreas won't make another same thing in what's left of that periampullary zone?

Thanks for all responses, and I'm sorry for long post, but there is so much to write.

Comments

  • Canadian_1
    Canadian_1 Member Posts: 1
    #2
    Ampulla of Vater Cancer
    My husband got this cancer in 1993. He had a Whipple's procedure and has been cancer free since. It will be 20 years in February. He was only 42 years old when diagnosed and a fire fighter. His symptoms were basically jaundice and feeling that he had the flu. He had 3 lymph nodes that were +ve for adenocarcinoma. Sometimes there are no known causes or risk factors...it just happens, but it can have a happy ending. Best wishes.
  • gailfsu
    gailfsu Member Posts: 1
    #3
    Canadian_1 said:

    Ampulla of Vater Cancer
    My husband got this cancer in 1993. He had a Whipple's procedure and has been cancer free since. It will be 20 years in February. He was only 42 years old when diagnosed and a fire fighter. His symptoms were basically jaundice and feeling that he had the flu. He had 3 lymph nodes that were +ve for adenocarcinoma. Sometimes there are no known causes or risk factors...it just happens, but it can have a happy ending. Best wishes.

    my brother has this kind of cancer

    we are just staying positive and I appreciate this site.

  • John21
    John21 Member Posts: 4
    #4
    Ampullary Cancer

    I  was diagnosed with Ampullary Cancer in Nov '12 and had  Whipple Prodedure on Dec 3. There was a cancer cell in one of my lymph nodes andnow on treatement at Dana Farber in Boston. So far chemo treatment is not too difficult, but was not able to complete my 5 session because white blood cells were too low. I will be recieving 12 treaments prior to 5 weeks of radiation. Not sure how they missed the tumor....sometimes it depends on the speciality/expertise of the hospital and doctor. Stay position

  • slynnda78
    slynnda78 Member Posts: 1
    #5
    Ampullary Cancer

    I'm writing because my mother was diagnosed with Ampullary Cancer in October 2008 and had the whipple in December 2008.  It was followed by radiation and chemo pills.  She has had relatively clean scans since then, with the exception of going under the knife last year to remove some fatty tissue in the stomach area last year.  It appeared on her routine scans and her doctors did not want to chance it being a tumor.  I was compelled to write because want to give hope to those who are battling this disease right now.  My mother will be 66 years old and I'm so very grateful to still have around, she is back at work, and only takes medication with meals to prevent "dumping".   Going on 5 years now and thanking God every day.  Be encourage through this journey, a positive attitude will definitely help with your recovery and healing.  Praying for you all.

  • shelbelle0123
    shelbelle0123 Member Posts: 4
    #6
    John21 said:

    Ampullary Cancer

    I  was diagnosed with Ampullary Cancer in Nov '12 and had  Whipple Prodedure on Dec 3. There was a cancer cell in one of my lymph nodes andnow on treatement at Dana Farber in Boston. So far chemo treatment is not too difficult, but was not able to complete my 5 session because white blood cells were too low. I will be recieving 12 treaments prior to 5 weeks of radiation. Not sure how they missed the tumor....sometimes it depends on the speciality/expertise of the hospital and doctor. Stay position

    John21
    I too was diagn with

    John21

    I too was diagn with Amullary cancer in Nov '12 and I am curious as to what treatment plan they have you on.  Mine was stage 1A adeno.

     

  • shelbelle0123
    shelbelle0123 Member Posts: 4
    #7
    slynnda78 said:

    Ampullary Cancer

    I'm writing because my mother was diagnosed with Ampullary Cancer in October 2008 and had the whipple in December 2008.  It was followed by radiation and chemo pills.  She has had relatively clean scans since then, with the exception of going under the knife last year to remove some fatty tissue in the stomach area last year.  It appeared on her routine scans and her doctors did not want to chance it being a tumor.  I was compelled to write because want to give hope to those who are battling this disease right now.  My mother will be 66 years old and I'm so very grateful to still have around, she is back at work, and only takes medication with meals to prevent "dumping".   Going on 5 years now and thanking God every day.  Be encourage through this journey, a positive attitude will definitely help with your recovery and healing.  Praying for you all.

    So very glad you wrote this! 

    So very glad you wrote this!  I had the same cancer just this past nov '12 and it was stage 1A with noknown invasion to lymph or panc.  I had a terrible time on the xeloda chemo pill/radiation 6 wk combination torcher, and after it has ben over for 5 weeks. NOW my hair is falling out.  I am just now 53 and was the absolute picture of a health nut prior to this in both eatting habits as well as taking care of myself.  No family history of cancer on either side, and never have even tried a cig in my life.  So lost and confused  like I am the only living soul left on the planet with this.  The drs say Im cancer free, but I pray my sceptisim will go away.  May I ask you how long did the radiation aching last in her mid section?  Thank you for writting this and your prayers and I hope to hear from soon. 

  • stanbrook87
    stanbrook87 Member Posts: 1
    #8
    slynnda78 said:

    Ampullary Cancer

    I'm writing because my mother was diagnosed with Ampullary Cancer in October 2008 and had the whipple in December 2008.  It was followed by radiation and chemo pills.  She has had relatively clean scans since then, with the exception of going under the knife last year to remove some fatty tissue in the stomach area last year.  It appeared on her routine scans and her doctors did not want to chance it being a tumor.  I was compelled to write because want to give hope to those who are battling this disease right now.  My mother will be 66 years old and I'm so very grateful to still have around, she is back at work, and only takes medication with meals to prevent "dumping".   Going on 5 years now and thanking God every day.  Be encourage through this journey, a positive attitude will definitely help with your recovery and healing.  Praying for you all.

    Thank you for your message

    Thank you very much for your message. It is so nice to read something positive and optimistic about ampullary cancer for a change. My father is 66 years old and was diagnosed with ampullary cancer in August and was meant to have a whipple surgery but in the end had a slighlty altered version of it, as he needed to have his entire pancreas removed. He is still going through chemo at the moment but is understandly struggling with it all, and is not quite himself. I would love for him to be able to speak to someone about it who has been through it as I think it would help him a great deal. As your mother went through this, do you know if she was able to speak to anyone about it who had been through the same experience? And I am sorry if this is inappropriate to ask, but do you think she would mind sharing her positive experience with my dad? I do understand if she would rather not or if you don't think this would be appropriate but I couldn't help but ask. 

    I would also like to reach out to anyone who has had ampullary cancer and who would perhaps be willing to share their experience with my dad. He had prostate cancer about 10 years ago which he thankfully recovered from and at that time he spoke to someone who shared their experience with him and it helped him so much. As he went through radiation, and even after he was cured, he continued to speak to people who were going through treatment for prostate cancer as he knew how comforting it had been to him.

    Thank you all, 

    Isabella

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