3rd recurrence, tell me will be ok

swood9008
swood9008 Member Posts: 116 Member

Hi all, I feel awful I don’t post or check on everyone more often since this group has gotten me through  so much. My mom was originally diagnosed 1/15 stage 2 anal cancer treated with protocol, 2/17 symptoms coming back diagnosed with recurrence treatend  Apr colostomy things were ok. Mom was having some issues with her urine and holding it. She went for a pet scan in June of 2018 and jan of this year 2019 all clear. She had mri tues for the urine issue and are saying a 5cm tumor on vaginal wall excus emy language how the f**k happen! Looking for  positive vibes and anyone with a similar situation. Team is meeting tomorrow for next steps 

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Comments

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Swood

    I’m so sorry you have reason to be back on the site. I have no answers for you or experience with recurrence. I’m just so sorry after all your mom has been through now this. There are times when life is not fair and this seems like one of them. Please let us know how she is doing and what the team says.

  • swood9008
    swood9008 Member Posts: 116 Member
    These were all 2 years apart 

    These were all 2 years apart 

  • eihtak
    eihtak Member Posts: 1,473 Member
    swood9008....

    Hi,

    I'm so sorry your mom is dealing with all this and I know how emotionally exhausting this can be on top of all else! If I'm understanding correctly her original diagnosis was in 2015, then a local (same area) recurrance in 2017, and now (2019) a tumor on the vaginal wall. Treatment varies depending on location as well as the make-up of the cancer cell.

    I was initially dx with anal cancer stage 3b in 2011. In 2012 dx with breast cancer. In 2015 anal cancer metastasis to my lung (so still the anal cancer cell but it had moved to my lung) and last fall in 2018 another anal cancer metastasis to a different area near the lung called the hilum. Each of my treatments were different yet some included parts of the same. While my dodctors were quite convinced that my most recent recurrance was anal cancer (in the hilum) I did request a biopsy to be sure. The treatment was radiation so may not have mattered but I wanted to know if it was anal, breast, or a 3rd primary cancer. 

    I was scanned as follow-up last week and for now at least...no new areas of concern! Yay!! I feel great and surely pray that your mom will tackle this and be saying the same soon! I too have an ostomy as a result of my first treatment so we have that in common as well.

    Its a vicious cycle, cancer and its treatment. When our immune system is run down we become even more susceptible to all sorts of things. My initial tumor in 2011 was not tested for HPV but the 2 lung area recurrances were and they were positive for such. This is a tricky virus and still being studied in depth.

    In your moms case, I am curious if the doctor believes it to be anal cancer or a secondary cancer and what treatment is recommended. I think that many things are a factor in how fast and how well we recover and some of what works is unique to each person. You have every right to be positive and assume that your mom has health in her future so don't let your mind get the best of you with anger and worry. I am currently planning a fun family beach vacation later this summer, and I've had days when I couldn't plan on eating the next meal, and everything in between...I will plan also to keep you both in my prayers for healing.

    Please keep us posted as you learn more and know that we will be here to get through this with you. 

    katheryn

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008

    I am so sorry that your mom has another cancer.  She has already been through the wringer.  I don't know what to say, other than let you know that I am sending positive wishes for your mom.  Please keep us posted and let us know what the mri shows and the plan for treatment.  We are all here to support you!

  • swood9008
    swood9008 Member Posts: 116 Member
    Thank you ladies, I don’t

    Thank you ladies, I don’t want to bring a damper to this page for anyone early in treatment, they are saying this is a very rare scenario. They are saying it’s the Anal cancer that she must have had dorment cells. I’m so angry no one saw this on the pet scan 3 months ago!!!

  • swood9008
    swood9008 Member Posts: 116 Member
    Hey ladies team called today,

    Hey ladies team called today, appt with chief of Obgyn at Brigham and women’s tuesday, port weds. Biopsy later in the week. Discussion radiation seeds or implants next week. Want to hold off on May surgery 

  • eihtak
    eihtak Member Posts: 1,473 Member
    swood9008 said:

    Hey ladies team called today,

    Hey ladies team called today, appt with chief of Obgyn at Brigham and women’s tuesday, port weds. Biopsy later in the week. Discussion radiation seeds or implants next week. Want to hold off on May surgery 

    swood9008....

    Thank you for the update. Im glad that things are happening right away as the waiting game is never fun. I have no personal experience with the radiation seeds but have read some information regarding this method and the benefit of saving surrounding tissue from damage often caused by external radiation. 

    Please let us know what you learn moving forward, and I will continue to keep you and your mom in my thoughts.

    katheryn

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Radiation seeds

    The seeds seem to cause fewer side effects from the people I know who have had them. Sounds like a plan will be put in place quickly and your mom’s team is on top of it. Let your mom know we are all thinking of her!

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008

    Thanks for the update.  It sounds like your mom is in very good hands and that things are getting into place very quickly, which is good.  I wish her all the very best and hope you'll keep us posted.

  • swood9008
    swood9008 Member Posts: 116 Member
    Thanks everyone, they are

    Thanks everyone, they are saying a small nodule in Anal cavity since everything was removed, and thickening of vaginal wall. dr is hoping some is swelling and scar tissue but over 90% sure it’s something. Will know more after biopsy 

  • Bjvice69
    Bjvice69 Member Posts: 1
    eihtak said:

    swood9008....

    Hi,

    I'm so sorry your mom is dealing with all this and I know how emotionally exhausting this can be on top of all else! If I'm understanding correctly her original diagnosis was in 2015, then a local (same area) recurrance in 2017, and now (2019) a tumor on the vaginal wall. Treatment varies depending on location as well as the make-up of the cancer cell.

    I was initially dx with anal cancer stage 3b in 2011. In 2012 dx with breast cancer. In 2015 anal cancer metastasis to my lung (so still the anal cancer cell but it had moved to my lung) and last fall in 2018 another anal cancer metastasis to a different area near the lung called the hilum. Each of my treatments were different yet some included parts of the same. While my dodctors were quite convinced that my most recent recurrance was anal cancer (in the hilum) I did request a biopsy to be sure. The treatment was radiation so may not have mattered but I wanted to know if it was anal, breast, or a 3rd primary cancer. 

    I was scanned as follow-up last week and for now at least...no new areas of concern! Yay!! I feel great and surely pray that your mom will tackle this and be saying the same soon! I too have an ostomy as a result of my first treatment so we have that in common as well.

    Its a vicious cycle, cancer and its treatment. When our immune system is run down we become even more susceptible to all sorts of things. My initial tumor in 2011 was not tested for HPV but the 2 lung area recurrances were and they were positive for such. This is a tricky virus and still being studied in depth.

    In your moms case, I am curious if the doctor believes it to be anal cancer or a secondary cancer and what treatment is recommended. I think that many things are a factor in how fast and how well we recover and some of what works is unique to each person. You have every right to be positive and assume that your mom has health in her future so don't let your mind get the best of you with anger and worry. I am currently planning a fun family beach vacation later this summer, and I've had days when I couldn't plan on eating the next meal, and everything in between...I will plan also to keep you both in my prayers for healing.

    Please keep us posted as you learn more and know that we will be here to get through this with you. 

    katheryn

    Anal Cancer SUCKS
    AHello Everyone, I was first told that I had a cancer tumor in 2014, but was taking care of my mother and could not do anything about it. She passed away on 8/9/2016. I had a lot to take care of, like my breathing and being able to move. I have a lot of other health issues and thought of this as a speed bump. I had my blood work done in January 2017, and it came back positive for cancer markers, I underwent exams, colonoscopy's and biopsy to come back for Stage 4 Anal Cancer. I finished my treatment, aggressive chemo, which gave me cellulitis in both legs and made my heart stop. I underwent my intensive radiation and it was only supposed to burn some skin off. I ended up getting blisters on my ****, and around my testicles. and then I got to October and thought I was in the clear. Then it happened. The cramping, bloating,nausea, and vomiting, all came back with a vengeance. Oh!! but it brought friends, bleeding, diarrhea, constipation, and a smell straight from HellBoy!!! I have had constant bleeding , well every time I pass gas, or start cramping really bad. I have been told to take FIBER.. lol that was a joke,that just exasperated the problem. I have had to have blood transfusions for these issues, and I found out today that I may even be in Kidney failure.. So Yeah Cancer Sucks,and if it comes back, there is no way I would put myself through this again. I love life, and have fought to live through so many tragedies, and I have always succeeded, but I am so damn tired of fighting, and just want to rest now. You don't know until now that I was raped repeatedly in high school for two years, contracted AIDS from the monster who did it to me, I have had my appendix rupture and had paratinitis and went into septic shock. Spent 3 months in the hospital and given a year to live. I had the widow maker, 100 percent blockage LAD, I had another heart attack, 96 percent blockage and stint placement in both. I had a Double Bypass surgery, I had Renal Failure, and I also have Congestive Heart Failure Level 3, Chronic COPD , Neuropathy in both hands and feet, includes legs and arms. I have spasisity all over, arms and legs. I have also been blessed with having a small stroke that I didn't know about. I have to take Lasix for the swelling in my feet, legs, and pretty much every where in between. I have Sleep Apnea, and use a CPAP..
    . am exhausted beyond belief some days..and the pain is unbearable.. and NOW THAT WE HAVE AN OPIOD CRISIS I CAN'T GET THE AMOUNT OF MEDICATIONS THAT i NEED. So what would you do... LOL the Television show..
  • eihtak
    eihtak Member Posts: 1,473 Member
    Bjvice69 said:

    Anal Cancer SUCKS
    AHello Everyone, I was first told that I had a cancer tumor in 2014, but was taking care of my mother and could not do anything about it. She passed away on 8/9/2016. I had a lot to take care of, like my breathing and being able to move. I have a lot of other health issues and thought of this as a speed bump. I had my blood work done in January 2017, and it came back positive for cancer markers, I underwent exams, colonoscopy's and biopsy to come back for Stage 4 Anal Cancer. I finished my treatment, aggressive chemo, which gave me cellulitis in both legs and made my heart stop. I underwent my intensive radiation and it was only supposed to burn some skin off. I ended up getting blisters on my ****, and around my testicles. and then I got to October and thought I was in the clear. Then it happened. The cramping, bloating,nausea, and vomiting, all came back with a vengeance. Oh!! but it brought friends, bleeding, diarrhea, constipation, and a smell straight from HellBoy!!! I have had constant bleeding , well every time I pass gas, or start cramping really bad. I have been told to take FIBER.. lol that was a joke,that just exasperated the problem. I have had to have blood transfusions for these issues, and I found out today that I may even be in Kidney failure.. So Yeah Cancer Sucks,and if it comes back, there is no way I would put myself through this again. I love life, and have fought to live through so many tragedies, and I have always succeeded, but I am so damn tired of fighting, and just want to rest now. You don't know until now that I was raped repeatedly in high school for two years, contracted AIDS from the monster who did it to me, I have had my appendix rupture and had paratinitis and went into septic shock. Spent 3 months in the hospital and given a year to live. I had the widow maker, 100 percent blockage LAD, I had another heart attack, 96 percent blockage and stint placement in both. I had a Double Bypass surgery, I had Renal Failure, and I also have Congestive Heart Failure Level 3, Chronic COPD , Neuropathy in both hands and feet, includes legs and arms. I have spasisity all over, arms and legs. I have also been blessed with having a small stroke that I didn't know about. I have to take Lasix for the swelling in my feet, legs, and pretty much every where in between. I have Sleep Apnea, and use a CPAP..
    . am exhausted beyond belief some days..and the pain is unbearable.. and NOW THAT WE HAVE AN OPIOD CRISIS I CAN'T GET THE AMOUNT OF MEDICATIONS THAT i NEED. So what would you do... LOL the Television show..

    Bjvice69...

    Oh good golly!!!

    You have been to h**l and back more than most! I am so sorry you've had to take those trips and sure won't say I know how you feel, because you make this journey look like a piece of cake for most of us. I am however truly inspired by your resilience. Sometimes our bodies have a level of resilience physically that our minds don't and its best to just let life happen going forward and trust in the possibility of better days ahead. We all have to make decisions that feel in our gut right for ourselves and I will pray that you are able to find some level of peace that you so deserve as you continue on.

    katheryn

  • Ohmy
    Ohmy Member Posts: 103 Member
    swood9008

    I am thinking positive thoughts that your Mom's cancer has been caught early and is treatable.  I had a reoccurrence and a metasis to the lung both treated with surgery.  No sign of cancer now but my oncologist wants a PET scan every three months.  He said we need to catch any metsis early and treat it.  I know a woman who had uterine cancer two years ago.  The same time I was diagnosed with anal cancer.  She was treated with the radioactive beads and she is doing very well.  We want to remain positive for those in early treatment but we also want everyone to know there are so many cancer treatments available these days for those with reoccurrence and metasis.  

  • swood9008
    swood9008 Member Posts: 116 Member
    edited April 2019 #15
    Met with everyone yestwrday,

    Met with everyone yestwrday, the plan is to start chemo next week week. 4days on 3 weeks off for 4 months possibly surgery after that. The tumor is in the vagina with a lymph node in pelvis that is “tough to get to” boggles my mind this day I’m age they can’t just remove that lymph node. feeling optimistic, mom needs to lose about 40 lbs for surgery total pelvic externarion with what surgeon said is A 50/50 curative chance. that pesky lymph node is what’s throwing some stuff ofd we will take it day by day 

  • swood9008
    swood9008 Member Posts: 116 Member
    Thinking of a second opinion

    Thinking of a second opinion at Sloan Kettering

  • annie4145
    annie4145 Member Posts: 218 Member
    swood9008 said:

    Thinking of a second opinion

    Thinking of a second opinion at Sloan Kettering

    I think that a second opinion

    I think that a second opinion is always good.  At most, it could provide a new treatment option, and at least, it could give additional peace of mind. 

  • pializ
    pializ Member Posts: 508 Member
    edited April 2019 #18
    swood9008 said:

    Met with everyone yestwrday,

    Met with everyone yestwrday, the plan is to start chemo next week week. 4days on 3 weeks off for 4 months possibly surgery after that. The tumor is in the vagina with a lymph node in pelvis that is “tough to get to” boggles my mind this day I’m age they can’t just remove that lymph node. feeling optimistic, mom needs to lose about 40 lbs for surgery total pelvic externarion with what surgeon said is A 50/50 curative chance. that pesky lymph node is what’s throwing some stuff ofd we will take it day by day 

    Lymph node

    After I finished my treatment, they were concerned that a lymph node hadn't responded to treatment. It was difficult to get to and near major blood vessels. Turned out it was actually my right ovary! I had read that it can sometimes happen that an ovary can masquerade as a lymph node. Hope this is the case for your Mom

     

  • mp327
    mp327 Member Posts: 4,440 Member
    edited April 2019 #19
    swood9008

    Yes, I think a second opinion would be wise.  I hope you can secure an appointment soon at Sloan Kettering.  Please keep us posted.

  • swood9008
    swood9008 Member Posts: 116 Member
    Great news! Pelvic lymph node

    Great news! Pelvic lymph node biopsy came back negative!

  • mp327
    mp327 Member Posts: 4,440 Member
    swood9008 said:

    Great news! Pelvic lymph node

    Great news! Pelvic lymph node biopsy came back negative!

    swood9008

    That is such wonderful news!