Intro
Hi Guys,
My name is Patti and I'm new to this venue. DX'd with Stage 3A Anal cancer Sept 2018-finished chemo radiation 11/18. First pet scan showed partial response/residual disease. Docs said this is quite common. Any thoughts? The surgeon said he no longer feels the tumor but prepare myself for a colostomy just in case. WTF. I am a nurse case manager. I am only working 1-2 days a week. I feel lazy and broke but when I try to increase hours I have extreme fatigue. I walk every day, eat well blah blah but still so tired. My husband died of HPV + head and neck cancer 2 years ago so this could be grief too.
Your stories have been so helpful. Thank you all for being here!
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When that happened to me, I fought the reconstructive surgery which would end with me having a colostomy. I pushed for more chemo and radiation which almost killed me. Ended up with the colostomy anyhow. If I had to do it over, I would have had the surgery and eliminate all chemo and radiation therapy. The colostomy is really nothing once you get use to it. The side effects from the radiation and chemo are MUCH worse. I too am a nurse!
May 17, 2019 at 5:46PM PDT by Private User4 people like this comment
Thanks Regina,
Thanks so much for responding, I think the APR part of the surgery is what scared me so much. Yeah chemo-radiation are super tough. I don't feel so alone now. Thanks!
Thanks so much for responding, I think the APR part of the surgery is what scared me so much. Yeah chemo-radiation are super tough. I don't feel so alone now. Thanks!
Lucky likes this comment
Hi Patti. My radiologist always said that we have to wait for the full six months to get the final result. I hope your next scan in June will be negative. Hugs!
5 people like this comment
Thanks so much Olga.
I too have a colostomy after a full salvage APR, due to the cancer returning, because it spread to my spine, hips, abdominal wall , I also had a few more radiotherapy, recently I have been diagnose with chronic osteoporosis throughout my bones, due to the radiation, so go with the op!
I irrigate my stoma and only wear a 1 1/2 “ cover, or plug... it’s virtually unnoticeable even in a bikini!
Good luck with your treatment xxx
I irrigate my stoma and only wear a 1 1/2 “ cover, or plug... it’s virtually unnoticeable even in a bikini!
Good luck with your treatment xxx
6 people like this comment
Thanks Debi. Sorry came back but sounds like you're kicking butt. Wondered about a bikini so loved to hear.
Lucky likes this comment
Hi! I'm sorry for your husband's death. I too had HNC (Stage 3 Metastatic Left Tonsil) in 2012 at age 54. All tx is tough but radiation to the mouth and anus/gentalia is a whole other kind of brutal. We have survivors here who actually felt liberated having the colostomy. There's also training whereby, like Deb you wear a plug. AND, no offense to your MD, but just because he made that statement doesn't mean it will be. Blessings.
HNC and anal cancer. Seems like too much for one person to bear. You're amazing. I agree statements are not always facts!
My surgical oncologist always gave me the same warning about the colostomy. She even warned me how some people have such bad effects from the radiation, despite being cancer free, that they ask for the colostomy. I think some doctors just don't want to sugar coat things. Don't worry till they tell you to worry is my motto.
Sorry about the loss of your husband. That sucks to lose your spouse to cancer and then face it yourself a short time later.
Just hang in there cause it will get better...just keep taking good care of yourself.
Sorry about the loss of your husband. That sucks to lose your spouse to cancer and then face it yourself a short time later.
Just hang in there cause it will get better...just keep taking good care of yourself.
3 people like this comment
Thanks Mari. Good reminder not to worry about the future. Right now is OK.
Hi Patti, so sorry for losing love of your life. I believe still too early to determine if cancer still there. The fatigue could be post treatment which is normal. I'm glad u found this blog and members here have been through it all and can be if great help for u as it is for me. Continue posting so we can accompany u on this journey.
Hi Patti,
Welcome! I am sorry about your husband. That is so hard, and now with your anal cancer.
The radiation and chemo stay active in the system for 6 months; so I hope this kills it off.
I hope that you are able to give you body a chance to heal and make time to do things that bring that healing, maybe traveling or something special.
I will be sending good thoughts your way.
Hugs E
Welcome! I am sorry about your husband. That is so hard, and now with your anal cancer.
The radiation and chemo stay active in the system for 6 months; so I hope this kills it off.
I hope that you are able to give you body a chance to heal and make time to do things that bring that healing, maybe traveling or something special.
I will be sending good thoughts your way.
Hugs E
Hi Patti and welcome to BFAC, although I'm sorry you have a reason to be here. I'm happy to hear that your treatment is all finished. I too had some residual tumor at the time of my first follow-up scan, but that was way back in 2008 and I'm still here and doing well! Radiation can continue to eat away at a tumor for up to 6 months, so I hope that by now, yours has met its total demise. As for the fatigue, it took me at least 6 months to get some energy back and 2 years to have the same level of energy that I had before treatment. It's good that you are walking and eating well. Don't get too discouraged, as this treatment takes a toll on one's body. My thoughts about a colostomy--don't go there until you get there. There are many 3A survivors who have avoided that and I hope you will be one of them too.
I see you are in the Atlanta area--me too. There are some other Georgia gals in this group too. Sometime, perhaps, we can all get together.
Take care and celebrate every little improvement, even if it's not falling asleep before the 10 o'clock news! I wish you all the very best!
I see you are in the Atlanta area--me too. There are some other Georgia gals in this group too. Sometime, perhaps, we can all get together.
Take care and celebrate every little improvement, even if it's not falling asleep before the 10 o'clock news! I wish you all the very best!
3 people like this comment
Very heartening. Love that folks are nearby too. Thank you!
I'm so sorry about the loss of your husband from this horrible disease. I was tired for months and months, and discovered I had depressed marrow from the Mitomycin C, so was chronically anemic. I hope and pray that is finally resolved 5+ years out. I feel fine now, but it took a while.
The radiation keeps working, the tumor is dead, it just doesn't know it yet, that is why there is a little residual showing. Of COURSE, the surgeon said that, he is a SURGEON! I am an OR nurse 35+ years, and we like to say, "When you have a hammer in your hand, everything's a nail", so ignore that comment! Yes, WTF?
A nurse friend of mine who lost her husband said grief counseling was so beneficial, even as she had to force herself to sign up, because as you know, nurses are invincible, (or so we think).
Glad you found us, this is a great group, and welcome!
The radiation keeps working, the tumor is dead, it just doesn't know it yet, that is why there is a little residual showing. Of COURSE, the surgeon said that, he is a SURGEON! I am an OR nurse 35+ years, and we like to say, "When you have a hammer in your hand, everything's a nail", so ignore that comment! Yes, WTF?
A nurse friend of mine who lost her husband said grief counseling was so beneficial, even as she had to force herself to sign up, because as you know, nurses are invincible, (or so we think).
Glad you found us, this is a great group, and welcome!
3 people like this comment
You are so right about surgeons. Made me laugh. I worked late at the hospital tonight so I needed that. Love hearing all the success stories. Yeah I need so me soon. Glad you are feeling better finally.
Lucky likes this comment
Welcome to the group. You are among friends here.
Second the comments by Tyndall and Smurf, and welcome Patti, sorry for the reasons you are here but this is simply the best support group you will ever find. I'm almost nine years out from treatment and the "new normal" is not quite like the old normal, but then I am nine years older as well! Hang in there...and keep posting...
3 people like this comment
I second the comments from Tyndall and Smurf too😊
Hey, Patti! First off, I’m so sorry for the loss of your husband. Damn HPV needs to be stopped by the vaccine. As far as your post treatment prognosis, maybe you should seek a second opinion? Many on this site have done so at MD Anderson in Huston. In any case, a second opinion is never a bad idea in my opinion. Sending positive energy your way, and wishes for a rebound from the fatigue. Please keep us posted—we all do care here!
Thanks so much! Good to know about MD Anderson. I will see what the second scan shows. Fingers crossed.
Lucky likes this comment
Hi Patti, you will find this group very informative and loving. Sorry you had to join us, but now you have you will find yourself in a group of experts. I think that the radiation hasn't finished its job yet, the next scan will be able to show that. I don't think you should think about the colostomy at all yet...the surgeon is probably just used to slicing and chopping and is sharpening his scalpel! I know others have another opinion.
Tiredness will be with you for a while yet, sorry to say. We're all different, but I am still tired after 2 1/2 years from treatment. It is getting better now, thankfully.
Really sorry about losing your husband, just terrible.
Keep posting.
Tiredness will be with you for a while yet, sorry to say. We're all different, but I am still tired after 2 1/2 years from treatment. It is getting better now, thankfully.
Really sorry about losing your husband, just terrible.
Keep posting.
Lucky likes this comment
I am so happy to have found you guys. I am trying to take my grief a day at a time. Just miss him very day. Glad your energy is a little better.
Susan likes this comment
Ahhh I am feeling the hugs, prayers and punches!
I had the APR with the flap surgery in December 2018. The colostomy has actually been a relief compared to the pain I had with the reoccurrence. 6 months post surgery and I am pretty much pain free. I am so sorry you lost your husband. I stayed home for 4 months when I had the chemo and radiation in 2017. It wipes you out.
Hi Patti...I can so relate. Had the PET scan, showed 'improvement'. Then se ond PET, 6 months post tx showed All Clear. So, hang in there. I too am a nurse, work per diem 2 days week and when try to work 3rd day, totally exhausted. No more third day for me. Even the 2 days are quite tiring, but can get through it. So, when read your story I thought it was mine LOL.
We all get through it together here, so welcome
We all get through it together here, so welcome
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