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Living With Cancer Conference - ACS sponsored conference for cancer survivors and care givers

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

We had the 32nd Annual Living With Cancer Conference here in Augusta, Maine, yesterday. I gather it is the oldest in the country... I guess we got something going up here! See if your local chapter of ACS has one near you. Ours is a wonderful thing which I discovered two months after the end of my treatment and been to each year - this being my third conference.

The conference starts with a keynote speaker, has a morning workshop, lunch, a bit of entertainment, a patient panel, an afternoon workshop during all of which there is a book table, art show, art activities (Design your own mandela this year), a spa which offers short massages and waxings and many exhibits. There is a range of workshop choices and I always want to attend multiples of them. Many survivors come with friends and/or caregivers. Admission for us is free - lunch is $10. It is all just beautiful. And we get to take some kind of plant home.

My workshop choices this year were "The Long Term Effects of Radiation Therapy" (which I had requested they do) and "Treasures on Earth: Spiritual Resources for Living with Cancer". I want to share some of the first with you.

The speaker was my radiation oncologist... an awesome doc if I say so myself. He gave us a good run down of radiation as a treatment and I am glad that most of us had our treatments in the last few years because we likely had much less damage than before that. That said, he told us that vascular damage is inevitable. The good news is that 95% of us will heal from this quite adequately. However, 5% of us will not fare so well. After recovering from the burns, people will have side effects in anywhere from 2 months to 3 years. These include all the skin and colorectal problems we discuss on this board all the time and others - like neuropathy or organ damage. The potential for organ damage for us is less than in other forms of cancer than ours but this is why they try not to irradiate more than the tumor site than they have to. Most of us will know how well we rebound after about 2 years. Treatment for these injuries often is only able to address the symptoms.

They are looking for genetic keys to better tailor treatment to the patient. For instance, they want to be able to identify people whose genetic makeup resists treatment by radiation to spare them. They also want to identify those who cannot repair radiation injury. He spent a bit of time describing what genetics they expect will help and I cannot do that all here. But genetics in this manner was new to me... I only thought of genetics meaning some of us may be more prone to the disease itself. This is looking at genetics involved in responses to treatment modalities.

Anyway, I think there is good news and bad news in this - as with so much of everything. Meantime, I wanna give a shout out to Joanne- I hope you are finding the strength to "just peddle the bike" as Winnipeg's story went. Last year's keynote speaker was a survivor whose first cancer was found in 1985 at which time his prognosis was really poor but he beat it then and has been beating each one that has come along. He said he and his family have really learned to enjoy planning for just the immediate future and that, after umptedy ump bouts, he was NED last year! I hope your story will be positive in a much shorter time frame!

Am feeling pretty good tonight- waves of good spirit to you all!

Priscilla

z's picture
z
Posts: 1307
Joined: May 2009

Hi Priscilla,

Thank you for sharing that with us. I found the information very interesting, and it sounds like a very nice time. I wish you well. Lori

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

for the inspiring words. Sounds like you had a great time. I will certainly look into whether or not there is something similar here. I believe knowledge is power; especially where this disease is concerned. I am doing well. Gearing up for the VATS procedure Tuesday. Certainly would be lying if I said I was looking forward to it :), but it is what it is and I have confidence in my medical team. I am eager to be a success story!
Best to all, Joanne

PS: No "Bike riding" lately, but we did take our scooters to Amelia Island this past weekend and zipped all over the place. It was a great deal of fun!!! Does that count?

mp327's picture
mp327
Posts: 3311
Joined: Jan 2010

I just wanted to wish you all the best on Tuesday. Please know that I will be keeping you in my thoughts and prayers.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I hope you will feel the power of our spirits with you on Tuesday... and, yes, scooters on Amelia Island sounds great! I have friends who winter there each year and it sounds awesomely beautiful - I hope no oil reaches there! I also have a sister, an aunt, a grandmother and a granddaughter named Amelia (and others scattered through our family) so just the name gives me warm fuzzies!

Keep us posted as often as you can...

Priscilla

mp327's picture
mp327
Posts: 3311
Joined: Jan 2010

I am so glad you shared this information with us. I really have always believed that with our treatment of rad and chemo, rad is definitely the more evil of the two. It sounds like your doctor gave some very good information to help everyone understand what radiation really does to us. It sounds promising that they are trying to develop ways to determine who fares better with it than others. I continue to have bleeding with BM's quite frequently, which concerns me. But my colorectal doc keeps telling me it's the radiation damage. I sure hope she's right. I have a colonoscopy coming up in early June and she said at my last follow-up that she would do a biopsy of any area that looks like the source of the bleeding. So, I am getting into high-anxiety mode. If she can confirm that it's radiation damage, I will be able to deal with that. It's still hard for me to wrap my head around the rectal bleeding thing--now I'm told it's "normal" after radiation, whereas it's the same thing that signaled I had anal cancer. Thanks again for giving us all the above info.

z's picture
z
Posts: 1307
Joined: May 2009

Hi Martha,

I still have occasional bleeding. I have told my correctol dr and they had done a biopsy that day. There is scar tissue and there was a little nodule that the dr wanted to check. The biopsy came back neg. Although he didn't say that there was bleeding there. I know I had anal verge cancer, so my cancer was at the peri anal opening going inside, I had a hemrodectomy to remove the tissue there, and I think sometimes the area gets iritated.

My general surgeon when 1st diagnosing me, told me to pat the area not to rub it. He said my skin was raw, in which, I probably wasn't very gentle with my skin. I know that your probably gentle with yourself, but I know if I am not I will get blood. Another thought is, my friends uncle was treated for prostate cancer. He had radiation, and he bleeds everyday, so much so that he has to where a pad. The dr said he was over radiated. I think its just the radiation and I hope you will not have any problems with your colonoscopy in June. I am waiting for my pet-ct results which are due any time today. I have scan anxiety as I type this. Lori

mp327's picture
mp327
Posts: 3311
Joined: Jan 2010

I hope by the time you read this, you have gotten your PET/CT results and everything is fine. Thank you for sharing all this information with me. It's so hard to see that bleeding, knowing that that is the symptoms that started me down this path to begin with. But I do know that this is a common side effect from the radiation and am hoping that to be true in my case. I'm glad your biopsy came back negative. My fear with having a biopsy done is the healing, but if she feels it is necessary, she'll do one. I will not look forward to the healing process, given the fact that it's radiated skin. I will keep you in my thoughts and prayers for good results on the scans. Please let us know what you find out.

Martha

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Yep - here, too. I have a pelvic CAT - I think next week - but no notice of it yet and a sigmoidoscopy the week after and a uterine ultrasound in early June (only way to check female parts as radiation fused my vagina- though CAT may do this as well) - and will ask about a check on the lungs and will only really relax again after all results are in.

Meantime, of course, there are the times of bleeding, remembering the Citracal generics, and then the really important things - my daughter's birthday, visits with the grandchildren, talks with my mom (about to be 90) and I know I will get through it all.

Every time I am assured that the bleeding is not likely to be significant, or that it is the rather large hemorrhoid I now have, I remember the year I was assured there was nothing but a hemorrhoid bothering me - then the cancer diagnosis. It does seem rather ironic. I have to say though, doctors are more willing to make a real check on it!!

Good luck to everyone as you go through the post treatment tests! I wish everyone well!

Priscilla

SueRelays
Posts: 489
Joined: Dec 2009

THANK YOU SO MUCH FOR SHARING THIS!!!!!!!!!!

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Sue- Thank you for all the sharing you do - and for the pic of you with that great shirt!
I do send prayers your way.... I believe in them, too.

Priscilla

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