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My fight progess

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Was diagnosed about a week ago after exploratory surgery where they thought it may be a thrombosed hemmoroid (spelling). I did see the Dr. yesterday and we talked a bit, but he was not able to give me too many answers because I need to ask the oncologist those questions. But he did answer any questions he could. I did find out the reason that I have been in such pain is that the cancer is laying right on top of my muscle down there so that is where the pain is coming in. After my Dr. appt with the VA I had a call waiting at home from the oncologist so I called back and have an appt. Mon afternoon to see him. Want to get this thing started and over with as soon as possible. I did find out that the VA works hand in hand with University Medical Center here in Tucson and thats where I will have my radiation.
Will post again after talking with the oncologist. But reading so many of these post, I thank all of you because I was a little more prepared going in to see the doctor. I also am picking up lots of tips, that I think I will need, as to lotions, creams, and even popsicles when and if I get the mouth sore.
I am also trying to keep a positive attitude and sense of humor about this. I told my friend that since my butt will be radioactive, I therefore will be considered a "hot piece of a**" LOL Gotta find humor where you can.
Hugs and prayers to all.
Pattie

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

I would want my doctor to be honest with me too but sometimes doctors can be a bit masochistic (to say the least). Sorry to say, but that's the truth. I don't think your doctor should have said 'IF you survive the first 5 weeks of radiation'...my goodness, dunk him in the lake.

I know there are folks on this board who have had T4 (which, by reading the NCCN guidelines - no node involvement - is stage 3) anal cancer and who have gotten through not only the treatment but have and are surviving - and are well. Please don't let his words get you down. Are you sure you want to stay with him?

My radiation oncologist was like that. The first exam I had after finishing treatment with him was awful. I haven't seen him since.

You WILL get through this.

Love,
Rose

Cheyenne's picture
Cheyenne
Posts: 72
Joined: Apr 2012

I have to agree. It's your body and you don't have to stay with a doctor if you are not comfortable and confident in his treatment. I fired my first oncologist after one visit because I didn't feel his direction was correct or in my best interest. I did an online search and found the best in my area for surgery and trusted her to direct me to the medical oncologist and radiation oncologist. I trust my team explicitly and do not regret for one moment leaving the first oncologist.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

After re-reading - I can't BELIEVE he said that to you. I'm pissed, for you. There is NO need or reason for him saying something like that. Please consider seeing someone else Pattie.

Dog Girl
Posts: 100
Joined: Sep 2010

Pattie,

I'm not trying to defend your doctor in the least, but I feel sure when he said if you survive the first 5 wks of rad he will zap you for two more that he wasn't referring to your chance of survival, but rather your reaction to the radiation and whether you could stand anymore of it. Some people have to take a break during their treatment. I was Stage 3 with a 4 cm tumor on my sph. muscle as well, so that was T3. I had 28 sessions of rad, and while my hair did thin a bit (I'm lucky like you; I have fairly thick hair), my worst side effects were the burns. I remember one day when I really, really didn't want to go to rad. tx one day and the only thing that made me go was that I had the end date in my focus and I wasn't going to extend it beyond that date. I had to go one some
fairly strong pain meds around the clock for about 9 days, and I had friends and family stay with me then. I slept most of the time, but they would get me up to take me to the appointments or to drink something. Usually after about 4 hours the meds would be wearing off and that would wake me too. I'm not trying to scare you, but everyone here will tell you that this is rough, but you CAN get through it. Try to line up some people to be on call to help you if you need it. Don't be afraid to ask for help. The only good thing about this cancer is the treatment phase is relatively short. I've shared on other posts that I referred to this as my cancer boot camp. Since you were in the military I assume you went through some type of basic training/boot camp when you entered the military and it probably wasn't easy either, but you obviously got through it and you will this too.

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Dog Girl and MP327 it was exactly as you said, he wasn't referring to me dying, just referring to me making it through the treatments. Thank you so much Rose and Cheyanne for coming to my defense though. I do so appreciate it. I guess my doctor is not to great with the English language sometimes. I believe he is Vietnamese or from the Phillipines. He is a good doctor but sometimes I have to ask him to repeat himself so I understand.
I did talk with him today after my radiation and got my full T4N0M0. And the T4 is because it is a really big tumor. I asked him how big and he said the size of his fist..... guess that is pretty big. On a good note though my bleeding has gone down considerably and he said this is a good sign that it is shrinking and the treatment is working. He did say he had an 89 year old woman that had a tumor bigger than mine and in her lymph nodes. He wasn't sure she would make it through the treatment, but she did and is still surviving cancer free 2 years later. He is using the same treatment for me. I do like him and he does have a sense of humor which I like. But yes he can be upfront and honest and I need that too.
Yup Dog Girl... went through boot camp and your right... will get through this too. Thanks
Hugs and Prayers
Pattie

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

I'm so glad that your doctor is encouraged that your tumor is shrinking. That is wonderful news and should be good motivation to keep moving forward, even on the rough days. I'm happy to hear you say that your doctor is a good doc. You are going to beat this!

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

Sounds like you are holding your own so far against the side effects. Keep doing what you're doing and hopefully you'll keep them at bay. As for your doctor's comment to you, I think DogGirl may be right. He most likely was not saying the treatment would be fatal to you, rather that many people have to take a break or end their treatment sooner than the planned number of treatments, due to the toxicity and necrosis. However, you have a heads up on how to deal with so many of the side effects and I think you can get through this better than someone who doesn't have a clue (that was my case). One very important thing to remember to reduce the burning issues on your skin is to have any creams, lotions, gels, etc. completely removed prior to getting treatment. Once treatment is over, you can re-apply. Some of those things, such as the Silver Sulfadiazine, contain metal and can intensify the burning, so you don't want them on your skin when you are being treated. A cream such as A&D contains zinc, so again, metal is an issue. While on the subject of metal, if food is tasting strange to you, try eating with plastic utensils. Some people find this helps to reduce that awful taste that food seems to have during chemo. Keep drinking LOTS of water! You will get through this, I know you will.

torrance
Posts: 118
Joined: Jan 2012

Patti,

The second day of treatment, I fainted and ended up in the ER. The dizziness does come and go as do the rest of the side effects. AGAIN, make sure you stay hydrated. I know the chemo alters your taste buds and nothing tastes the same, but it will return to normal and you will soon desire chocolate! Yeah.

Remember to stay in the moment on focus on where you are at right now.

I remember my chemo nurses telling me the reason they had me drink super duper iced water during chemo, actually, before they started it was to cause the vessels in my mouth to constrict, thus limiting the exposure to the drug that would cause mouth sores. It worked for me. Drank super cold water, then chew on ice chips while the drug was administered.

It truly is amazing, and you will soon be able to relate to this, that now looking back it seems like it was such a short period of time in the scheme of things, however, when you are in the middle of it, it seems to drag on. What an incredible journey we have all been through that has brought us here together for one another. Bless you all.

Joanne

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Joanne. Nice to know I have something to look forward to later. Interesting about the cold water and ice chips.... that's some good info. Being here in the desert I like my water super cold anyway and always have some chilling in the fridge.
Hugs and Prayers
Pattie

AZANNIE
Posts: 382
Joined: Mar 2011

Yes, Pattie, you will like chocolate again. I felt the same way and thought I would never eat it again, but chocolate prevailed - lol!
My tumor was large, too. When I asked the oncologist about the size, he said the size of a lemon. Then when I told the colorectal dr. he said lemons are different sizes...oh well, the radiation zapped it. I asked the radiation tech how can one tell the radiation is working and she said the bleeding stops. Every Monday, they would "x-ray" to make sure they were still on "target", but yet they couldn't tell if the thing was shrinking.
I was stage 2 with no lymph involvement. I think the oncologist was very pleased with the results. I'm 11 months post treatment. Had six month lab work today and waiting for scan appointment.
Best of luck to you!!!

Ann

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Ann, thanks for letting me know that chocolate will not be out of my life forever. :-) Of course I am still drinking those 6 choc. carnation instant breakfasts a day.

Congrats on being 11 months out. I pray your lab results and scan come back clear too for many more years.
Hugs and prayers
Pattie

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