Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Peg - sorry to hear that Kendalls job didnt work out. But good she is not sticking it out and being miserable and it also seems like an unsafe situation. I am sure she will find the right path.

Also so happy to hear you got to the MK. I know you will enjoy the F &W. My top favorite was the Pork Belly in Brazil, the filet in Canada and some Pistachio dessert at the Dessert place. Also the cold lobster at Hops and Barley. Not the grilled one. I am not an adventurous eater.

Well I had ds3 take me for the blood test today. I got my regular girl and I said, well I am back. She said, yeah and I see you arent walking any better either. Wow, I thought that was rude. I think she meant it as a joke. I am still trying to get to know her personality etc.

Well I think Friday I will have ds take me for the xrays and then I have a meeting wed. and some day I will also call the dreaded cardiology dept.

GAGWTA. Thinking of you all

 

[jillyb]

kofslinky - sorry to hear that you're not feeling so good with the vac. Sending pixie dust your way that things will go more smoothly.

I had my second chemo treatment yesterday. It took a bit longer than the first time because there were issues with my port. I ended up having to keep my head turned to the right every time they tried to get a draw since the catheter is in my neck. I'm hoping there won't be any problems when I go back in 2 weeks. All in all I'm doing much better than I did after my first treatment. Main issue now is the fatigue has hit. I'm starting to lose my hair as well. Noticed some hairs in the sink when I was combing my hair this morning. Good thing I got it cut after my first treatment! GAGWTA!

 

[Pea-n-Me]

jilly It sounds like you have a central line more so than a port? I remember well being right where you are now. I had to put my dog to sleep just as my hair started coming out. It was such a hard time. What will you be wearing on your head, if anything?

koflinsky Necrotic tissue in the wound is such a serious thing to deal with. I'm sorry the wound vac is so uncomfortable, but happy things seem to be going well with the wound itself. It sounds like you are in good hands. (I have seen a lot of serious problems with ports. )

Peg, glad radiation is going well.

My friend seems to be doing well. Thank you for your prayers.

GAGWTA

 

[smiley_face2]

Had a big reply all typed up, with some pictures attached of our trip, then lost the whole thing! that was a good week ago.
Anyway it was a good trip, the scenery was beautiful, and the train ride was awesome! our grand son was made a deputy he was so excited when the train robbers came aboard! lol
Kofslinky, and Jillyb and Talkinghands... sorry you are here, but glad you found this place! It has helped so much to have a place to come and share the ups and downs.
With the type of cancer I have, triple negative, they say there is a greater chance of it returning, but if you get past 3 years then there is less chance than any other kind that it will return at all. I first discovered my lump on Nov 3, 2010 but I don't know when to start my countdown! lol.... I am just coming up on 2 full years since my last radiation treatment, it's been over 2 years since my last surgery and the end of my chemo, too many dates to pick from! Does anyone know when they officially start that count? In my mind, I am still alive 3 years after finding that lump, so to me that is what counts
I see my oncologist for my semi annual check up on the 22nd so I will ask him then. Supposed to be having my annual MRI but they still have not called with the appointment date.
I finally have almost conquered my sleeping problems, it's such a relief to be able to go to bed and actually go to sleep! and I have a lot more energy too, I was afraid I would feel so tired for the rest of my life, but I've been getting a lot more done, and actually waking up on my own by about 7 every morning, 5 am yesterday!
We are supposed to be going to Disneyland again with youngest dear daughter and her fiancé in November. We are heading down on the 16th and plan to be home on the 30th or Dec 1. Spending thanksgiving in San Francisco and the restaurant I wanted is already fully booked We will be driving the Big Sur highway again, going to Hearst Castle and staying in Cambria on Moonstone Beach. Pretty excited!! have all our hotels booked, will be calling to book some dinners at Blue Bayou, and Carthay Circle. Will be spending a day down at Huntington BEach and one day at Knotts Berry FArm too Even though our other daughter was just there with us last summer for 3 weeks!!... she is still jealous! lol....
Anyway here are a couple of pics from our trip, providing photo bucket behaves....
looking down on the town of Osoyoos and the vineyards, the great train robbery, our grandson and his toothy smile...lol... he was so proud to be a deputy! spotted lake, and old western style town called Deadwood, a rainbow over Okanagan lake, and on the road...it sure was like driving through central California!

 

[kofslinky]

smiley_face2- This is just coincidence! I was officially diagnosed with my breast cancer on November 4, 2010, and it is triple negative. What a small, strange world! I hadn't heard of the greater chance of it returning, or the chance it might never come back if its been three years. I've been cancer-free for about a year and a half, so I'm curious about when your three years is up too! Love the pictures- looks like a wonderful trip!

I go back for my next post-op visit next week, so I'm hoping we see some good things happening. The home health nurse mentioned that some of the tissue might still need to come out, but if he wants to go back into surgery I will lose it. Here's hoping things go well!

 

[Pea-n-Me]

I am triple negative also. My understanding is that the recurrence rate is higher in the first two years, but then it drops off to the same recurrence rates as hormone positive breast cancer. It's possible things have changed in the years since my bc, idk. I will look it up when I get a chance, now I'm curious. (I had no recurrence, thankfully!)

 

[Feralpeg]

So far, radiation has been going well. The machine does exactly the same thing each time. I've gotten to know what it will do when and to know when it is over...until yesterday. Yesterday, it did something totally different. It was a different sequence of movements by the machine. In fact, I saw one part of the machine I'd never seen before. I thought it was odd, but decided that maybe it would differ occasionally.

Today, the machine was back to the original pattern. But, this morning I noticed I was extremely tired. Again, I assume it is all just catching up with me. This afternoon, I've spent the majority of the afternoon in the bathroom.

So, now I'm paranoid. For those of you who have had radiation, did the pattern change or always remain the same?

I know I'm probably being silly, but I can't help but wonder.

 

[Pea-n-Me]

For me it was the same until the end, with the boosting dose. Did you ask them why it seemed different? Strange. It does make you very tired, especially coming off of chemo.

 

[Feralpeg]

For me it was the same until the end, with the boosting dose. Did you ask them why it seemed different? Strange. It does make you very tired, especially coming off of chemo.

No. I didn't ask. I will ask about it tomorrow. I knew that eventually the fatigue would catch up with me. The fact that it and the diarrhea both happened the day after just made me a bit paranoid. I went out to dinner last night with a friend. The later could be just something I ate.

The team seems very competent, so I'm probably just being silly. Thanks!

 

[robinb]

Just checking into the thread. My radiation starts tomorrow. They found more DCIS when they went in for the additional margins. The doctor says that my type of DCIS tends to have a mass and then skip to another one. I didn't want radiation but there it is. I'm going to get the whole 6 weeks and they will irradiate the whole breast *sigh*. I talked to the oncologist today and we decided not to go with Tomoxifin because the side effects outweigh the benefits for me. We may try a blahdiddiblah inhibitor (typing on my iphone & can't remember the name of it) but it only works if you are in menopause and I'm not sure if I or not. They will give me a test when radiation is done to check. Anyway ... I got my first ever tattoos this week. It wasn't quite what I imagined, LOL. Maybe I'll turn one into a dolphin .

 

[Pea-n-Me]

Gotta love the tattoos.

OK here it is re: triple negative, from breastcancer.org

In addition, triple negative breast cancer:

Tends to be more aggressive than other types of breast cancer. Studies have shown that triple-negative breast cancer is more likely to spread beyond the breast and more likely to recur (come back) after treatment. These risks appear to be greatest in the first few years after treatment. For example, a study of more than 1,600 women in Canada published in 2007 found that women with triple-negative breast cancer were at higher risk of having the cancer recur outside the breast — but only for the first 3 years. Other studies have reached similar conclusions. As years go by, the risks of the triple-negative breast cancer recurring become similar to those risk levels for other types of breast cancer.

http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

 

[smiley_face2]

kofslinky, that is so weird!! I spent about 6 months on chemotherapy, and I noticed the end of my scar getting bigger, a lump, and I asked the doctor who was supervising my chemo in the local hospital about it a few times but she always said it was just scar tissue. well after I finished the chemo, in a period of about 4 weeks it got a lot bigger, I was seeing the radiation oncologist anyway so waited to ask her because the other dr was so sure it was just scar tissue. she took one look and called the biopsy people into the room right then, and the next day called back that it was cancer. I went through a second surgery by an amazing dr who I bless every day, and he was very thorough. He was quite shocked that the previous surgeon left me with one margin that was less than 1 mm. and that the dr supervising my chemo brushed off my concerns over months. He felt certain that it was not a reoccurance of the the cancer but rather a regrowth from cells that were left behind in the too small margin. It has not come back since, so I think he was right. that and the fact it was growing directly on the scar where the poor margin was. Betweeen the first surgeon and the first oncologist, I told my family doctor I felt I was alive in spite of them, not because of them I have a new oncologist who is much more thorough, and whom I trust much more.
Pea n me... I found this on the Triple negative Breast cancer foundation website.... "After five years, your risk of recurrence goes down. In fact, as time goes on, your risk for recurrence may be lower than that of someone treated for estrogen receptor-positive breast cancer."
I know I read somewhere that it was 3 years not 5, but at any rate, I think getting even 2 years out from this especially bad cancer is good news!! Here's a link to the page with the info: http://www.tnbcfoundation.org/survivorship.htm
In all honesty, I felt that radiation made me a LOT more tired than the chemotherapy did!! and it is only now in the last 6 weeks that I feel almost back to normal as far as energy goes, that's a full year later. I am just glad to be feeling better! I was honestly thinking I would never have energy again! We have made 4 trips to Disneyland in the 2 years since I ended my treatments, and even on the last trip in February, I was so sad at how much less I could do than I used to! Don't get me wrong...I was delirious to be there at all, to be alive to be there!! but I was one of those ones that entered at rope drop, and practically had to be kicked out well after park closing usually at midnight! We will be there again in 5 and a half weeks and I am looking forward to putting all this returned energy to good use!

 

[Pea-n-Me]

Hey, smiley, I'll take it! I always like hearing good news! Loved your pics, btw!

 

[networktek]

Hi every just wanted to let every one know that i am hosting a run with all proceeds going to Breast Cancer Research any one can join or make a donation https://breastcancerrunforacurevirtualrun.eventbrite.com/

 

[Pea-n-Me]

Hi every just wanted to let every one know that i am hosting a run with all proceeds going to Breast Cancer Research any one can join or make a donation https://breastcancerrunforacurevirtualrun.eventbrite.com/

Thank you!

 

[robinb]

I went in for my first radiation treatment today and saw a note attached to my chart that said "Pt nervous at CT scan". WTH? I wasn't nervous. I was pissed. The CT Techs sent their Resident down to get me. He said something like "Hi, I'm Juan. I'm a student here. Please follow me." and he started off down the hall. He made some nice small talk and seemed like a nice guy but he really didn't explain who he was. why he was there or where we were going. When I finally got to the CT room there were 2 Techs there who introduced themselves to me but didn't say a word about Juan. I had to ask who he was! Then, they didn't even ask me if I minded that he was there while my breasts were exposed, although they did ask if I wanted an all woman staff.

I know that I'm going to a teaching hospital. I'm OK with Residents being in the room, asking questions, doing some of the procedures etc with me. They have to learn somehow. BUT is it too much to ask for the doctor or tech to introduce me to the student and then ask if I minded that they were there?

So, I pointed out the note to the tech who checked me in (and who had done the CT scan) and she said "Yes you were nervous." at which point I told her that I wasn't nervous but mad that I wasn't introduced to Juan properly or asked if he could view/participate.

*sigh*

BTW, does anyone have a cream they really like? I think I'm really going to need it.

 

[Feralpeg]

I went in for my first radiation treatment today and saw a note attached to my chart that said "Pt nervous at CT scan". WTH? I wasn't nervous. I was pissed. The CT Techs sent their Resident down to get me. He said something like "Hi, I'm Juan. I'm a student here. Please follow me." and he started off down the hall. He made some nice small talk and seemed like a nice guy but he really didn't explain who he was. why he was there or where we were going. When I finally got to the CT room there were 2 Techs there who introduced themselves to me but didn't say a word about Juan. I had to ask who he was! Then, they didn't even ask me if I minded that he was there while my breasts were exposed, although they did ask if I wanted an all woman staff.

I know that I'm going to a teaching hospital. I'm OK with Residents being in the room, asking questions, doing some of the procedures etc with me. They have to learn somehow. BUT is it too much to ask for the doctor or tech to introduce me to the student and then ask if I minded that they were there?

So, I pointed out the note to the tech who checked me in (and who had done the CT scan) and she said "Yes you were nervous." at which point I told her that I wasn't nervous but mad that I wasn't introduced to Juan properly or asked if he could view/participate.

*sigh*

BTW, does anyone have a cream they really like? I think I'm really going to need it.

That is strange that they didn't introduce him as a student and ask if you minded him being there. There are two students working for my radiologist. They introduced them right away and asked if I was okay with having them there.

I've been using an Aloe cream for sensitive skin that I got at Walgreens. It is Walgreen's brand. So far, it has worked well for me.

Well today, I asked the tech why the machine did a different sequence on Tuesday. It turns out that, once a week, they take films. That causes the machine to act differently. I felt kind of silly, but at least I know now. 8 sessions down...25 to go!

 

[Pea-n-Me]

Robin - was it a student, or a resident? They are different, but all are part of a team. Usually when you sign consent forms, a teaching hospital clarifies that students may be part of your "team". It's unclear whether Juan would be expected to obtain permission to "watch" your CT scan. A student might watch, but doubtful a resident would, so it's unclear exactly what is going on. A note about anxiety might just be so that others can take extra care to make you comfortable for the procedure.

 

[luvmarypoppins]

robinb - sorry you had to deal with all of that. I too go to a teaching hospital and have had my share of students and then some. The worst was during an internal sonogram they just open the door and ask if the student can observe. They asked before they started the procedure. Thank God she was a girl or I would have hit the roof.

I know they say you can refuse the students etc. One guy refused my ds yest, so its all good. Its your body and you have the right to say yes or no etc. Hope the next experiences are better for you.

Peg - I am glad you got the answers that you needed. Good you were observant about that.

smiley - our pictures are beautiful. I love the double rainbow one. It also looks like Jacob is having a great time! Love his smile. Glad your sleeping issues have been resolved.

Well I am . They just called with the latest blood results and it was good, so I guess the first one was a false positive, so no liver problems for me, yippee!

Linda - Just wondering if you have a cardiac stethescope. Ds is thinking he might need this because he says he is having trouble hearing things? Oh you would appreciate this, yest. one of the pts. LVADs was malfunctioning and he was tachying so they called a code and ds had to go in etc. Never a dull moment. I am sure you deal with this all the time. Ds is getting used to it. Last week he said he had to bag his first body. So sad.

Now ds3 is sick so I dont know if I am going for the xrays tomm. We shall see.

GAGWTA - thinking of you all

 

[Pea-n-Me]

Oh, and I used Aquaphor. http://www.walgreens.com/store/c/aquaphor-healing-skin-ointment/ID=prod14801-product