Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #1 

Just did a site search on radiation tattoos - nothing.  Am I the only one who is upset about getting blackheads tattooed all over my chest, just after we tried to save the damn thing with conservative surgery?  Not only did they fail to mention permanent tattoos in the one hour initial radiation indoctrination meeting, they minimized it yesterday when I showed up for a CAT scan and said 'you will never notice them' - bullshit - each was a double prick - which hurt more than getting blood drawn, another lie, and they are hideous.  And they say they will be putting more on next time, making a map all over my breast for my own good.  I do not see this as a badge of honor or a purple heart, it is plain ugly and permanent.   is everybody else's so noticable? - Like a pin head - bullshit again.   More like a bullet hole.      


__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
Jennine

Avatar / Picture

Goddess Forever
Registered:
Posts: 243
Reply with quote  #2 
Mary,

I feel for you darlin...yep, they lie, but why? Don't they think we will figure it out? What are we children? ok, kids, this shot won't hurt and when it's all over you get a lollipop. Brother..

My mother in law had radiation (granted it was over 20 years ago) and they used the same exact technique as they do today.  From what the NP told me (2 days ago) they have come a long way in pin pointing the radation so it's not as hard on the rest of your body. hmmm the only improvement I am reading about is the mammosite radiation. Anyway, getting back to mommie in law.. she had/has those tattoos, same as you are describing. I remember them, they looked like navy/blackish looking spots, bigger than a pencil point, more like triple a pencil point mark. They have faded over the years, but are still there. Just like any tattoo. Where was your tumor Mary? Was it the edge of your breast or somewhere in between. I am asking because I know mom's was closer to her armpit. They still radiated her well past that area.
I am sure they will do the same for me...I am having radiation too.
Hopefully some others who have actually had it can shed some light..

Love to you sweetie,

Jen


__________________
A mind that is stretched by a new experience can never go back to its old dimensions. - Oliver Wendell Holmes
SapphireSky

Supporting Member
Registered:
Posts: 84
Reply with quote  #3 
My radiation tatooes from my first BC are really the size of a pinpoint, so I am wondering why they needed to make yours so big!  Really, you can hardly tell where they are.  I have three tiny little dots that look like miniature moles and that is all I got, so I am also not sure why they are going to draw an entire map of dots on your chest!    

I do agree that the tatooing hurt like heck, though, and my radiation oncologist prepared me for that by telling me the truth about the pain and that they were permanent.....for that I was grateful.  I will get Set #2 in a couple of weeks, so I hope they will be as unnoticeable as my first ones.

So sorry this part has been horrible for you!  I think if you were told the truth from the beginning it may have put your mind at ease a bit more.



__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #4 
Indeed.  I am sure it is their policy to attempt to sneak it in when there is no chance for objection - they must have had plenty of that.  The nurse said, "Well, it was in the literature." - You know, that fat packet of brochures and generic bs.   The nurse double-pricked mine, I can see two fat dots side by side.  You can be sure the next will be a single, and I will be calling to see if there is someone more accomplished.  The head nurse was over-seeing and criticizing the one doing the work to the point that I asked her to stop it, and then she explained when nurse 2 left the room that she was fed up with her after working with her for 52 weeks to do it right.  Great.   
 
Thanks for the feed-back, Sapphire - now I know they can do a better job.
 
The tumor was at 12-1 o'clock, with no node involvement for bc, tho I do have lymphoma too - they are keeping the treatments separate. 
 
Thanks for listening, sisters - It does my heart good to see your reponses - Love, Mary
 

__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
SapphireSky

Supporting Member
Registered:
Posts: 84
Reply with quote  #5 
Also, I should mention that it was my radiation oncologist that did the actual mapping and tatooing and she was assisted by two RNs.

You know, I am all for the wonderfulness of teaching hospitals and teaching situations, and there is a certain amount of "practicing" procedures that goes along with that.  The situation you were put into just does not sound the best.  Good for you that you are going to speak up about it the next visit!!  I truly hope this next time the outcome is better! 

__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #6 
I have good news!
The dots fade. They really do!
I have my new ones still visible, but they look like I hit myself with a blue pen.

BUT MARY!
My permanent tattoos were connected with a sharpie pen. Not more permanent tattoos. Ask them for the Sharpie!


__________________


WE WILL PREVAIL





Calico

Avatar / Picture

Goddess Forever
Registered:
Posts: 2,525
Reply with quote  #7 
I only notice one leftover, under my arm (pit).

My sis was only marked with a marker and took a bath before radiation (for coloncancer).....she also had to be marked everytime to make sure and then they don't measure. Tatoo is better but if they are careless, it sure sucks because the cosmetics about it do matter to us too.
Hopefully they fade or might be removed like other tattoes? With laser?
Hugs!!!

__________________
~ There are lies, damned lies and statistics ~
Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #8 

Thanks for commiserating with me.  I tried to bleach the little blot without success.  I may have exaggerated a bit about the map - they pricked three tattoos, and said they were going to add more tattoos on Tuesday.   They better not connect the dots with tattoo ink!   I appreciate the comparisons -   M


__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
wedsnthings

Goddess
Registered:
Posts: 102
Reply with quote  #9 
Mary,

I also have 3 dots. But they have had to use the sharpie to connect them EVERYDAY!!!! I guess they will fade, at least it's almost over.

__________________
NATALIE
Karen1956

Goddess Forever
Registered:
Posts: 1,218
Reply with quote  #10 

I have 5 "dots"...I know they are there and I can see them...but yet, in another way, I don't notice them...I don't wear low neck tops, so no risk of being visible...

DoreenF

Princess Kindheart
Registered:
Posts: 974
Reply with quote  #11 
I have three blue dots - they are fading a bit ... but still visible to me ...  I agree - they did hurt.  They only time they marked me up with a sharpie was for the mapping sessions.  After that no more sharpies ... I initially had only two blue dots - but they added a third during rads to help them line me up.  I know some women refused the rad tats -  talk to your rad onc and see if they can do something to use only the tats you've already got.     I knew in advance that I was going to have rad tats -  they shouldn't surprise you with that ...  it would be awful if you weren't expecting them and they just simply did it with no discussion.

Gentle hugs,
Doreen

__________________
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto.
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #12 
There have been times where I have tried to wipe off what I think is a pen mark on my chest only to remember it is a tattoo!

Mary, did you score the Biafine yet?


__________________


WE WILL PREVAIL





Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #13 
Tattoos- Thanks for all your thoughts and feedback on this.  I called the Rad onc center today, and talked to a head person of some type.  I told her about being surprised with tattoos, and being a practice subject for a nurse who was being criticized in the process.   She assured me that she would be doing the tats tomorrow and they would be tiny.  Big deal, I already have one front and center.  I will look at it and remind myself what a great support team you all are!
 
And not long after that, I got a surprise call from the student nurse who did the tattoos, who was "secretly" calling me to thank me for speaking up to her superior about her negative criticisms while she was working on me.  She said it had been going on for a long time, and she had been treated with more respect since.  She also said that it was a top notch facility and she would not hesitate to be treated there herself.  So I didn't mention to her how disgusted I was with her work!  Hopefully the decision-makers will pay more attention to how they operate.
 
Biafine - Gina, I am going to experiment.  Before you freak, I started research a while ago to see what the studies and anecdotal comments were about aloe and Biafine (trolamine) so I could support my argument to my rad MD.  As a matter of fact, they have both been trumped in a recent study by calendula, a Mediterranean flower.  http://www.ncbi.nlm.nih.gov/pubmed/15084618?dopt=Abstract   Weleda puts it in all their baby products.  Because of the clear benefit over aloe and the Biafine, Mass General has started backing it.  I got a bottle of lotion by BOIRON, made in France, at Whole Foods - for 13.00 - much cheaper than the stuff they were selling at Mass General for 30.00.  It is 10% Calendula officinalis, and I plan on comparing that to the Mass Gen Hungarian cream if I can find the ingredients on line.   Let me be the guinea pig on this - you can always say that you tried to tell me!   
 
I get the port out at 5:30 Am on Wednesday, and will put the calendula on the incision.  We'll see --    XOXO Mary   

__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #14 
Yes, I have heard about that. It was investigational back a few years ago.
I do know about it.
I hope it works for you!!

The port out is the world's GREATEST FEELING!!!!!!!

Love
g


__________________


WE WILL PREVAIL





energybunny

Avatar / Picture

Goddess Forever
Registered:
Posts: 1,361
Reply with quote  #15 
Mary,  Just had to chime in here on your biafine experiment.  I had an organic aloe cream that I bought online and, of course, aquafor (YUCK), and I did ok until the last week of my rads last summer.  Luckily I had very special friend (GINA) who helped me out and I have to tell you, the only that worked was biafine!!!  It absorbed and softened the skin and helped it heal.  Good luck with the new stuff, but make sure you've got the biafine backup.  Really!!!    Hugs,  Lee

__________________
Lee
Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #16 
Gotcha Lee, and thanks for everything everyday, Gina -
 
I had the rest of the tattoos applied by a pro team today - what a difference - no pain, one prick - and teeny-tiny. I go back on Friday for another measurement.  I will ask the Dr. who is standing in for my Russian-Aloe-is-all-you-need MD for a biafine perscript. - Hope he responds without a squeak.   
 
The calendula lotion I bought at WF is made by a French company, Boiron - who also supplied the calendula to the main U of C study on it compared to biafine- so who knows!  That study found that women who did have skin trouble in general were those who were overweight and/or those who had chemo first - Now I can't find the source, but thought that was interesting.  M 

__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #17 
The calendula study was a much higher percentage of active ingredient than the Boiron company sells over the counter. I remember researching it back in the day when they first started the study.

So, um, without saying anything more my dear friend Mary...
I will just say

You know what Lee said?

All I can say is-

what she said!!!

love
g


__________________


WE WILL PREVAIL





SapphireSky

Supporting Member
Registered:
Posts: 84
Reply with quote  #18 
I am paying attention to all of this discussion because radiation will start for me soon.  Last time I just used unscented Vaseline Intensive Care on the radiated skin and anything surrounding it, and it helped.  I hope I get just that lucky this time, too.

Mary, by now you've had your port out, so wooooooooooohooooooooo!  That has got to feel good!

__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
Limner

Avatar / Picture

Pathfinder Angel
Registered:
Posts: 716
Reply with quote  #19 
Hi Gina and Friends - I had a third rad-prep appointment today, and this trip included an invitation to talk with the supervisor about the tattoo situation.  She was very positive, attentive, and apologetic.  She said she appreciated the feedback, and most women did not have anything to say about the tattoos!  They were in a bit of a tizzy because one of the machines was down, so I took the opportunity to have her ask the stand-in doctor for a biafine perscript.  She hesitated, and I told her I did not want to argue about it - off she went, and came back with a biafine perscript. with 10 refills - So I am covered that way.
 
I stand warned on the calendula.  I have not been able to find a research  document that spells out the % of calendula in the Boiron "Pommade au Calendula par Digestions" used in the study, but I see it on the internet with a 4% content.  The two different products I bought at WF were 10%.  I would be curious if you could find specifics, Gina -  I guess it could be grown - it is the original marigold.  The stuff used in the study was vaseline-based, and I bought a lotion- base and an almond-oil base.  I see on other blogs that women are using whatever form they can find and have been pleased with the results.  I am willing to try it, and now have the biafine back- up.   
 
I am still tired from the anesthesia ------   Good night sweet friends -M

  

__________________
Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #20 
YEAH! Yo got the BIAFINE!!!!!!!!!!

Hip Hip Hooray!!!!!!!!!


__________________


WE WILL PREVAIL





Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.