Tattoo Question
My surgery was last Thursday, so if margins are clear, I'll be starting Radiation (6 weeks) in a month. I've met with the Doctor and was shocked to hear about the marker tattoos. With all the reading I had done, I don't know how I missed that. Anyway, she must have seen my expression because she quickly replied, "Don't let this be a deal breaker." Since learning about the tattooing to mark the location of the radiation, I've read many opinions. Some women appreciate them as a reminder of survival, some hate them and try to have them removed later, and many are not opinionated. I respect all of these feelings, but one argument I read for having them and not removing them is that if they are permanent, should the woman ever need to radiate that breast again, the Dr. would know exactly where it had been done in the past. What I don't understand is, I was told by all of my doctors that once a breast it radiated, it can not be radiated again. Should cancer reappear, the next step was mastectomy. If that is the case, why are the marks needed after treatment?
I'm also interested in hearing your opinions of the tattoos and if you did or did not get them. Hugs to you all!
Comments
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I can only speak for myself. To me, it only makes sense to get the tats. They will remain at exactly the same place throughout TXs. You do not have to worry about them coming off and being redrawn on in perhaps slightly different spots. It is only 4 small spots, no bigger than a freckle. I am not a tat lover and would never think of 'decorating' my body with permanent 'artwork' (many do ans it's right for them - just not me) but for a medical reason that would make the TXs easier - no question about it - 4 blue 'freckles' are little to pay. The only people who will ever see them, other than me, are my medical staff amd Hubby so makes no difference to me.
I started with 4 tats but after 4 yrs only 2 are still visiable at all. 1 had faded in less than a yr, 1 in about 2 1/2yrs, 1 has faded a LOT since then bur still slightly there and 1 is still the same as it was on Day One so figure it'll stay. I was told that this often happens. I do not need any
I have been told that once an area has been irradiated, it can never be done again.
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motherofone, I just had my first rads appt on Friday. The tech gave me two very small round tattoos. They are the size of a pen mark. They look like freckles. Mine are not on my breasts. I understand the reason they put them as tattoos is so they don't wash off while you are doing rads. Otherwise, they would have to mark them with a marker, for the treatments, each time. I'm not sure if there is an alternative; I didn't ask. Just wasn't that important to me. The tattoo itself feels like a small shot for a few seconds. I guess you can ask your RO for clarification! Good luck with your rads. I am waiting to hear when mine will start...should be next week, I think.
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Motherofone, you can request that the marks be made with a Sharpie marker and then covered with tegaderm. If they start to fade during treatment they can be redone easily. They would be in the same place since they are careful to redo them before they fade too much.
Many people don't realize that they have a choice. If you seriously object to tattoos discuss this option with your rad onc. She really should have offered you the option when she saw you were upset at the idea of tattoos, but maybe she didn't realize how bad it really make you feel.
I've heard the argument that the tattoos can show where you were radiated in the past but, quite frankly, I don't buy it. If that were the case, why don't docs tell women not to have them removed under any circumstances? Also, if you lose or gain weight they would be useless.
If you really don't want tattoos, I suggest you talk to your rad onc about it again and ask for alternatives.
Best of luck with your treatments.
Leah
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I got the tattoos - six little tiny dots - it was over a year ago and I can't find them now. I always had a hard time seeing them and now they have faded & it's just not an issue. But, that's me, if it is an issue for you, then by all means ask if there is an alternative, but as far as it being a 'deal breaker' - your RO is right - there may be reasons to not do RADS, but the tats are pretty minor in the big scheme of things.
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I would ask if there is a choice in placement. I wish I had - I got 6 tats as well and 2 are very noticeable in clothing/bathing suite. The 1 that bothers me the most is ( annoyingly off centre by a couple mm!) is right between my breasts and a dark blue. At first glance it looks like a big blackhead! (.).(.)
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I received 5 small tattoos for rads. I am in the process of completing breast reconstruction now, and will have the tattoos removed by laser in another 2 months. They are small, but they bother me. I don't like seeing them with the constant reminder of my rads treatment.
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Donna, I'll have to look into that, at least for the 2 that bother me. I see my RO in June, so I'll have to ask, but to be honest I'm kind of embarrassed to complain about something so trivial in the scheme of things.
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I did not want them at first but now I do not even notice them. Only had three. Seems so minor now.
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I have three, and though I'm still in rads now, I have to search for them, as they just look like freckles. I can't imagine I'll bother getting them removed, but maybe I'll change my mind. I also have sharpie lines all over my chest and up to my collar bone that are much more irritating to me, as I look like I have a map of New Hampshire in my chest and the blue marker rubs off onto my clothing
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Thank you all for your stories. I really didn't say I was against them to the radiologist. I think she just saw the shock on my face when she told me about them, and made the comment. I too feel it is trivial in comparison with EVERYTHING else, however I also feel this may be one thing I have some control over. I'm guessing, since I'm very fair skinned, I'll not only notice them, but they will really bother me. If I can avoid them, I plan to avoid them. It is not a "deal breaker" in other words I would still do radiation if I had to have them, but if they can be avoided, I think it would be a little consolation for me. Again, I completely respect everyone's choice in this matter but right now, I'm thinking I'd rather not shower for the 6 weeks rather than have another permanent reminder on my body of this.
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yes, the tattoos are trivial in the scheme of things. However, now that I am near the end of my treatment (and I have had the whole 9 yards!), I have a different attitude. I am doing everything possible to make my body look as great as it can! Focusing on this - diet, exercise & cosmetic changes, gives me control. During cancer treatment I did not have much control. So, the 5 tattoos have got to go!
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You might want to ask how big they make them at your clinic. A friend of mine, who goes to a different clinic than me, has tattoos that are very noticeable. Mine are so small that I would have to look really hard to find them. Nobody else would ever notice.
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I would explore the Sharpie marker option. You can always ask and discuss this with your radiation oncologist. It was a given with my treatment. They never suggested permanent ones. I actually brought it up and was told it was not necessary for me. Mine were marker x's and were .... covered with circular water-resistant/ waterproof coverings. I was able to shower (not scrub) and I ran throughout my rads ... so I was definitely sweating (August and September). Only had 3 spots - two on left side and one on the right following a unilateral skin-sparing mastectomy and chemotherapy. My radiation was not whole breast and a portion of it was aimed at the supraclavicular nodes.
It's interesting when radiation questions are asked and answered, we are all coming it at this from our own experience. Radiation on a breast following a lumpectomy; radiation on a breast following a mastectomy; radiation with node involvement; etc. So there cannot be a one-size fits all answer ... even, I would presume regarding what type of 'marking' you end up with.
Hope your recovery from your surgery continues to go well and that you do not have too much difficulty with rads.
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I was very against the tats, and said I'd prefer markers. They said they could try, but that they might move a bit, not be exact if drawn, etc. They were willing to do that if I insisted, but I basically asked the woman who was going to do it if she could make them REALLY tiny, or I'd have to go with the stickers. She said she could, and she did. They are tiny, a bit bigger than a pin-prick mark. She said the techs might not love them being that small, but that they could be seen if looked for, so she was just going to make ME happy, and did. I am also fair-skinned, and I can hardly see them. Also; if the one between the breasts bothers you after, you can have it EASILY removed, not a big, costly deal (probably covered by your insurance co., as I think the law is you need to be returned to your pre-treatment/injury state after having an illness or injury, if possible). They are so small it would take one laser pulse or one tiny nick with a scalpel to remove it, I've read. Leaving the other 4-5 tats that you truly will not notice will be enough for them to see where the field of treatment was even withiout that top one, I was told.
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re: your question about how the tattoos can be useful since you cannot have radiation to the same area more than once --
The tattoos would help avoid radiation to the same area. For example, suppose you have whole breast irradiation now and later have a recurrence leading to a mastectomy and radiation to nodal areas. That is not the same area that was treated the first time but they need to know if there is overlap of the areas.
Having said that I think most rad oncs would be OK with your having the tattoos removed after treatment if they bother you and your prognosis is good.
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Why are you assuming that only ones who have not had mastectomies have radiation?
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Kicks: I did not read that into these posts. And I am having rads to my mx site. But it definitely is more common to have rads to a breast as often a mx eliminates the need for radiation. Is there something else bothering you?
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"and later have a recurrance leading to a mastectomy"
It was only that one post that assumed that only non-mastectomy women have radiation done. Or that the tats delineate the exact lines of the area of irradiation. My total irradiated area covered a much larger area than just between the tats but they were the markers to line up the machine. Mastectomy is often the only option, with or without chemo and/or with or without radiation, not something done later.
Breast cancer, in all it's types, is very different in so many ways. What 'bothers' me is those who want to believe (say) that what they experienced is what is true for all. There is no "One Size Fits All"
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Hi to all here.. I've just been reading through this thread of conversation. I work in this field, and want to contribute some info. As for tattoos, it's sort of a standard in the industry to give these, mostly to ensure setup accuracy. They are tiny, like if I took a ballpoint pen and tapped a dot on you. The tattoo would be no bigger than that. Benefits of tattoo vs sharpie, well, the sharpie marks will fade and widen, have to be touched up daily, will get on your clothes, etc. Also, the BIG fear radiation therapy personnel have with that is the occasional patient who decides to touch up their own marks at home over the weekend, and slightly moves them-- This has happened, and it's a mis-administration risk that's lead to the policy of giving tattoos.
The tattoos will stay as tiny yet visible setup dots that can be reliably counted on throughout the weeks of radiation treatment. If someone insists on not having tattoos, their request will eventually be honored, but it's going to be met with reluctance. Not because we're just wanting something easier for us, but because it's risky to not give them. Seriously, I've had to re-simulated (Re-CT also) a patient who moved his marks, even after we carefully explained. He showered and they faded, so he guessed about where they were and re-drew them. He was not lining up correctly and we didn't understand why, until he told us he drew them back himself. oh.. not good.
As for literally delineating a field of radiation, they usually don't, not exactly. They are usually setup tattoos that the laser lights in the treatment room will point to, and you'll get rolled and rocked until all the lasers are pointing at all the dots at the same time. Then there is an exact table height and digital readout of the table's left/right position as well. Finally, the gantry is rotated to a position to glance the beam of radiation tangentially across the chest so it spares the lung and heart.
As for the tattoos helping to reconstruct the way a patient was treated in the past to make sure the is no overlap: It's not really THAT important for that purpose- There are beam's eye view radiographs to more accurately give that information, not to mention the treatment planning CT and dose distribution. Really, a patient's old tattoos are only a slight help for re-treatment to a nearby area. The main reason they are given is precision, reliability, and safety during your current treatment. And just like the face photo (patient's don't usually like that either) that's used for a visual ID, it's a standard in the industry and considered "best practice" for quality assurance and safe administration of radiation treatment.
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kicks---
I did not make any such assumption about who has radiation. If you read my post, the part you object to clearly says, "For example..." It is just one example.
Even if the tattoos do not mark the edge of the field, they mark key lines that help recreate the fields on your body. But the likelihood of needing them is low and, as has been pointed out, they may not help later if you gain or lose a lot of weight.
The most important point of my post was that having radiation for breast cancer once does not mean you can never again have radiation for breast cancer -- a common misinterpretation of the idea that you cannot have it more than once to the same area. It depends on the actual area treated each time.
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Kicks,
Please do not be offended. That was certainly not intended. My questions were based on my limited knowledge. I'm BRAND new to this awful roller coaster. I've come to this website to learn about my diagnosis and to hopefully have my questions answered as well as to be supportive of others. Please do not jump on me. Frankly, I don't need it right now. I got my pathology report back yesterday and need to go for a second surgery. Feeling a bit fragile! With my diagnosis I was told if I have a mastectomy, I could avoid radiation. I certainly understand everyone's journey is very different, but my question referred to only what I knew about my diagnosis and potential treatment plan. In my case I was told my whole breast radiation would mean that breast could never be radiated again because it would have received the maximum, hence my question about why the tattoos would be needed later.
Thank you Redsox for making me think about nodes. That makes total sense, of course! As I mentioned - I'm learning. The gaining and losing weight idea also is very reasonable. I appreciate your post.
TXplanner - Wow! Thank you so much for your valuable insight! You are so knowledgable! That explains so much and definitely will factor in my decision. Thank you:)
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I had mine removed by my dermatologist for free. I didn't like seeing them every day, mainly the black one right smack dab in the middle of my chest that definitely did not look like a freckle, as freckles are not black. Many places will remove them for free in October of every year. See txplanner's post above.
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TxPlanner - Thanks for all the great info.
Motherofone - Kicks is a lovely lady, sometimes things just get confused on these boards. One of the things that you find out after a while of dealing with BC is that there are a lot of different kinds of breast cancer and sometimes people who have different types can be inadvertently left out of the conversation or not had their experience taken into account or understood as well as others. It's tough to explain, but hopefully we all understand that nobody's trying to diminish someone else's experience or ignore the fact that treatments aren't the same for everyone.
I did look and found the one tattoo between my breasts.
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The only reply I directed to Motherofone was the first one and I can not see how I wrote anything in that one that was anything but giving my thoughts and experiences with tats and rads positively.
The others were to someone else's post that, as I was able to read, came across quite 'different'. Thus my replies. I can only read the written words, with no other input - just as is true for others with my written words.
None of us really know each other (well there are a few who do actually know each other personally) as this is the 'Internet'. The written words are open for reader to try to understand what was meant - no vocal intonations, body language or the personality/life experiences of the writer. Just the words however written which can come across in different ways than intended.
It really is TRUE - no matter the DX or TX plan, there is no "One Size Fits All" and that does need to be remembered ALWAYS! Of course, when replying to questions, our experiences are what we can give to help out - BUT remember to not say "This is what will happen to you". It may but it also may not. Being prepared with knowledge of potential issues is great but no one can state with assurance that what they dealt with will happen to anyone else.
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I had radiation planning session yesterday and was surprised to get 4 tattoos. I was not told this was going to happen. Someone asked me a few weeks ago -- think it was my surgeon if they would use tattoos for rads. This surprised me and I responded that no one mentioned it as no one said anything about this. It would be best for all to have a clear explanation provided for why tattoo marks are used. It seems like a best practice based on experience. It's a very minor aspect of the whole situation but the fewer surprises the better.
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Totally agree MZ. One of the many reasons I've been cruising through this board is to hopefully avoid surprises. Honestly, with emotions kind of raw at this moment, if I was suddenly tattooed at my appointment, I'm fairly certain it would have put me in tears. I'm glad we interviewed the radiologist prior to my surgery. It has given me a chance to make a decision. I've decided, no tattoos for me. I'm a pale skinned girl who avoids the sun like the plague. A black or blue permanent mark would likely be quite noticeable and the two big scars I now have are reminder enough for me that I've had breast cancer. In the grand scheme of things, this is nothing. Just a trivial little thing, by far easier than everything else we all have to do, but I guess I feel it is something that I can control. I am a rule follower. If I'm told not to get my sharpie marks wet, I won't. Heck, I won't take a shower for 6 weeks if I can avoid the tattoos. i've decided it means that much to me.
I TOTALLY respect everyone else's decision and if this really made a difference in the effectiveness of my treatment or my life, I would not hesitate to get the tattoos, but many people have had a successful experience with radiation with just Sharpie marks, and I hope to be one of them.
Good luck to you MZ! Looks like we are going to be doing rads around the same time.
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