Summer 2015 Rads
Comments
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Keys-Plez I haven't read the article on that link yet but my RO discussed both the 4 week treatment and the 6 week treatment with me. I chose the 6 week treatment because she said the studies done for the 4 week treatment so far were on women that did not have DCIS. I have DCIS and decided to stick with the 6 week treatment plan.
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Canadian/short vs. U.S./long radiation sequences: Huh. Avant-garde? Not studied in patients with DCIS? Didn't know that. I live in a fairly small town (not quite 10,000) but the local cancer center serves a wider area, not surprisingly. My RO just suggested the shorter form; it's a good solid hospital, but I wouldn't have described it as avant-garde.
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Hi everybody! I haven't checked in here in awhile but here is an an update. I finished my radiation on July 20! Yay. 32 total. 28 whole breast/axilla and 4 boosts to the breast. My skin is looking nice but I do still get the occasional "zap" in my arm pit and breast. I just had my bilateral salpingo-oophorectomy (laparoscopic) on Aug 5 and wanted to share about that since I know several of you are considering it. The surgery took about an hour. I went home right afterward with 4 tiny little incisions covered in tegaderm. One just at the bikini line, one near the belly button, and one on each side. No drains. I needed pain meds the first two days after surgery but none since then. My bowels were slow to wake up after surgery so I ate jello, etc for the first couple of days as well. Now things seem back to normal. I haven't been cleared to drive or work yet but I am feeling better. The first two days it was hard to stand up straight or to bend over too far because it pulled on my abdomen. Now I can do both but still walk slowly. Overall, this surgery was much easier than my lumpectmoy/axillary node dissection. So yay for that!
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KPT - I'm glad to hear it went relatively easily. Thanks for the update. It's good to know that your skin is looking nice, too. What about the texture of your breast - does it feel normal again? (Sorry if that's too personal.)
I agree, Queenmomcat - it seems to me that the Canadian protocol has been pretty thoroughly vetted and I can't see that it makes a difference whether it's DCIS or IDC. US doctors can be incredibly slow to adopt strategies that have been proven elsewhere, almost as if the research doesn't matter if it wasn't done here.
I am down to 4 more boosts. If all goes as scheduled Friday will be my last day!
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Hopeful: (snorts of rueful laughter) Slow to pick things up? Understatement, if I ever heard it! While I understand that different countries have different criteria for what constitutes "proven treatment", I didn't think that Canada and the UK were that different.
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knittingPT, That was such good information. Please consider copying it to its own topic under the Surgery, Before, During and After forum. I think there are many out there who would appreciate it.
(If anyone else can think of a better forum to add that to, please chime in.
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Keys- I agree that it makes sense to ask your local RO consult with the UF RO. He/she should not be insulted and should be open to learning about a different approach. I think, anyway.
My dx was DCIS. My RO, and the BS I saw at Memorial Sloan Kettering both recommended the shorter course for me, based on my age and the early stage. RO said she doesn't recommend this for younger people as there aren't studies about what happens 20 years out. They both said beyond that, outcome and side effects are similar.
I am currently 6 days post-treatment, waiting for the fatigue to at least begin to lift.
Good luck with everything! You'll get through this.
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SweetHope, I agree about KPT's info. It's worth hanging on to and making it easy to find.
How are you feelign??
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I don't think it's a small town vs large town thing. I'm getting treated in Los Angeles, west-side, and they know of all the latest studies (lots of guys associated with UCLA and Cedars and have Westside and Beverly Hills practices). I still only got offered the long (very long! 28 full-breast and 8 boosts) course. I think doctors tend to be more conservative than not. They want to have lots of studies and over long years. Unfortunately, research and new methods are coming very quickly these days, so they can't always go with the conservative ways.
I think it's great that we have access to all this information and can try and see if different methods of treatment will work for us... or not. And we can choose doctors who will be more in accord with our choices, too. However, there's other things that get in the way, such as insurance, or location or whatever. Sometimes it's a big fight and a hard decision. I don't think any of this is really going to be that easy! There are different treatments and choices and so many different dxs... and there's how much studies you think are good enough to go with, etc.
I'd have liked to have had the shorter protocol explained to me. My RO did not offer it and said he determined the best thing for me based on too many factors to easily explain! It was a bit like he was affronted I'd question him... BUT, I think he's good at what he does and actually believes he's done the right treatment--and I'm not going to be unhappy about it, because it's not as if he's totally proved wrong. It's possible that given all the factors, the long course is right. Maybe he'll be proven wrong down the road, but these treatments are always evolving and the doctors have to work with what they've got at the time.
I rather believe that things are just transitioning a lot now, so maybe shorter courses will be what will be the norm in a few years. Or maybe something else will come along?
Anyway, too late for me. Those on this cusp will have to look into it and try to figure it out, though! Good luck!
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Oh, hey... I am peeling a little now (5 days after ending RT). But it's not bad peeling. The dark skin layer is just gradually going away. I worried that peeling would be like some severe sunburns I've had where it comes off it thick sheets! But it's not like that, thank goodness. I barely notice it. Mostly just happens in the shower and I see less brown coloration and in a small area of my boost the pink is a bit shiny, which means new skin is showing...
I'm even feeling like sleeping on that side and squishing that boob and not feeling uncomfortable! Yay! And the SNB incision is feeling less puffy and irritated, too.
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Quick question for your ladies, when you got your CT scan after your SIM, did they shoot you up with contrast? I really don't want another injection:(
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Littleblue, no contrast for me.
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I don't think I got any contrast... I barely knew I was being CT'd... I guess that's what that big CT tube was, eh? Yeah, they just scanned and marked me up with pens and tattoos and dermatag stickers... That's what I noticed most. And took photos! No IVs or injections... (other than the tattooing)
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No contrast for me either!
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No, LittleBlue - no contrast and it was pretty fast. By the way, I did it without the tattoos (stickers only) and it's worked out just fine. I don't know if that's an issue for you or not, but do want you to know there are options.
My ROs did discuss the shorter protocol and why I wasn't a candidate for it. I'll be interested to see how thinking develops on that issue in the US.
April, I'm glad you're doing so well! Thanks for your very thoughtful post as well as your update.
It's a week now since the last of my whole breast treatments and, while I know that theoretically damage is still taking place, it's at a pretty glacial pace (at the moment!). It doesn't look any better but nights haven't been as uncomfortable (no more ice packs in bed!) and I've woken up on that side a couple of times without any discomfort. There's still a LOT of pulling in the tissues underneath, however, especially along the scars. I'm not seeing much change to the skin from the boosts yet, either, which is pretty much in line with my RO's prediction.
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April25, I have never had a PET scan, my Oncologist said that my blood would tell him the information that he needs to know and will do a PET scan only if I have bad pain somewhere because they are so expensive. Have all you ladies had a PET scan??? I know that this is very minimal but I'm on #10 out of 33 treatments, I'm so happy to hit the double digits!!
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No PET scan her either.
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No PET - and I was node-positive from the get go.
( I did have an MRI, CT-Scans and bone scans at dx. as well as later.) -
Me to- MRI, CT, tumor markers and such in blood work- no PET. My MO doesn't think they are warranted unless you have pain, because they aren't very sensitive.
Yay! No contrast! I want to save my veins as much as possible since I was such a whiner about my port LOL
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Hopeful, To answer both your questions...1. The cake was chocolate with chocolate mousse, hard chocolate drizzle, chocolate whipped cream and weighed more than any other cake I've ever bought. The bakery sells it in slices, so one day when I've been a very good girl, I will treat myself to one-quarter of a slice!
And 2. The prednisone is working wonders on this pneumonitis. I don't know if I shared this before, but my Anistrozole (endocrine therapy) can cause coughing and low grade fever and flu-like symptoms, too. So before I started on this round of steroids, I stayed off the Anistrozole for five days to see if it could possible be the cause. I was worse than ever, but was so happy because I have had no SE's with the HT and really wanted to stay with that Teva brand. So I'm back on it and also on the prednisone for about two more weeks. Sure hope that fixes it.
I've kept up with everyone, everyday...and you all seem to be flying through this with minimal problems. Congratulations to everyone for committing to this and seeing it through.
And Hopeful, you make a great Head Counselor at Camp I.
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SweetHope - I'll be you were voted Patient of the Year after delivering that cake. It sounds amazing!
That's interesting about your HT, too - I wasn't aware of that as an SE but am so glad that it's NOT a SE for you and that HT is working out so well for you. And yes, I sure hope, too, that the prednisone clears it up for good! It's great that you're feeling better.
Thanks for your endorsement, too; you set a great example, you know. But there's no way I'm coming back next summer!
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2/3 done with radiation!
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Hopeful, my skin over my breast feels pretty normal. It may be a little bit tighter than the other side but it's hard to say with so many scars on there. I do have some scar tissue inside the breast but the skin itself seems pretty normal.
I will try to start and oophorectomy thread since I didn't see one when I was looking pre-surgery. Great idea!
No contrast for my CT scans during radiation. I did have a PET scan prior to starting treatment after they discovered cancer in my lymph nodes and oncologist was worried that it might have spread other places too. I had bone scans, PET scan, MRI, etc all beforehand.
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6doggies- I had a PET scan post surgery. 7 lymph nodes involved.
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KPT - thanks for the info, as well as for starting the oophorectomy thread. I think that will be useful.
Susan - 3 cheers!You'll make it! How many boosts are you having? Just asking as I have found it much easier since we switched to the boosts last week. I realize not everyone will have the same experience but I was relieved that it did seem to quit getting worse at that point. (Of course, it could have been psychological, too.) Hang in there!
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Thanks! The last 5 I think are boosts, so a week from tomorrow is the end of whole breast (sic, because there's no breast) radiation.
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hello. I had a sim today for the boost radiation. Two more days of wbr then boost for 5 days. I have 3 areas that are itchy and some redness. All 3 areas will be finished Wednesday as the boost will just be the tumor bed area and chest wall according to the RO today. Almost there.
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I sent my KeyWest RO an email yesterday asking if I am a candidate for the 3 week rads. Hopefully I'll hear from her today. Rads start Monday, 17th.
Go to the JAMA Oncology website. Their Aug 6 edition published 3 good articles on hypo vs conventional radiation. (3 week vs 6 week).
BTW..What is a SIM? Is that the practice run they do before the first rad?
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Keys-Plez, The Sim (simulation) is the first appointment that accumulates all the data about your breast size, shape, location of tumor bed so that a computer plan can be prepared within a week. They might do a CT scan, X-ray, pin-point size tattoos, drawings on the poor girl with marks-a-lot pen and maybe some stickers; all to get a proper position for you on the table. (I had both men and women techs moving and marking me. They were very professional, very respectful and worked quickly.)
You will need to lift your arms over your head during this one long session and during each treatment. So they will also make a mold for your arms...it's like a small bean bag that they vacuum the air out to make it stiff.
You can request, and I highly suggest, a wedge for under your knees for back comfort. If the room is an icebox, you can request a warm blanket, but they may keep the breast uncovered the whole time...mine always was.
Now your job is done and you might meet with your RO with any questions you might have. Behind the scenes, a staff is preparing your treatment. You have a Medical Pysicist, Dosimitrist, Computer Programmer, etc. all making sure that you only get treatment where needed.
It may seem surreal for the first appointment or two, but you quickly become friends with the staff and each day zips by 'til, surprise, your done!
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Awesome info, SweetHope!
To prepare your skin for radiation, just to get it in good shape, what does everyone use as far as soap and lotion?
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BEFORE
- Soap: Kiss My Face olive oil soap bar.
- Moisturizers: Weleda calendula body lotion and Cetaphil non-comedogenic facial moisturizer (on torso).
DURING
- The above, plus:
- Soap: Johnson's Baby Shampoo as both shampoo and underarm soap.
- Moisturizers: Miaderm (started prior to radiation to make sure it didn't cause dermatitis) during the day on the radiated area; Aquaphor at night (started at #21 of 33). Both applied sparingly, not "slathered."
- Aloe gel without alcohol (but I find it sticky and itchy).
- Cornstarch applied with a stocking foot as a deodorant on the radiated side.
During radiation, you'll be told not to apply moisturizer, etc. within 2 hours before each treatment (or similar timing). You'll want to have your stuff with you so you can apply it immediately afterward. I use a small container in my purse for a light coat of Miaderm before I get dressed. If I'm applying aloe, I use a basting brush to be able to reach the radiation field on my back.
When you've got your sim stickers/marks, take photos so you'll be sure to know where the radiation field is. After the tattoos or your first treatment, ask your RO to draw the field on your back with a Sharpie and get a photo of that as well.
You'll want to use a high SPF sunblock (50 is what I use) on the radiation side neck, arm, and other exposed areas. I was told to do so on my torso as well, but that would break me out, so I'm wearing a men's 50+ rated rash guard tee shirt. Why men's? Because the armholes are larger, so they don't rub. There are several sunblocks without methylparaben.
Miaderm is expensive. Amazon has it, and you're worth it.
Aquaphor is available locally. Try Walgreens, Fred Meyer (Smith's, Loaf n' Jug). It's petroleum-based, so it's sticky (though not "goopy" unless you're "slathering"). It does dry, but slowly. Wear clothes that you can wash in hot water with a detergent that breaks down oils, or wear comfy, crummy shirts and discard them afterward. Many recommend the inexpensive Walmart camis (but I'd rather buy used, oversized cotton tees at the thrift store than support Walmart). Use soft sheets that can be washed hot and that you're okay with possibly staining. Some wear their shirts inside out, but I think a non-snug cotton tee takes care of any seams that might rub in the armpit.
Before radiation, I was complimented by every medical provider--BS, MO, RO, PT, ND--on the excellence of my moisturizing. I didn't think I was doing anything special, but there you have it. Bonus: Moisturizing (including your hands/arms) reduces LE risk.
The machine can feel like you're being assimilated in the Borg Collective. I try to be into the cool science and technology aspect of it, and when I'm positioned and throughout the treatment, I focus on my breathing, smile*, extend compassion to others, and do affirmations of the "I am strong and healthy" and "my body knows what to do to be healthy" sort.
*Research demonstrates that though we smile when happy, smiling can cause us to be happy as well. Happiness is both more enjoyable and better for our immune functioning. (I knew that graduate education would come in handy some day!)
Edited for clarity, grammar, etc.
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