DCIS girls starting radiation June and July?

Infobabe

I am going for a simulation on June 11.  I don't know the exact date rads will begin.  I am supposed to receive 25.  

I am wondering if there are any DCIS patients out there also starting radiation so we can compare notes, number of rads including boosts and stregnth of radiation, helpful hints about clothing and salves etc. and complications.

If it is alright with you, I would like to compile your answers on this post so we can better assimilate the infomation.  I will edit as I go along. I will start with my own case situation

Simulation:

June 11, infobabe

Start date: 

June 18 Infobabe 

End date: 

July 23 Infobabe 

Number of rads:

25 infobabe 

Helpful hints:

Complications: 

Oncotype score:  

No Oncotest done infobabe 

Moderators

Hi Infobabe,

While you're waiting for others to join your group, you may be interested in checking out the Radiation Therapy section at the main Breastcancer.org site. This section includes helpful tips such as what to expect, how to manage side effects, and myths about radiation.

In addition, you may want to pop in and say "hi" to the June Rads girls on their thread in the Radiation Before, During and After forum.

Hope this helps and happy posting!

--The Mods

Infobabe

Moderators 

I have already read that page and do monitor June/July rads.  I was hoping to get one going with more organization and more focused on DCIS.   No takers, I know.  Makes me wonder if most DCIS is not getting rads at all.

I appreciate your interest. 

julz4

Infobabe....I'm here not sure when I am gonna start my RADS as I am still pending on possible tests (HER2, & possible Oncotype testing).  I go on the 20th for my simulation visit for RADS.  My RAD Onc said that I am having 27 rounds with 5-7 boost's.  Thats all I know for now.  This is the one area of my treatment that I have not investigated in depth.  Keep the info coming please!

Infobabe

julz4 

Seems like an awful lot of treatment to me for DCIS.  I am scheduled for 25 and I think that is a lot.  Don't know if they want me to do any boosts.  I never get to talk to my RO.

julz4

Info...from what I was just reading it sounds like each treatment slightly damages the cancer cells.  It's an accumulative effect. You have many rounds as to complete the damage of those cells.  It doesn't happen with one shot or you have major problems with damaging other tissue that shouldn't be damaged, because they would have to use a very high dose to accomplish that.  I will have to read more. 

As for me my DCIS has several micro invasions, is fast growing, & will not respond to hormone treatment.  I may be getting more than RADS that is why I am not sure when I will start this all.  Probably in July...the sooner the better at least something to be done for peace of mind.  My core needle biopsy scar is right between my CNB & mass removal incisions.  That little tiny thing is bugging more than my surgery incisions these days!

proudtospin

wow, I always had the opportunity to talk to my RO, he was wonderful and even as I ended his treatment made sure to tell me I could call him if I had any questions later

Infobabe

proudtospin 

My RO is very nice and has a good sense of humor it is just that he is busy and I have had no opportunity to talk to him since they took out the Mammosite balloon May 2.  I will probably get to know him better if I actually do proceed with rads. 

Infobabe

julz4

 

 See if this is helpful.

 

http://www.sabcs.org/PressReleases/Documents/Solin.pdf 

agrp1

I'll join you when I know more, infobabe. I had a preliminary consultation with RO before surgery, and have another appointment in about 10 days to get my schedule set. According to my pathology report, there was just a tiny amount of DCIS (1-2 mm) left over after the biopsy. I would love to go in to that appointment and have her tell me I don't really need it, but I'm not expecting that at all.

Infobabe

 agrp1

I am obsessing about this Oncotype thing.  I just read that the DCIS has to be at least 2.5cm.  Mine is 1cm.  I need to get this checked out.   I might not qualify in any event.  Rats!

EDIT  Here is the quote:

 Looking at it again, is that smaller than 2.5?

Note however that the test is for patients who have low or intermediate grade DCIS that is ≤2.5 cm in size, or high-grade DCIS that is ≤1 cm.  

julz4

Info....I guess I would qualify with 2.8cm. Let me know what you find out, as I don't go till the 18th to see the MO.



Agrp1...I go on the 20th for the simulation at the RO. I already had the enitial consultation. They asked me a bazillion medical ?'s. How do you remember the dates on 19 surgeries & procedures!!!! You need all the meds you might be taking too, vitamins included!



Oh just a reminder if you haven't had a dental checkup, cleaning, or work that needs done. You need it done before you start! Haven't had the money for major work that needs done. I'm going to a clinic on Tuesday. I have a really bad tooth maybe more that needs pulled before I start. Mouth is hurting bad this weekend! I have dental insurance, just can't afford the 20% copays for what needs done! The cancer care coordinator said not to worry it will be taken care of! Very Thankful! Just can't wait for one less pain!

agrp1

Thanks for that tidbit, julz. I am due to have my teeth cleaned, so I will hurry up and make that call. I hadn't even thought of that. I had planned for this summer to be the year that I got a crown on one of my teeth, but alas... it is the summer of cancer instead. Maybe next year!

julz4

Agrp.....I didn't think of it either. If it were not for the hurting tooth. I wouldn't be getting them checked!

kcobp

I just finished. I had the canadian protocol, 16 treatments and 5 boosts. I bought a big jar of aquaphor & I apply it very heavily. I found a bra by bali with no underwire & it comes in sm, med, l & xl. It's very comfortable & actually supports. It's microfiber so it's soft on rash.

julz4

Kcobp thanks so much for the info. I hope your feeling ok. Did/are you having any fatigue? I'm wondering how bad it's gonna be? I'm a CNA in a nursing home. Not sure when I'm starting RADS. My first week back after being off for surgery I work 6 nights out of the first 7! They wouldn't change my schedule! I work 8 days every 2 weeks! I was exhausted before I was DX'ed! All night shift too!

mnkid

Thank you, Infobabe, for starting this discussion here in DCIS-Land.  I read some of the threads on the regular Radiation Board but didn't feel like I quite would fit in over there.  DCIS is a different animal.  I'm going in for my initial consults on June 25th and expect that I will be starting radiation soon thereafter. 

I'm apprehensive about radiation but I know why I'm supposed to have it and I think it's worth it.  It's not really how I want to spend my summer.  I worry about fatigue and if I'm going to be able to work.  I worry about soreness and how my breast is going to look and feel after it's all over with.  And my Mother never approved of tattoos!  Can't they just use a Sharpie?  Did I mention that I'm a worrier? 

I'm stocking up on aloe vera gel and aquaphor, investing in some tank tops, some Tom's of Maine deodorant and cornstarch.  One nice thing is that I work from home so I can have some flexibility in attire and work hours.  I'd never wear a tank top public.  :-o 

So, I'll be happy to join this discussion thread.  Here's to us! 

BLinthedesert

Hi Ladies, I am almost done (6 more treatments).  I am a runner and have been running nearly 60 miles/week all the way through (and working full-time).  Most of the side-effects (for me) did not hit until treatment 15.  I have a pretty significant rash and redness, that I control with hydrocortozone (both over-the-counter and some prescription stuff) - it is worse at night.  

The fatigue is funny, it can be pretty bad, and is sort of hard to describe.  It hits me in waves, sometimes it is pretty significant, but if I *have* to, I can push through it and 1/2 hour later I feel ok again. I do find that if there is any way to lay down when it hits I feel much better (I brought a lawn chair in to my office and have actually laid down on it for 15mins or so a couple of times).  Everyone is different - some people don't even have serious fatigue, and some have it worse than what I have experienced.  Regardless, it shouldn't really be an issue until week 3 and beyond.  If there is anyway that you could ask for some flexibilty in your final weeks of treatment (an extra day off, or a couple half-days) it would probably help.  I also find that after the weekend, when I can nap more, Monday and Tuesday are pretty good - I feel final - even "normal";  then I cummulatively get more tired as the week progresses, especially if I don't take any time off or nap.

I haven't have any problems wearing a Coobie bra and my usual tops.  I also cheat and wear deodrant if I have a meeting or something -- hasn't been a problem for me (though it might if you are getting direct treatment to lymph nodes under your arm).  

Good luck! 

julz4

Mnkid as far the tatoos go I was told at my center it would be just a few dots that's it. So your momma shouldn't have a problem! ; ) I wish I could work from home at least till I am through the treatments. I wonder how I will keep it together when I have to take care of any of my residents with BC!!! I'm glad I'm not working today! ; (

BL....Thanks!!!! The info helps!

mnkid

julz4, thank you for your work.  My sister is currently in a care center and I know all that you do!

BLinthedesert, thank you for your insight.  I'm now going to google Coobie bra.

Infobabe

I should probably delete this thread but I don't want to silence all the posters here.  I canceled rads last Thursday.  Now I have to find another path.

BLinthedesert

mnkid -- they are awesome, and just right for padding my lumpectomy side to even me out.  I love them!  

Even though I have 4 tattoos, the techs still "marker" me up every day, so I have little stains in my bra's -- but it is of little consequence in the big scheme of things.  I wait until I get home to lather up with the goey stuff (aquafor), during the day I use Miaderm and aloe (and now hydrocortizone cream).  Other than the rash (and redness) my skin is holding up really well.  I am small though (34 B -- really small B on my lumpectomy side).  

Infobabe

 mnkid

Best wished to you,  mnkid.  

If you don't want to lose a breast, this is about the only thing you can do.   I think you will do just fine.  There is a lot of support here.

julz4

Info don't delete! Maybe you should ask the Mods the best way to go about doing this. As you probably know you can go in & add to your original topic. This way we don't lose the ones that have come here so far. Eventually it will take off (hopefully not too many this time around) & we will continue on. The thread starter is always welcome no matter what path she chooses!

Infobabe

No, julz4

I have no intention to delete.  I wouldn't interfere with convesations started here.  Don't know if I could anyway.  I could only delete my post.  My original question is no longer current.

Myna

Hi All.  I have completed my 6th treatment of 34 scheduled (27 whole breast, 7 boost).

Starting to get a little painful and a bit of pink is now at the scar site but all else is OK. RO said this was normal and the redness and breast pain would increase as treatment progressed further.  At least she is honest about it.  Started taking Aleve for the pain since Friday as the RO said that is OK.  I am using the calendula gel from Boiron and the 99% pure aloe vera gel; the rads dept said both were OK to use.  RO sees me every Monday, so she is keeping an eye out for significant side effects. 

I was told I was given the # of rads due to the grade 2/3 DCIS I have (had) and the size  (about 2.6 cm) which puts me at a higher risk of recurrence at the lumpectomy site.  I am happy I have really great MDs taking care of me.

Good luck to everyone!

ro-berta

hi infobabe, jsut waiting to start rads myself but postponed due to more surgery first. There is lots of info out there for me it was a matter of stumbling and fumbling around. I have made up my shopping list already for things that will help with the discomfort ( any excuse to shop,hahaha) like nice soft wash cloths, cotton t-shirts,put the bras away for a while girl! I think the most info that stood out in my mind was the skin against skin friction during rads. This will be my 2nd surgery lumpectomies, inpast month apparently they either liked me so much hahaha, or not everything was gotten. All together i have had 5 surgeries on rt. breast the last one was cancer. This has been going on for about 10 years for me. I think my rad schedual is everyday for 6 weeks but that could change as we know we all live on the fly. Take care girl

julz4

Well I was put on the list for holding off on RADS for a bit too.  I went to my MO for the first time yesterday.  There wasn't enough "micro invasive" tissue to get an accurate HER2 test.  So the test may still go on as the Genetic Counselor still wants it done.  Since I have too much Heart Attack, Stroke family history, & also high BP, high cholesterol, minor heart murmur for myself.  The MO says that the Risk of Chemo, Meds far out weigh the benefit for me.  So I went this morning for the BRCA testing & counseling.  There is Maternal Great Aunt & her Daughter that had BC.  Then Maternal Uncle with Prostate CA & my Grandfather (Uncles father).  If these tests come back positive then BMX might be my next step.  So for now I am going for the simulation tomorrow but setting up my first round will be put on hold until test's answers come back.  Possible no RADS at all if surgery.  We will see.  7 to 10 working days wait & she also put a rush on it so she hopes to see it by Monday!  Never a dull moment! I will let you know how things go!

Infobabe

ro-berta 

That skin on skin made an impression on me to.  I bought the corn starch baby powder which is very useful in any event, also from the fabric store some 100% cotton flannel.  Bought the aloe with no alcohol, so I was really ready to go.  

But I did cancel rads and am now pursuing other treatment which might include a mastectomy.  I am also getting a path report from Dr. Lagios. 

 Best of luck to you. 

Infobabe

 julz4

Your docs seem to be taking everything into consideration so you won't feel like a number.

Since you are still DCIS and hormone negative, are you considering MX?  I really hesitate to even mention it as I shrink from it too.  To me it looks like the safest, but then, I know nothing.  You have good doctors to guide you.

julz4

Infobabe if the BRCA testing comes back positive I am considering a BMX. In fact I wasnt adverse to loosing my breast in the first place for the original DX of a less than 1 cm spot of DCIS. If not then I will do the RADS & pray I am not in the 5% recurrence rate over the next 5 years. I think that is my risk rate. With the BRCA gene it's a lifetime risk of up to 87%! I know I can't live with that! 5% is doable for me!