Winter 2013-2014 Rads

I guess I get to join this group...I have my staging tomorrow and probably start the next week. Doc is considering subclavicular radiation because of isolated tumor cells (<20 cells in SNB). Has anyone else had this? I'm not sure what to think, otherwise I think it will be pretty standard. 28 sessions over 5 weeks or so. I'm nervous, but ready to get going on this.

keep the faith, 

Last chemo ! I was SO happy that day, still fighting all the SE but knowing it was coming to the end.

The port removal is up to the patient generally. I have been advised to keep it, stage 3. I finished rads last Friday, I will discuss this again with MO tomorrow. If they are not going to do labs, I will have it removed soon. I have good veins, IV do not bother me. 

Rads are itchy and a little shooting boob pain, but you will do great. You have weathered the chemo storm, so this part takes you to the finish line..

peaches, 

Sorry, rant away, I would be upset also. I was lucky, did not have to miss any appts. Through this bc nightmare.

Too bad your center won't stay open for the ones that live close. I sure hope this storm is not as bad. 

Keepthefaith - port removal seems to again be one of those things that differs between different patients. With my MO's approval I had mine removed 3 weeks PFC (almost a week ago) because my RO was gently suggesting that it would be easier to do rads without it as the port is on the same side as the rads will be.  My MO said we didn't need it anymore so I went ahead with the removal. My RO did want the removal to be at least 3 weeks before the start of my rads so the incision would be healed. I do know that when some women have had chemo first their MO's have wanted to wait until after surgery to remove the port in case they found out additional information during surgery that may have indicated further chemo.

Grace, I have never heard of them rerunning test results so  long after the fact. From what I know, which is little..lol...Herceptin is not as toxic on the veins as A/C. My SIL did the whole tx with no port, but I can understand wanting it back in, ask your MO...

Peaches, So sorry about the delay!  You deserve a pity party  

Keepthefaith, When I saw my MO 4 weeks after my last chemo he was wondering why I still had my port and got it scheduled to be removed as soon as my SO was available.  I do know other BC survivors that were told they had to keep theirs until after rads. 

Pam358, I'm surprised your port is on the same side as your rads will be. I thought it was always on the opposite side.

I started with aquaphor this weekend because my breast is really, really pink and I have radiation rash. It doesn't itch much with the aquaphor, just looks ugly.  Abandoning the bra more and more...  7 more + 5 boosts to go.

Mouse,

I have been advised to do a rads course similar to yours but with one extra boost.

I just got #25 of # 28 to whole breast and supposed to do 8 boosts after that to just tumor site.

Having some tense moments trying to talk to my RO about stuff I have read which cause me concerns . He gets visibly irritated and even left the room once as if to control himself. Says I keep asking him same questions ( I do but oonly because it doesn't give a clear answer!) and that I am questioning his judgment and he takes this personally.

So stressful.

So far, skin intact but red and very tender as if I have been beat up, especially sensitive in lower armpit which is only getting radiation because no one to exclude it from the usual method of radiation with tangents vs 3d or other.

But have 3 more WB and 8 boosts and just praying that I can get through and past this sometime in near future.

I hate that it's always on my mind.

So much activity! Too much to address individually right now. Welcome to all newbies - you will get thru rads just fine. Congrats to those finishing up! We are all radiant ladies - so radiant we all need shades! I am 10 days post rads!

TB90 - I too had MX w/o recon and had rads. I had 33 rads (28 reg & 5 boosts). RO also told me it is harder on our skin, but nothing we couldn't deal with. I had a bolus (just wet towel for me, no beeswax!) for the first 20 or 21 rads. Then had week without, then had bolus again for boosts. I started out with some rash/itching but cortisone (in addition to lotion they gave me) worked for that. My skin held up pretty good until the last week or so of reg rads, then I had breakdown (blistering/raw) in my armpit. RO gave me rx for silver sulfa (cream they use on burn patients) which helped some. Armpit didn't get hit with the boosts so that is starting to heal up. Area around my lymph node incision and my "dog ear" though got worse this week & that area is breaking down now. Using lots of cream & lotions and taking pain pill at night. Also try to "air out" the girl(s) as much as possible!

TB90 feel free to PM me!

Sending healing thoughts to all - we are survivors! 

TB90 My tumor was by the chest wall also and I was wondering about that too.  But  I guess everybody's different, so there's no telling.   I just started first day of week 2 today and so far so good.  Just had some minor itching towards the end of last week for a couple hours right after treatment, but it went away over the weekend.   I'm curious, if you had DCIS and an mx, why is the doc doing radiation?  Is the DCIS in the other breast?       I sure don't envy you with that cold up there! We have have friends on the Boundary Waters in MN and also Duluth and it's just been one crazy cold winter.  Italy sounds like an excellent idea about now!

Junipergirl,  Good thing you're going towards the finish line and will be done soon.   Today was my Mon. meeting with the onc.   I told him that I had itching last week right after treatment (itching was gone today after the weekend).  So he went over to where the nurses area is, and the nurses were away. He muttered something under his breath about the nurses not being there, and then said he doesn't know where they keep any of their stuff. So he dug around in the cabinet and said here,  try this. It was a couple of real tiny tubes of Aquaphor.  I need something for acute itching for a couple of hours right after treatment time.  Anyway if it was dry skin, those tubes would be just enough to cover my big toe. lol    Is it OK just to use Benedryl or poison ivy itch cream and just wash it off before bedtime? 

I know they went to medical school, but are radiologists primarily physicists?  He seems more like a scientist.  Are the nurses more trained medically in terms of reactions and such?  As long as he knows what dose to give and where to give it, that's what matters in the big scheme of things I guess. 

Hi there. OK so CT Simulation today and appointment with my RO. I had about 40 questions. He started off talking, but I would pause him to write the answer beside the question he'd already answered without me asking. Eventually he was just quiet and I started in on my questions. He was great, answered everything concisely.

Then time for the simulation. These women have me in the most contorted position. Turns out my buppies like to visit my armpit and my neck when they are prone. Lol. So I have to squooch this and elevate that and duck that shoulder and ABOVE ALL relax! 

They lied to me - they said the tats wouldn't hurt. I'm terrified of needles so the student does the first one and I am keening through it all - took about half a minute. The therapist says nope she needs it fast and rammed through the rest in about 14 seconds. I cried, then felt stupid.

I'm lucky, I get the Cdn protocol, so only 16 + 4 boosts. I'm so happy. So now I wait for the phone call that says okay cummon in for your rads.

Only question I didn't ask, because I didn't know to was... I'm already at 11 weeks, (don't ask - it was a disaster) and rads won't start for 2 more so I'm outside the 16 weeks with the 4 wks of rads. Is that how it's counted? Or do you have to start within 16 weeks. 

Thanks. Have a nice evening.

I did it, I finished rads today. It was bitter sweet after I met with the doc everyone came around while I rang the bell then the staff presented me with a knitted shawl and a bracelet. It was beautiful. Although I didn't have any issues besides some mild fatigue and some itchy spots I don't think mentally I could have made without the fabulous people on this thread. Even though some stories are sad it is encouraging because it shows how strong you are. Great big hugs and kisses to all.

OK winter radiants - I'm moving ahead finally.  Appointment w/the RO last Thursday.  She listened to an hour of my questions.  Mapping & simulation last Friday.  My right side is covered w/red/green/blue/black ink.  And the plan is clear tape where the lines meet.  Because I'm sensitive to tape, I told them to go ahead & do the pin-point tattoos where it was critical since I probably couldn't keep the tape on or they'd be redoing the simulation before we were through.  So I have 9 tattoos even tho this MD Anderson center doesn't usually tattoo for breast cancer anymore.

I had a BMX in Feb. 2011 that got clear margins, clean SNB and exhibited only DCIS, so I went ahead w/reconstruction and no further treatment.  Had a chest wall recurrence in March 2013 - now IDC, Grade 3, HER2+,  that didn't totally respond to chemo, so after ALND surgery when the BS discovered one positive node, I did more rounds of different chemo.  January has been a rest & test month trying to build my body & blood back somewhat.

Team Kim's questions were great. Given that every doc is different -
here are some of her answers. I will have external beam rads to the
right reconstructed breast and the "draining lymph nodes." Radiation
will go to midline. I will be on a totally flat table to minimize
damage to the lung. They expect it to damage some of my R lung, but not
my heart. They do utilize 'breath hold'. The risk of a second primary
tumor at the site of recurrence is very small, which of course doesn't say
anything about mets to other places. I may have a lump in my throat
& trouble swallowing as rads hit the esophagus. There is a 2%
chance of bracheoplexus problems. There is a 2% chance of rib fracture
for the rest of my life.

RO & I agreed on 50 grays for 5 weeks - no boosts, concentrating on the chest wall & the lymph nodes since I have no breasts & the recurrence was not behind the implants.  She said 60 gry was optimal for my situation but understands that I'm very concerned about: a) capsular contracture of the implant that's been in there since Sept 2011; b) lymphadema since the surgery already took all the level one lymph nodes and she will be radiating all the level 2 & level 3 nodes;  c) neuropathy since I still have some very serious problems 6 months after the taxotere chemo.

There will probably be fibrosis & scaring & the tissue will be tighter, so she does expect the R implant to at least be "pulled upward" by that & may be disfigured.  She has personally never seen an implant that "extruded".  I have 11 exercises that I'm supposed to do 3 times every day - 5 to 10 reps - to keep stretching the tissues.  That said, there is a 25% chance of recurrence in the same area if I don't do radiation vs. only 5-10% if I do it, so....I'll start Thursday 2/13.

I was a former long time smoker so I had a low-dose spiral CT done today to get a baseline of any prior damage to the lungs, since rads will damage at least a quadrant of the R lung.  Also ended up getting a PFT - pulmonary breathing test - to determine the volume of my lungs pre-rads.

She recommended pure Aloe &/or Aquafor to start.  Because of my skin, she also said Miaderm would be good.  I will get Silvadene if my skin gets really bad.  She recommended using 3-4 times a day but not more than 4 hours before treatment.  She did not agree with my derm doc to use Elocon once a day as a prophylactic for radiation dermatitis - so we'll hold off on that.

She approved my re-starting Omega 3/fish oil but NOT Vit E, or any other high dose antioxidants (Vit A, C...).  She approved the 5000 mcl of Biotin in addition to my regular supplements - Centram Silver, Calcium, Vit D, Vit B6, Vit B12, Acetyl L-carnatine.

Her most ardent recommendation was DRINK and don't get dehydrated.  Of course that's a problem for me, but I'll keep trying.  Of course the consent I had to sign has LOTS of scary side effects that it says may be worsened by chemo or surgery before, during or after rads.  Hmmm - got it all going for me.

The best part was - after the simulation & mapping she came and stood by my head while I was still in the 'mold' and asked if I had any other questions.  I laughed and said "wasn't an hour's worth enough yesterday?"  My RO is definitely not just a physicist.  She's a doc w/a great bedside manor & lots of patience.  And wants me to email her personally if I have any other questions or concerns.

Sorry for the length but wanted to share all the info I received.  I promise to be more quiet going forward unless I need to whine.

Peaches - I had Herceptin April thru September 2013, stopped
for surgery & then had to stop because the 2nd chemo (Adriamycin) is
also very toxic to the heart. Just started herceptin again 2/5/14. I
also had to put everything off for a week in the first round due to low
blood counts. I've never heard that the days are that critical but I
will be asking.

RedReading:  My surgery was 9/24 & my last chemo 12/11 - so I'm way outslde the parameters what ever you were quoted.  My MO was the one who said to take the time off.

TB90 & LilyLuv:  I was not offered radiation after my original BMX surgery - since everything was clear and that was the point of mastectomy instead of lumpectomy.  I likely would have said no even if it had been discussed due to the same 3 issues above - capsular contracture, lymphadema, neuropathy.