Fall 2013 Rads

cider8

Shawn, it surprises me a little that the time frame is down to 2 months. But I whole heartedly trust the docs. I had bilateral mastectomy with immediate DIEP over 2 years ago. Dr Sullivan is my doctor and I just love him. I had two revisions as well. At the second revision he sent some tissue to pathology and some cancer was found, so I had radiation. Just before radiation started I developed a rash on my other breast, my non cancer side. That rash turned out to be Inflammatory Breast Cancer. The NOLA docs practice had not had a patient where this happened before. I decided to get a second opinion from MDA and they recommended I have the breast removed. So, I had to have another mastectomy and ALND. I had to get rid of all the spared skin. That's the way it goes!

I can still use my hips for recon. Due to the high recurrence rate of IBC I will most likely wait a year after NED to get recon. So I'm looking at 2015!

Who is your doc? Feel free to ask me questions or PM me. The NOLA in September thread is great for support and info. I don't go there much anymore but pop in every once in a while.

TwoHobbies

Cider I am a recurrence so we are in that fight to keep it local together. Lets end this cancer nonsense.



Am I correct in following your story that you had radiation to your DIEP? I'm having radiation to a flap and I wonder if it will do any damage. Two doctors say probably not since I've had it for 2 years. Of course it's not my main concern but I'd hate to have it ruined after all that work.

MsPharoah

Cider, you have been through a lot of treatment!  I hate cancer.  I don't think I say that enough.    Hugs to you and your family as you face this next chapter far from home.

I was getting a visual of people in their PJ's in the radiation waiting room today.  It made me giggle.  Had my 4th treatment today, see the RO tomorrow.  One thing I know is that I have lost all sense of modesty.  Everyone has seen my boobies!!!!

I have been investigating the Lindi products and I think I am going to have them on hand in case the Aquaphor (Mr. Greasy) fails me.

S

cider8

TwoHobbies, I did have my DIEP breast radiated. That breast had a lot of work due to one tumor being close to the surface and having a seroma develop after the first revision. My second revision removed the large seroma tissue (it was distorting the breast) and my doc had to use some lat fat to fill it in. I believe radiation made that breast a little smaller and more firm. I would not say rads ruined the breast. But it wasn't ever as 'perfect' as my prophylactic side, which had to be removed! I was very worried about rads but that worry diminished. That breast is still beautifully shaped with a bit of a 'tan line.'



Thanks for the kind words! I didn't mean to start a pity party for me (not that I feel I am pitied). We all have the intent for rads to keep us from Stage IV. 2 years ago, or even one year ago, I expected to get through treatment and then be done with it, leaving me to focus on recovery. I just keep learning about the reality of breast cancer and it is not all warrior and pink (to me). I treasure the support I get here because in real life there is a mixture of fear and weariness from friends and family, which is difficult to take on and I end up the strong one to support them. Not all the time. But I think you all get how others awareness of what we go through comes in waves while we are in it All The Time.



Big hugs to those still in chemo and those who started rads. I felt much more detached going through rads. I just wanted to breeze in and out, taking weeks to remember the nurses names. We'll see how this time goes.

graceforme

Hello ladies, I had #17 today. 16 more to go. So far just a little red and mild discomfort. Oh and I'm so very tired in the afternoon, I can barely keep my eyes open.

IrishDancingMom

hello...

I just went in to see the medical oncologist today and I'm suppose to start radiation on September 23rd.

I was thrown off course when the oncologist mentioned trying a form of chemo drug before radiation for a clinical trial. I'm going through alot right now and not sure if I should do this. I wanted to stay away from chemo. I'm stage 0 Breast Cancer...had aggressive stage 3 tumour not able to take the hormone pills afterwards (hormone negative). I've had the lumpectomy already.

I explained that I wasn't sure but he seemed to really PUSH this trial on me. He told me it was his decision...but he kept telling me it will help me and said I was a perfect candidate for this trial. Has anyone else's doctor mentioned this trial?

Thanks

IrishDancingMom

So glad you are getting through rad. I heard it makes you tired.

Hugs warrior sista

graceforme

Hi IrishDancingMom,



Are you triple negative? What trial is your dr recommending? I had adrymicin, cytotaxan, and taxol.

lola2u

Hi All,

Worried about rad tx, I have an appt. with an RO next week. Any support, tips, or tricks would be very appreciated.  By the way, I had lump surg rt breast on 8/30, stage 1/grade 1, ER+, PR+, Her2-.

Peace and Blessings

graceforme

Hi lola2u,



I'm more than halfway through rads, had #18 today with 15 to go. I learned a lot by following the "did anyone make it through radiation with their skin okay" thread. I really think emu oil has been helping my skin. Also my RO recommended Lindi skin products and their cooling pad gives me instant relief of the burning, itchy sensations. Miaderm is another product that I use. I apply that right after my treatment as it is not greasy and I go to work right after.

vwbordelon

Cider,

I saw Dr. Chris Trahan.  He explained that they do surgery as a team.  Not sure who the other Dr will be.  I met with my RO on Monday and asked him about reconstruction.  He said he leaves that to the plastic surgeons.  He also said (while admittitng he was stepping out of his area) that there is a "window of opportunity" to do resoncstruction.  To balance when you are healed enought and before/if your skin starts to thicken.  Makes sense but my husband and I were both surprised that this is the first time we have been told anything like that.  Anyway, 3/30 down and just taking it as easy as I can and educating myself along the way.  All of my best to you!

Shawn

Power-House

I am rad starter. I'm in my second full week. Ok so I AM SO TIRED I COULD CRY!!!! I'm trying to stay motivated! They told me I MAY BE A LITTLE TIRED.... but being twice as energetic as most people normally, I thought it would bring me to the normal line. NO WAY. I need a nap every 2hrs!!! I am struggling to stay motivated and upbeat. Am I alone?????? Its been one traumatic roller coaster ride from the random discovery of the lump to the surgery and an entire SCARY summer of waiting for test results! All results were GREAT. . Still feel traumatized by it all. I'm watching my house and work responsibilities slowly turn into a disaster area which is sinking me like an anchor. I have a job and a life. I need a pause button for life!!!!! FRUSTRATED and scared. They said Tamoxifen makes you tired and gain weight. WONDERFUL!!! My morale is really suffering! 5 YEARS of Tamoxifen?!! I feel guilty to complain. I was spared chemo. I feel like a brat!!! Early menopause????Trying to stay positive. I really am so blessed. That too takes energy. THANK YOU FOR LETTING ME SCREAMMMMMMM!!!!!!!!!!!!!!! $&@#%^*==!!!!!!!

I feel so guilty because I know so many have it so much worse.

Making a realistic list. Exhaling biting down and toughing it out! Lets do this!!!

Power-House

Me!!!:(

I did number 13 today. 17 left.

Skin is fine! A little itchy at scar. I use Aveeno twice a day. My skin is naturally light beige color so maybe that's why. So far so good. The aveeno helps.

Brave on!

graceforme

Hi Powerhouse,



I know what you mean about needing a nap. I had #19 today and it really hit me this week. I feel like I can barely keep my eyes open.

MsPharoah

Power House!  You go girl.  Rant away.  You are not a whiney brat, you are in a traumatic situation and I am pretty sure if you are like the rest of us, this is the only place you are allowed to vent.   Because you have to stay strong for family, friends and coworkers, right?  So, you speak to me and for me, Power House!  I'm pi$$ed that I have lost my sense of well being, that I aged about 10 years in the last 6 months, that cancer treatment hasnt really changed all that much in the last 30 years, that such young women are stricken with this horrible disease.  If I sound whiney, so what!!

Sandra

cider8

PowerHouse--it's not a contest! It's stunning no matter how experienced with treatment you are. You'll simply have to find ways to accept what is happening to your body right now. For me, I need support from other BC ladies (here and in person), I need to journal to get the really crappy stuff out of my head, I prioritize (really prioritize!) and I remember that the worst times are temporary. I take one day at a time to keep my sanity. I've tried otherwise and I just end up stressed out and tired. Why not just be tired without the stress? That's how I cope.

LisaSp

Hello all. I am halfway through chemo now and will finish in October, then expect to start rads in November. I'm glad this group has started. Next Monday is chemo tx no. 3, then Tuesday, Neulasta shot and my initial consult with the RO.



I'm scared of rads, particularly as chemo has had me SO tired recently. It's good to hear from you all as I start this next round. Yay, everyone!

L2girl

Greeting to my fellow Fall RAD sisters.



Earlier this summer I was diagnosed with IDC in both breasts (synchronous bilateral breast cancer). I underwent bilateral lumpectomies and bilateral SNBs in August. I met with my MO and found out I don't need chemo. My onco type dx scores were both low, and he said even though I have cancer in both breasts, it doesn't make my prognosis any worse. He said they just go by the worse of the 2 sides, and that is my prognosis. He didn't seem too concerned about the micromets in the node, either. So, on to RADs.



I am getting ready to start next week. Last week I had my CT and planning session, made the pillow mold, got my tattoos (ouch!). Monday I go for my trial run-through, then on Tuesday I start my 9 to 12 weeks of radiation treatment. (6 weeks on each side, but my RO said if all goes well, he may be able to overlap the start of the 2nd side, so may be 9 weeks?) We'll see how it goes. I really like my RO and the office itself, so hopefully all will go well.



I am a bit worried about the possible fatigue. I went back to work a couple weeks ago, after 3 weeks off for my surgery recovery, and I already feel tired! Every afternoon at work, I "hit the wall" a couple hours or so before work is over, then a 45 minute commute home. Hope it won't be worse with radiation treatment.



Anyway, glad I found this thread. I could use some support as I start treatment on Monday!

MsPharoah

Welcome Lisa and l2 girl.



Lisa, congrats on being 1/2 done with chemo. I did 6 rounds of TC. Are you doing 4? I was also very fatigued from chemo. My onc wanted me to wait an extra week to rest before rads and that has been a blessing. I have had 7 of 34 treatments so far and I am doing fine. I power walk every morning and lift light weights. Exercise really helps...it helped me during chemo too and I was able to work through with minimum days off. I am taking an "expecting the best" attitude. Don't be scared. You were able to have a lumpectomy and radiation is an extra cancer killer you want in your corner.



L2girl, I did find that I had to adjust my work schedule a bit because I definitely felt tired in the PM. You may want to make sure your evenings are low key so you can get to bed early. If you have family and friends who can help with running the household, the better. My husband who is retired, has been taking care of me and the house through my treatment and it has been the reason I can maintain my work schedule. I am actually looking forward to taking over some responsibilities with the house when my treatment is over, but for now I am being very kind to myself. I hope you will have time to exercise, rest, eat well and spend time with some hobbies while you are finishing your treatment.



Oh, and the radiation techs in my center are the best...efficient and friendly. It is a pain to go every day, but they make it easier.



Sandra

Fephna

Hi ladies I am pretty new here. I've posted a few times in lumpectomy lounge.

I was diagnosed on 6/13 with IDC. My negative BRACA/Bart led me to a lumpectomy and I chose to have a reduction as well. Bs explained better chance of clear margins and the plus of a lift on both. Surgery was 8/1 and I have been exhausted since. My mo wanted the oncotype dx to determine if I needed chemo. While I was waiting she sent me to ro and she went ahead with the mapping. I was confused cause we still didn't know if I was doing chemo first. So I had the ct, mold made and the tattoos(on my new perky breast lol). My bs said she didn't feel I would need chemo and so did mo but the test still had to be done. My mom had bc twice at age 35 and 42. I'm 41 right in between the ages my mom had it. 2 weeks ago oncotype came back low so no chemo but bs still wanted 2 more weeks to heal from surgery. I feel guilty to say I was relieved no chemo.

My dry run will 9/23. Next day the fun of 33 treatments starts. As the date gets closer I feel the anxiety starting again. Just like waiting for all the test results and the few days before surgery. I have done so much research on rads. I know it's not gonna hurt. I am worried I have such sensitive skin. Also worried cause incisions are closed but still so new, red and bumpy. I haven't been able to use any vit e oil or anything yet for scars. Ps said not yet. Ro said I can't use anything at all on breast during treatment. No deodorant either. That stinks!-literally lol. The last thing I worry about is fatigue. I'm a single mom of 2 boys. I am on short term disability which I'm great full. I work in retail and since surgery I'm exhausted, arms are still weak. I'm choosing to stay out till treatment is over.

I am so happy to find this thread. I look forward to see how others are doing during treatment

lalady1

Hi ladies - Glad to find this group! I am 5/28 and getting sleepy already. I'm not pink yet, but using Aquaphor at night. I am driving to work each day (as my nuking is in the morning). I intend to work each treatment day, but may work from home if the last week makes wearing a bra (or a blouse) impossible. I already had my exchange -but that side is smaller than the other, so planning one more surgery to even them up after rads. I hope they can make the foob look better, it's rather flat on the bottom and hoping rads doesn't shrink it further. FYI I was in a car accident two weeks after the exchange and was very frightened that the silicone would burst - so far so good. The foob had a bad bruise but healed ok. Plus rads is way better than chemo - no needles or chairs!

ps. Powerhouse I need a nap after a nap at night. lol

redboobaloo

Hello to everyone.  Another sleepless night in store for me.  I've learned so much from all of your posts.  I've concluded that my RO failed to inform me of many things.  I've finished 5 of 34.  Next treatment I will definately be asking questions. 

lpc

Good morning



I am set to go to simulation tomorrow and start rads the following week. Not looking forward to more treatment as 6 week break after chemo has been so nice. I will be having 28 treatments. Glad to have found group of women to go through this with.



Lisa

canuck46

Hi - Also new here - am in lumpectomy lounge as well.  Meeting w/RO tomorrow then leaving for 1 week for family reunion.  Hope to start RADS beginning of Oct.  I'm learning so much from all you terrific ladies.  Have lots of questions for RO.  Thanks for all the sharing and caring

Marilyn

LisaSp

Thanks Sandra. Those were very kind words and I appreciate them. I've got 4 rounds of T/C to do, no. 3 is tomorrow.



Another Lisa in Md going through rads this fall! Welcome!

jbdayton

I am joining this group as well.  Some of you I am familiar with from the August Surgery group.

Met with my RO on Friday, will have to do 5 weeks with no scar boosts.  Set up appt. will be Sept 27.  So I guess I will start during October.

Have appt. tomorrow morning with my PS was scheduled to get my first fill.  RO does not want any more fill done until after rads.  I guess I will let them decide.  I do want to see the PS to check all my incisions since the tubes were just removed last Monday.

Ready to get to know everyone here as we move through this process.

Prayers to all.

CarlaK

I'm starting rads on 9/30 so hello! I had my simulation already (3 weeks after my mastectomy-keeping my left arm above my head was hell!). My biggest worry is fatigue. Seems like every time I'm beginning to feel like my old self it's time to get knocked back again. I've been out on disability during chemo and post mastectomy but need to get back to work at least part time next month so I don't get hit with paying for COBRA.  Trying to set up working from home-that way I can go braless as I answer emails (and sneak in naps)

Smooth sailing to you all....Carla

carla53

Simulation appt is in 1 1/2 weeks. This Wed. Will be 3 weeks post chem. Yay!! Usually at this point after a treatment I'm feeling pretty good. Not! Would like to kiss this fatigue goodbye and kick it out of bed. Hoping to have one or 2 weeks of feeling good before rads. Glad to have read much of summer rads and am pleased to he here with the fall rads. Have learned a lot. Hoping the best for all of us.



Fephna Nothing to feel guilty about that you didn't do chemo.We all have our journeys and they all differ in some way. The common thread is we are all attempting to beat the beast of cancer. I am glad you missed the chemo bullet.



Jeannie my RO wants some of my fill removed. Since there is only one side filled I supposed I will be a little lopsided. Guess I will stuff my

right side of my bra with tissue. I remember doing that a few times in

fifth grade.



Maryln have yourself a great time at your family reunion. Couldn't think of a better way to spend time between treatments than with family.



Sandra it's wonderful that you have such a supportive husband. Sounds like a keeper.



PowerHousee your not a brat. I agree with you , sometimes it's frustrating and scary. And sometimes I want to scream too. If only I had the energy to do so. Lol.



Best to all - Carla

carla53

Oh my. Just noticed there is another Carla. Hello CarlaK. Also notice you too are from California. May I ask where in California? I'm between Monterey and Santa Cruz. Good luck on getting back to work soon and getting set up at home for working.



Carla

CarlaK

Carla53-hi, always like meeting other Carla's, especially when spelled with a C! I'm in the flatlands, about 40 minutes from Sacramento