Winter rads 2014-2015

WndrWoman

Beachbum102 My breast reacted like that the first week but then it didn't do much more until a few weeks later.

Grrrrr...they just called - machine problem - I am eager to get the boost going and count down the last 5 treatments.

bellegirl

Heading in now for treatment #22 out of 25. Almost done!

However I have a rash all over my left chest area, and the skin on the breast area and underarm is all red. Very itchy. The rate of skin trauma seems to be accelerating daily now.

Like children sometimes ask at the table, I just want to ask the RO "Can I be done now?".

I have to do the breath holding, and have been concentrating on that. Today will try to imagine the ocean waves though!

mqt64

quiggy, I'm so glad someone finally listened to you! I think it is when we all tend to cry. I teared up the other day when the tech said they'd get me through.

Justjean, you have been through so much..

Gentle hugs to both of you.

PS: I'm in on the boat drinks

CoyoteNV

I'm going to throw something in here that does not sound very positive. It's not intended to be a "downer" or discouraging.  I generally tend to function in "positive mode" because I need to.  If I swing the other direction, 1) I become a vegetable; 2) I bring all supportive people that I love and care for down with me.  An aside before I get to the point - Have you noticed that you are required to buoy up those around you by being slightly dishonest about how you are and how you feel? - Anyway, I know several ladies who are 10 to 20 years out on their dx.  They still live with this everyday.  There are moments that it is not at the front of their minds, but it is a fact of life that they never, never, never forget.  Those of us who are recurrent recipients of this gift, definitely understand that the potential of a bad scan is not only possible, but probable.  My RO and MO actually both said catching the "next one" early is the only answer.  "Vigilance" was their word.  (Plus a low fat diet and exercise will improve my odds of delaying a return.)

I had it pretty easy as far as my skin falling apart during radiation goes.  It didn't.  I kept waiting but it didn't get bad at all - uncomfortable - yes, nasty - no.  I try to keep in mind that I can handle anything for the short term.   Just after my node surgery for my recurrence, my XL size horse stepped on my foot and would not get off.  I assure you that it hurt big time - like most physical accidents do.  It passed. 

Situations like yours, JustJean, are what I fear the most. Over and over and over. My heart goes out to you in the greatest way.  You are truly my hero. You are one of the strongest women I have ever encountered and a gift to all of us. The last decade has provided you with insights that few people possess.  You sometimes sound as if you are at your wits end, and I suspect that you have little tolerance for fools.  You have earned the right to feel it and say it. Thank you so much for sharing yourself with us.

Anyway - my conclusion is that it's NOT "over". It will NEVER be "over" for most of us. It changes our life, our priorities, and our perspective forever.  How we choose to handle this new normal is up to us as individuals.  The doctors don't tell us this.  This is a more difficult reality for those of you who are far younger than me. (I'm the grandma aged lady that too many folks dismiss as over the hill these days.)  I sadly see too many young women dealing with this disease.  If there is advice in this from me, it is this. Try to face the fact that this is 99.9% likely to change your life forever.
Use it as a catalyst to make the changes be in your best interest.  Become the better person for it - however you define that. Find a way to be the dinosaur that leaves a footprint in the rock.  Make your life matter.  After you have those moments when you throw yourself on the floor, kicking and screaming, cursing fate and asking "why me?"  get up and move on. 

Thank you for allowing me to share these thoughts with you.  If it matters to just one of you, I have left a foot print.

WndrWoman

Just got an offer from Lands End - 20% off swim tees with UPF50 coverage. There is a long sleeve pink stripe one that gives $5 of the cost to Breastcancer.org. Offer ends today. I understand we need something like this after radiation. I can't wait to soak in water and reach the healing stage when I can let the shower run directly on me. Life's little pleasures.

Beachbum1023

Hi bippy625, I was scheduled for mastectomy and reconstruction but it couldn't be done after the mastectomy. The tumor had attached to the skin, so the PS had to rearrange the skin so I have to heal before any reconstruction. Big surprise when I woke up, but it was so numb I couldn't feel it. But now at this stage of the game, I am not so sure I want to do. It is a large time and money investment to get through it, so I think I am going to pass. But I am 58, so that plays into it also.

I am going to rads #4 today, nothing yet! Has anyone had a sore throat? The nurse said it can happen. And anyone with lung issues? Thanks!

CassieCat

CoyoteNV, THANK YOU for that. I loved what you wrote and it completely resonates with me. I live in fear of when I have cancer again. I do not have confidence that it will never return, or that I won't have it somewhere else. I've had it once, and I know now that my body can be susceptible to it. I am doing what I can to prevent it as best I can through current treatments, diet, exercise and changes in my life to help with stress management. But I can't imagine ever being "done" with cancer. My scars are covered and once my hair grows back I'll look like I'm all better. And I know that I am, for now, but I have no denial that it's guaranteed forever, nor do I feel "all better" inside. People who are all better don't cry on a daily basis, and I still seem to given the right circumstances. Sometimes they're happy tears, and sometimes they're not. I think I'm at the point where I need to seek out a support group, or a therapist who understands cancer survivors.

I haven't even started rads and I'm sidetracking the rads thread...forgive me?

PoppyK

I started noticing a lot of redness during week 3. By week 4, I have black areas under my arm and under my breast.

I saw my RO today. He told me congratulations, only 3 treatments left. You can go back to your life again. The nurse told me I should celebrate when I'm done next Tuesday. Hard to imagine being there.

Coyote's post excellently summarizes one of my big concerns through this whole process. It will never truly be over for me and I will never be the same.

JeniferE

Thank you, CoyoteNV, for sharing. You are an excellent writer. Your reflections and wisdom unite us and spur me to think about living the rest of my life intentionally. I can't help but assume that I will have a recurrence. The thought will not leave my brain, although I think that once I am back working, teaching, volunteering and enjoying "normalcy" I will be able to put these thoughts on the back burner. I feel great empathy, too, for those who are younger. (I'm 57.) My MO has asked me if aid like to volunteer to come alongside future cancer patients as a support. This seems like a great thing to do with the rest of my life. I also want to find a way to just enjoy the moment, significant moments as well as the mundane. I love the idea of leaving a dinosaur footprint. I do love dinosaurs, and often feel like one!

Now, back to radiation...

WndrWoman

Big footprint Coyote. You expressed just what I meant about not wanting to ring a bell or get a certificate at the end of rads. It is just one chapter. I don't know what comes next but the threat is always there. My RO tells a warning story about a nurse with breast cancer who got lymphedema 26 years after her surgery. But what I hear is that she was still alive 26 Years later. At age 68 I like the sound of that. A friend my age got BC at 39. She is still fine and I especially wish that for those of you who are at the younger end of this group. I know I was most thrown by my diagnosis shifting from IDC at biopsy to ILC after my lumpectomy mainly because it is trickier to catch so vigilance is harder. February 12 I begin a survivorship group and I know that living with the fear of further cancer is discussed.

mqt64

Thank you Coyote NV for expressing so well the feelings many of us have difficulty sorting out. Have you considered writing a book? I'm serious. That way more women and perhaps their families/ supporters could see your dinosaur print. In your spare time of course! Thank goodness we have each other! For all you snow bunnies, I saw a snowbow the other day driving home after rads. For the rest of you, it forms from snow and sun instead of rain and sun. Made me smile because I love the song. Escape!

meanmomto3

Sorry to have been away so long. I will post more about that later... I've been reading about the extreme skin reactions. I was there, too! Finally the right combination of cream and gel worked for me. If you click on my name, it will show all my posts, with the names of the creams. I'm away from home right now, so I'm not sure. It took 5 creams before I got it right. For open wounds, my RO and my new wound care doctor swear by medihoney. I'm being treated at a military medical facility that also happens to have aworld-class burn unit, so they're on top of the bests treatments. Ask your doctor to order medihoney, if it's not something they already use. We have to be loud, sometimes, to get the care we need.

http://www.dermasciences.com/medihoney

meanmomto3

Okay, so this is way too much info, but I think we all should be more aware of complications. I'm attaching a photo from my breast at 22/27 rads. It doesn't look as bad in the photo as it was and it got worse... My RO commented on the swelling, which IS normal, but what she didn't realize was that it was swelling from an undiagnosed seroma. I had noticed a small spot next to the lumpectomy incision, with a tiny scab in it. She noticed it, too, but it just looked like a small nick or "divot" shape that was healing next the the scar. Now, I realize it probably was a nick from the surgery. Last weekend, as my skin was sloughing off, a fish-scale looking piece of skin fell off the spot. When it did, clear yellow liquid started oozing out like crazy. Needless to say, I was in the doctor's office the next day. RO sent me to surgeon. His resident poked the tiny hole with the end of a swab and there was a gush of fluid all over me. Long story short, I started rads with a big seroma. Basically, ALL of the area underneath the nipple, plus more, was an empty, unhealed space full of fluids. It's now packed with gauze and silver gel. Tomorrow, I start hyperbaric treatments to speed up healing. 20-40 treatments, each 2+ hours, plus 2 hours rt travel.

quiggie: If you're still sore, have them do an ultrasound to see if the seroma is back. I had unusual soreness the first week of rads. The nurse just kept telling me it couldn't be from rads. It wasn't, she was right. But she or the RO should have looked harder to figure out what it was.

MagicalBean

Coyote, thank you so much for your heartfelt post. You put in words what I have been thinking for the past month or so. Don't think you'll ever know what a comfort your words are to so many of us. Thank you.

meanmomto3

This will be my new outfit for the next month or two. Scrubs and a space helmet, seated inside a pressure chamber with 5 strangers for 2 hours each day. Needless to say, the photo is a model. I haven't looked that perky in... well... I honestly don't remember ever looking that perky!

The important thing for all rads patients to know is that the hyperbaric doc told me that if I ever need surgery on that breast -- for anything -- it is a good idea to have 10 hyperbaric treatments beforehand. Our skin is forever damaged and healing is forever impeded.

The hyperbaric doc said he sees a lot of patients who have "past radiation" issues. Not a fun Google topic.

I have to say ladies, knowing what I know now, I would have definitely chosen mastectomy. Not a lot of good it does me now, but if I ever have problems with the right breast, it'll be a different scenario.

Sorry to be so Debbie Downer. I'm just being real. For those who are so inclined, I would welcome your prayers. I am really having a hard time getting over my anger and disappointment with this new development. I had "rung the bell" and put my handprint on the wall. I had made it through and had big plans for the next months. I was generally very upbeat, even through the pain of rads. I need to get my positive focus and humor back. I don't enjoy being grouchy. On an intellectual level, I know this, too, shall pass. I just haven't gotten there emotionally/spiritually.

Thanks for listening!

CoyoteNV

Thank you.

ladyb1234

CoyoteNV, THANK YOU, THANK You for the post and words of wisdom. I truly love what you wrote and at times feel "guilty" that I know I will never be back to the per BC "normal" and that cancer will forever be a thought. Maybe not always in the forefront but a thought because this experience has totally changed me forever, but I can say for the better. I would always talk about living intentionally and on purpose before BC, but after BC I really have refined my definition of what living intentionally and on purpose means to me by re-prioritizin what is important in life. I too love the idea of leaving a dinosaur footprint. Again, thank you for speaking from the heart and sharing your words of wisdom.

Thanks all for the response and input on the # of treatments. Got the answer from my RO. She is recommending 25 rads as she will increase the dosage to ensure that 25 = 28. I confirmed that I was fine with the shorter schedule. She also stated the boosts are not needed because I did not have surgery on my breast. She also wanted to ensure I stopped taking vit D, glucosamine and L-glutamine until after radiation as it is not clear how these interact with radiation. Anyone else get this recommendation to stop these supplements?

Next steps, creams, soap, soft bras -- anything else? I already use aquafor.

Bippy625

coyote, I reflected on your wisdom all day. It expresses perfectly what I have been feeling. I totally agree. I am going to print it out and keep it on my fridge, to remind me I am not alone! Thank you friend for being here and for sharing that.

Meanmom, ouch. Looks so painful, are you okay? Poor thing! I am so sorry for your complication. You bet my prayers are with you. You are NOT debbie downer. Heal well and fast. Your humor is well intact, you are still funny. And dat beotch in the pic is waaaayyyyy too perky

CoyoteNV

MeanMom... I'm pleased to see your avatar here again.  I'm so sorry about what you are going through. It certainly seems that there are more pit holes (no pun intended) about all of this BC stuff that any one person (read that as doctors included) realizes.  Perhaps that is one of the negatives of the specialization of medicine.  We are definitely our own best advocate and the concept of vigilance is important on many levels.  Thank you so very much for the very explicit warnings and explanation about the seroma.  I definitely did not know that there is a healing risk after radiation.  It makes sense.  It shocks me every time something major like this pops up.... but we just don't know what all we don't know.  I guess a bit of google time is in my future.

I send you prayers, hugs, and wishes for a speedy and complete recovery. 

Thanks so much for your enlightening post.

WndrWoman

meanmomto3 I am overwhelmed by your new challenge and will be thinking of you often. Thank you for sharing your story and warning. Hope the other 5 people share your spirit and sense of humor.

Ladyb1234 I continue to take vitamin D with approval. My instructions say no vitamin C, E or betacarotene during treatment.

WndrWoman

Here is one article re hyperbaric treatment

http://www.uclahealth.org/body.cfm?id=502&action=d...

PoppyK

MeanMom, Oh my! I would be angry, too. Just when you think treatment is over, you hit his bump. Thank you for sharing with us and educating us. I will be praying for you. BTW, perky is waaaay over rated! I'm a fun, happy person, but no one would ever describe me as perky!

Ladyb, My MO told me not to take any supplements, so I haven't been doing so.

JeniferE

Prayers for you, MeanMom, that you would not lose hope and ultimately recover fully. Thanks for sharing with all of us.

My RO said nothing about stopping certain supplements. Definitely a question I will ask at my SIM appointment next Monday. Thank you, all!

Carynbrit

Coyote.. Thank you. I'm done with rads but just keep popping in to read what you guys are going through/been through. What you wrote was spot on.

Update on myself.. 4 days after rads.. my stupid incision opened up under the pressure of the sermona under there... deflating boob= not as much room. Was a few days before I got in to the see the nurse,, mainly for her to take a culture of it.. just in case. (fingers crossed because its just an annoyance rather than 'nasty') wandering around with sanitary pads in my bra.. first few days it was a sore as all get up.. raw tender skin thats now damp. (**$*#%$%)

and DANG.. I went back to read what you wrote Meanmom!!! My seroma was in place before rads. .in fact it had started up after the second surgery.. leaked about a week before rads..then settled down.. .I was actually surprised it hadnt 'blown' during it. but apparently the swelling was making space for it... As for the fluid.. yellow.. that was what I had this time (first time was clear).. My breast looks pretty much like yours in the picture there.. divots and all..from the side it looks horrible to me.. a huge dent of 'space' in there..its like a huge bit missing esp after the leaking.

mqt64

meanmom, you are not a downer! Information is power.Good thoughts and prayers are sent your way.

Only supplements I was told to avoid are C and E.

Beachbum1023

Vitamin D, I was taking 1000 mg per day, and now they doubled it to 2000 mg per day. But the Neurologist doubled it. So that is a question for rads tomorrow.

Tomorrow is rads #5, and I wondered if anyone felt sunburned so early in treatment? My chest feels hot to the touch, the incision from surgery is turning red, and my shoulder movement feels tight. My armpit is sore also. Maybe freaking out a little on my part? The nurse said nothing happens until week 3. Uh huh, so not sure where to go at this point, they seemed to not give a hoot.

JustJean

Beachbum,

What you are experiencing is common.

I started feeling the heat and felt weird in my armpit on day 2. They told me that was not true. Huh?

Keep moving. I went to a PT to get exercises to do and although it hurts right now to do them, I try to do them all every day.

Coyote, you are one amazing lady. Thanks for your post.

Beachbum1023

JustJean, at least I am not crazy. Tomorrow is #5, and I feel sunburned, and my armpit is sore, just like I told them. But that never happens until 3 to 4 weeks in. So they say.....can't wait until week 3 and 4. Should be good times. Frustrating for sure.

Sjacobs146

CoyoteNV, you wrote exactly what I'm feeling. I am 48 years old and until my DX I felt that there was no reason why I shouldn't live to my 90s. Now I wonder if I will make 60. Definitely changes you perspective. On a positive note, given all the love and support that I have received from friends, acquaintances and strangers, I feel that I need to pay it forward. If there is anything I can do to support someone else I know with a serious illness, I will. Perhaps that is the silver lining in all this

meanmomto3

BeachBum: I, too, had redness and soreness early on. It wasn't the rads -- it was the cream I had been given to use! It contained citrus and floral essences that apparently I was sensitive to. I ended up dealing with sensitivities I didn't know I had. Tape and the adhesive on the sticky spots, until they started using paper tape. Ask about changing your cream. I was sensitive to all of the crewms made by Medline. Miaderm is a good one for the first part. Also, ask about gels or lotions that contain lidocaine. Lidocaine can become your best friend!