Fall 2013 Rads

LisaSp

McKatherine: Thank you for the info on fatigue. About two weeks out now and still tired at the end of the day but finally feeling more rested in the morning.

I didn't see any significant skin changes until I had my boosts. When I finished I had a large red oval where the boosts had been. Now I have a dark tan oval, which peeling some.

The scar from port removal still hurts some (had it out in October). It was not radiated and it irks me.

I started tamoxifen yesterday. My MO is planning on keeping me on it for ten years, if possible. I'm crossing my fingers for few SEs.

If anyone's started tam, seen any SEs yet?

70charger

Lisa, I've been on Tamoxifen for almost 2 weeks, no se's.

angelanature

Hi All,I had yeaterday off and 2 more "rest"days,my slin hasn't gotten any better,if anything it's worse,especially in the neck areas.I had a large metastasis to one of my lymph nodes(.9mm)and am getting all my surrounding lymph nodes zapped.It seems the skin that has been exposed to sun in the past,like my neck and chest,have burned the most.At 48,sunscreen wasn't even used when I was a child and teenager.How are our older ladies making it through?Has anyone not done the whole tx?I'm not sure I can do it,it's beyond painful.I would rather do a couple more chemos than expose myself to anymore burning.Angela

Rainyday2013

Lisasp...My MO said that the SE will take 2-3 weeks before they show up. If you get any...

Bounce

Angelanature - my RO said my skin would carry on deteriorating for 4 days after I finished rads and it did.  I did find that the weekend break gave me a respite at the beginning of rads but not so much towards the end after week 4 and 5.

I have been shocked to see what state the docs let some people get to with burnt skin - so please stand up for yourself and demand the best care/medicine/help they can give you.

I think that those people who suffer in silence suffer more.  Let your doc know loud and clear that you are not happy.

I can't imagine some doctors going through the torture they feel free to put us through!

 

Bounce

I am a little upset.  I met my new MO on Thursday (the hospital seems to move you down the chain of doctors) to have my post rads check up and to start Tamoxifen (again) and asked her if I could ask some questions.  Then I asked her what her opinion of iodine is (as there seems tobe a lot of controversy about it).  She responded in the most agressive and rude manner - without giving me any explanation for her negativity.

What a miserable excuse for a human being.

I don't want to be treated by this lady in the future if things should get worse.  She has no compassion for her patients which was clear to me during 1 of the 5 interruptions during our meeting.  Some other remarks she made showed that she doesn't have any compassion - she thought I could handle the side effects of Tamoxifen while still getting over severe radiation fatigue.  She told me lots of women do it!  Good for them I am very happy for them.  I am not Superwoman. I can't run my home, work and get over radiation and start Tamoxifen so am waiting another week.

She did agree though that I can do an ultrasound and an MRI next year instead of US and mammogram and seeing as I am terrified of doing a mammogram (which didn't show my cancer anyway last time) - should I just put up with her for a year as long as it is just for check ups and change MO's if I get sick again?

Should I send her a letter saying I think she was overly aggresive?  I think she would just chew it up and spit it out!

How do you ladies cope with awful doctors?

MsP - I remember you said you call them by the smallest form of their name - Robert becomes Bobbie -I love that and must remember to use it.

Hope the coming week is easy for everyone - especially for the ladies with ongoing skin issues.

kwing514

I started Tam 2 weeks ago no SE yet.

kwing514

I finished my, 16, treatments on Christmas Eve. What a wonderful gift that was. Now the next step is getting past the irritation, tenderness and dryness. My energy level is coming back very slowly. It's difficult to know how much is too much. I don't know until the next day when I wake up feeling as though my feet are not even connected to my body.....dragging.....

McKatherine

Lisa -I'm about six weeks into tamoxifen.  I thought the first few weeks it was adding to my fatigue, but it may have just been recovering from rads.  

I've had mild skin issues - pimply rash on my face, shoulders, chest.   Not sure if its the tamoxifen or not.   Developed ovarian cysts - one ruptured last weekend so I spent the day in the ER.   NP at my MOs office says that's probably from the tamoxifen.   Hoping to find out tomorrow if they want me to keep taking it, and whether we can do chemical ovarian suppression to stop the cysts.  Woohoo.  

Otherwise, no SE from the tamoxifen.  

FierceBluebird

Hello Radiant ones!

Angela, let them know how painful it is and tell them you need a break. My skin completely broke down and it was agony. For a long time I tried to keep up the brave front and just muster through, but did myself a disservice but trying to continue. I later found out that there is no reason why you can't have up to a week break. By then I needed a three week break for the skin to cover with scar tissue before I could finish my boosts.

I will have been done with rads three weeks on New Year's Day. I am still so dang tired. I sleep late (anywhere from 10-noontime) then sleep again at 3 pm, and go to bed at 10 pm! It is a ridiculous amount of sleep. I hope my fatigue gets better soon. 

My new worry is how dark my skin is. I am deep dark tan from the midline over. It is very noticeable. I hate high collared shirts or sweaters.  Does this skin ever get back to normal color or blend with the non-radiated side? Are there any products that help lighten the skin that anyone has used with good success?

Word of the day:

 lichtstrahl - "ray of light"

Rainyday2013

Hi Bounce...I would not go back and deal with that MO. I would request someone else and tell them exactly why. After all we have been through, we deserve nothing less than compassion and understanding. Go get 'em!!! I ran into a rude radiation technician and I took care of it. It never happened again. I feel we deserve to be treated with kindness. Period. You start taking tamoxifen when you are ready. I will start taking anastrozole and I am dreading it. I have also been waiting for this fatigue to go away. It is getting better.
Take care of yourself!

percy4

Hi all - I just had a lumpectomy for 4 mm of low-grade, non-necrotic DCIS.  In spite of that low-grade disease, they found a micro-invasion.  Still a great prognosis.  Had been looking at doing no rads, but now with the micro, and because my margins on 2 sides were 2 mm (great for having gotten out the disease, not good enough to forego rads) I will be doing the rads (3 weeks, 4th week boost optional.  RO says the boost only adds a tiny bit of a better help; any ideas about the boost out there?).  The lumpectomy in my tiny breast was done really well.  Still, it was already the smaller breast, and is marginally even smaller, now.  How many have had shrinkage of the breast, either at the time of rads, or much later?  Anything to prevent that?  Am also scared about tripling my lung cancer risk, as a former light smoker.  Still, again, RO says that my chances of lung cancer now are 4 in 1000, after rads, 12 in 1000.  Seems worth it.  Just want to be done with this, but also want to know what to expect with rads.

percy4

So, bottom line; I am really unhappy about rads.  But, looking at this forum, I get that I have to fight this cancer, at this time, and not something I worry about in the future.  Still; I am a planner, and it would help me to know what's coming, and whether the boost, in my case, with such a small amount of disease, is really important.  They are leaving it up to me.  Not so happy about that, as even though I had a micro-invasion, they are not recommending a sentinal node biopsy.  From what I can see here, that is almost unheard of.  Guess my HMO feels my 5-10% chance of nodal involvement is unimportant (how can they decide?).  So if I have the SNB, and RO wants 6 wks out from there before rads, I would be going 12 weeks from lumpectomy to rads.  How do women who do not advocate for themselves do this?  It's like a full-time job.

Shalimar630

Good Monday All. 

I just had my last whole breast rad today and will start boosts tomorrow. I got through relatively well with just some redness and swelling. But now I'm a bit more concerned reading that some of you seemed to have some reaction from the boosts also. I suppose I was thinking it wouldn't be as severe after the getting the whole breast done. Guess it's just different area, different response. I will find out...

I will also be on something afterwards, not sure which med. I was thinking tamoxifen was for premenopausal people and something else (was it anastrozole?) for postmenopausal. Am I correct? Are there other meds offered?

I am feeling some fatigue also off and on, I also hope it doesn't last for very long after treatments end.

Bounce, I would definitely change MO's. There is no reason for you to put up with a miserable person during this stressful time. I hope you find a very compassionate MO to get you through this.

MsPharoah

Hi Shalimar, how are you doing, hon??  Everyone is different and if you have made it through whole breast radiation with some redness and swelling, you should not necessarily expect your boosts to be horrible.  When I had my boosts, the skin on the rest of breast started healing so while I had a portion of the skin still getting zapped, the rest of the skin was doing nicely and that provided a lot of relief.  For me (and I say for me), the boosts only made that area a little redder.   I don't swear by any particular lotion....they are all about the same as long as they are pure and don't have a lot of added chemicals.  What I do swear by is drinking a lot of water when doing rads and exercising every day.  Also a comfortable, soft bra!!!   I worked every day, but I didn't have children to care for or any other obligations that kept me from jumping into my pj's early every evening.  My husband (retired)  did all the shopping, meal preparation and other household duties. I was able to do the laundry and some other light household duties, but luckily my husband took care of it really.    If you have obligations to work and care for children or parents or a household, then you will definitely have to let something give...just not possible to maintain the same schedule during treatment.

And I was told that recovery will take as long as the total lenghth of your active treatment...surgery, chemo, rads...if that took 6 months....figure 6 months to recover.

There are 3 anti-hormonals for post-men women.  Femara, Aromasin, Arimidex and their generic equivalents.  They all do about the same thing and you will want to ask your MO the reason they selected your drug.  After about 60 days on Femara, I had horrible and scary joint pains.  Was better with exercise and ibuprofen and after about a month, I am not having those problems and haven't needed any pain meds.  It takes time to get used to the medication...so don't give up as these drugs are your newest BFF.     I am very stiff when I get up in the morning or when I stand after sitting or get out of the car.  All normal side effects and goes away after a few steps.  These drugs will definitely turn you into an old lady...if you aren't one already.  LOL 

Good luck, you're almost there!

Love, MsP

LisaSp

Hello everyone! Woo, I am tired. I am now 18 days post rads and find that I need a nap in the late morning and to lie down for a while at about 5. So a 7 to 11 schedule is ok most days as long as naps are involved.

I'm on my third day of tamoxifen so we shall see what pops up in two weeks. My MO seems to feel the most common SE are hot flashes. My hot flashes seem to have stopped for the past few days so that's interesting.

What is happening now with my skin is that the very dark boost area is slowly peeling.

Bounce I agree with everyone, find another MO that can be more respectful. And percy, yes, I think more breast shrinkage is possible after rads. Hoprfully though you will be fine re. side effects; several of us have not had too many issues. Bluebird and MsP, glad to hear from you both! Maybe Bluebird all that dark tan will eventually peel away (if we're both lucky).

candi07

Bounce, I too agree with everyone...you don't deserve to be treated that way.

sloyd66

ok KR13 thanks

sloyd66

Hello Everyone! Hope you all had a wonderful holiday and upcoming holiday. Well today was day 6 of rads, so far so good. My dr looked at my boobs said it looks good getting a little darker, but I don't see the color change.. I told him that he said it's there, I said well I don't really look at them like that, maybe it's good I don't notice it. I haven't had any real fatigue, I been going going going since day one of Rads because I have company for the holiday, but plan to rest up good come Wed thru Sunday as I'm back to work on Monday. I showed the drs about that Eucerin cream that has aluminum in it, they were shock because they didn't know, I'm thinking y'all don't look before ordering this to women. So I just told them make sure y'all take that off your list.

angelanature

Hi all,thanks for all the posts empathizing with me.I'm shocked and dismayed so many of us are really suffering from serious skin issues.What happened to "rads are a walk in the park"?Bouce,I rarely share posts with my hubby but yours I did,he was very impressed,he said you expressed what he was feeling about all this perfectly.It takes someone going through it though for me to listen so thank you.They started the boost yesterday to continue to give my whole breast a rest,my idea not theirs.I need 5 then I'll see about finishing the last 8.Last night I soaked the bed from oozing this clear fluid from under my breasts and between then were it's raw.It's so disgusting hopefully I'll mange through the boosts and heal everywhere else.Bounce,run from that doctor!Hugs Angela

hobbesla4

Angela, so sorry that you are having skin issues also.  I have been for about 2 weeks now.  Despite following the skin care regimen my RO has given me, things are not changing very much at all.  My skin is peeling in huge sheets and is raw in the boost area and under my arm.  My whole breast is a purple reddish color.  My RO saw me today and told me that this peeling can be a normal part of rads and that it should improve by the time I see her for follow up in about one month (I have two more boosts and should be done with rads on Friday.).  We talked in detail again today regarding what to change or do differently to help my skin heal.

Hope your skin can start to heal.  Talk to your RO or the nurses if it continues to get worse.

FierceBluebird

Angela, it sounds like moist desquamation has set it. I found it to be the most excruciating painful part of the process. Even my open wounds didn't hurt as much. The area under the breast caused me the most pain. Be sure to avoid skin to skin contact. (Breast fold) Vaseline impregnated gauze helped a bit, but nothing touched that pain for me. Couldn't sleep and soaked the sheets too . I also used domeboro soaks to help dry the area.

But it will get better! Switching off to do boosts is a good idea and don't hesitate to ask for a radiation vacation if you need it. I did a lot of research on skin breakdown, and it is no longer recommended to just push through. It makes no difference in treatment outcome.

Hobbes, the peeling skin is actually a good thing they say as long as it's not moist. And domeboro soaks may help you also. 

2% lidocaine such as in burn gel or itch/pain relief gels can be temporarily helpful.

Sending gentle hugs!

Bounce

I am thinking of all you ladies with skin problems and wishing you all comfort and healing.  I am more than beginning to dislike the medical profession and am coming to understand why some people turn their backs on medicine and choose alternative paths.  Not saying they are right - just saying I understand them when I didn't always in the past.

My rads fatigue started by at least the second week and continued long after I had finished.

I am relieved to say that 3 weeks after and I am finally starting to feel better and to cope with life.

Today a few things happened (small unimportant things) and I caught myself thinking "O.  I didn't start crying"  like I would have been doing when I was so wiped out.

Its great.  My breast still refuses to be cooped up all day in a bra but I can live with that.  And my nipple which was so pale after all the skin peeled off is getting a little bit of color back so I am hopeful it will look OK one day (MsP - I remember what you said about that.).

So LisaSp and others with fatigue issues - just rest as much as you can, good nutrition and things do get better.  And like MsP says drinking is important too.

I have to say I am glad to see the end of 2013.

Here's hoping 2014 is kinder and healthier for all of us and all of our families.

Shalimar630

MsP: Thanks so much for all the info. I will keep all that in mind when I start the meds. I certainly agree with the soft bra necessity. I am lucky that I can work from home and am usually wearing just a camisole, but also have a couple of the coobie bras. Really trying to watch the breast fold and coverage on the nipple. 

We have my daughter and two grandkids living with us, it is a bit more of a challenge with the fatigue setting in, and they also shared their colds, so now I have that to add. 

sloyd66: I didn't know about the aluminum in the Eucerin, but in the Eucerin lotion I picked up I noticed five different kinds of parabens (for those of us watching out for that). 

Wishing fast healing to all with skin discomforts!

Bounce, I'm with you on 2013, let's just delete this one.

Happy and Healthy 2014 to all!

MsPharoah

To all the Radiant Ladies and Ladies in Waiting.....

I wish you the maximum love, joy and good health for 2014. 

I am an optimistic person.  I believe that people are good, decent and kind.  I like my children more every day; I want to be like them when I grow up.  I think each year is the best darn year ever.  I cherish my long and happy marriage.

But.....2013 is getting the big middle finger from me!  Here;s to seeing this crap in the rear view mirror!

Happy New Year, friends.

Love, MsP

JanerT

Just finished rads, 33 in all, the last 6 boost.  My dr. prescribed an ointment when my blisters started to break and ooze, it is wonderful stuff and has really helped, I don't have it with me at this time but it is silver something made especially for burns. It made a difference within 24 hours and now after 3 days it is really helping. I was seeping on sheets and night clothes and bras and it was very painful. Still have some very sore spots but this ointment is great.  Ask for something.  My doctors are so great, after reading some of these posts I feel so lucky. My doctor had me take a break on a Friday about half way through to give me a three day weekend and he suggested the ointment.  Good luck.

hobbesla4

Jane,

I am glad that your skin is feeling better.  My doctor said that I can't use the silver ointments because I am allergic to the components it is made of.  For now, I am using neosporin in some areas, as well as Regenecare HA in addition to Baby Aquaphor ointment, as recommended.  My RO thinks my skin should feel better in about a week or so.

FierceBluebird

Ms. P you always make me laugh.

Happy healthy 2014 to all and to 2013, I am kicking it to the curb!

sloyd66

Happy New Years beautiful ladies! Wishing you ALL a healthier 2014! Have anyone have/had pain in the forearm on your surgery side? Its like if I stretch my arm out like to give you something it's pain, almost like a pulling. I mention it to my Rad dr but he didn't seem concern..

Sandymomto3

slyod66... Had a similar experience.  Currently working with a PT, for axillary cording.  There are some home exercises to help keep it loose, but it needed her help to get moving.  Is your arm swollen at all?