Winter rads 2014-2015

Cath57

CoyoteNV my RO prescribed this cream to help with itching . She just started prescribing it to rad patients & they said it has been helpful...Mometesone Furoate Cream USP, 0.1% .

gemmafromlondon

Beachbum - you are surely a good cash cow! How in heaven's name do women in the US cope if they don't have loads of insurance or loads of money?

Being in the UK I don't have to consider the cost of any treatment but don't get much say in what happens let alone any fancy Oncotype tests. No question of elective mastectomies/reconstruction etc but that may have been due to my diagnosis/prognosis as I am sure they are done here , although it is known that American + Canadian? women are much more likely to opt for bmx. Apart from the technicians who do the US/CT/mastectomy/biopsy etc. I have seen one surgeon one oncology radiologist and two docs. Seems US medicine is jobs for the boys….. BUT your survival rate is better than ours. Any comments?

yikes1

Thank you for congrats and comments on me finishing radiation tx.

KKay5525 - now you know where my name yikes1 came from!

That is all I can say at times -- yikes !!

But, the reason I was not jumping up and down and celebrating the finishing of my rads is because I think I felt like I was/had been in a safe cocoon, and when I was "mature" and ready to leave the nest, it meant I will now need to really face the tamoxifen decision and road. Not one I want to face.

It means switching many other medicines, which I had started to do, and has not been going very well.

And then yesterday I read on a professional web site I look at about a woman, slightly younger than me, that lost her battle with breast cancer after a 14 year fight.

I do not know this person, but read some information about her. It just made me so mad that yet another life is gone due to this stupid disease.

But, I think the last straw (although I have thought that before), with all the research I have done, was the disposable bra existence. I did not know about this but know it could have helped me along the way.

thank you meanmomto3 for posting this picture. It was very helpful.

Maybe others have been offered this or knew about it, but I have not.

Maybe my doctors were not aware of its existence.

I would think that with all of the surgeries I have had, with all of the pain and swelling, and then dealing with lotions during radiation that this type of product would have been so helpful. It should have been part of the breast cancer 101 class. Oh yeah, there was no breast cancer 101 class, but there should have been!

Cath57

yikes1 haha! Breast cancer 101 ... So true . I have learned so many things " after the fact" argh!!!

yikes1

Cath57,

at this very moment there is a commercial on tv about a pressure cooker. that is what if feel like. Like I have been in a pressure cooker, and it just finished, and I just got out.

this bra thing has really gotten me all stirred up. If there was one thing that could have made this daily journey easier than I want everyone to know this.

Why do we keep needing to re-invent the wheel?

I just cannot believe I never, never, ever read anything about this until meanmomto3 posted about it.

Something that could have possibly helped with the post-op pain, swelling after each biopsy, each surgery. that could have made applying all the lotions and creams and gels during radiation (and still now, post radiation) so much easier?

And, guess what. I looked it up and IT MAY BE COVERED BY INSURANCE.

I know what my first phone call tomorrow will be about!

quiggy

Meanmom, THANKS for the surgery bra info.  Never heard of it!  Would have loved having it sooner; what the heck is up with doctors not discussing with every BC patient!!!

I'm checking with insurance to see if they cover.  Could use for rad treatments that r just starting.

Thanks again.  I posted on my cancer pinterest board to spread the word.

PoppyK

I hadn't seen the disposable bra before either. Thanks Meanmom. I have learned so much from the people here.

Yikes, I hear you. Something that would have made such a huge difference in my daily life... and I didn't even know it existed.

My insurance company has a "cancer specialist".... as I found out during one of our many calls. Either my DH or I ask to talk to them when we call in. They are able to answer all of our coverage questions when we call in. They cover a certain number of bras a year and $500 a year for wigs and wig care products. We have fantastic insurance that we have paid through the nose for over the years.

PoppyK

LARock, Welcome to the thread!

The one thing that has been most helpful for me as I started rads was in a post by Coyote. She reminded us that many people do not have bad skin reactions to rads. They don't post as often as those who need support or suggestions.

That hasn't stopped me from being prepared for them with every bra, t-shirt, camisole, lotion or potion that I think I might need! :-)

Gongshow16

Hi ladies- Although I am thankfully finished with RADS!!! YAY  I thought I would share this little tidbit for what it's worth.  I had mild SE's compared to some but did have some rash, redness, swelling, drying etc.  Used Aloe and Glaxal cream BUT I forgot to mention that I also used an old trick I used for my kids when they were babies.  They both had very sensitive skin and suffered from terrible diaper rash so I used to dry it (VERY CAREFULLY) with a hair dryer after washing it and before putting any creams etc. on it.  So I though this may help me after bathing/showering etc. and it seemed to...use a low setting and move the dryer around - it only takes a minute or so.  I still do it now and I'm a week out but it seems to be helping my skin heal up quickly.  Now, again, I didn't have severe skin issues but this may help some of you out there!

Those who have posted your art - so lovely!  Keep doing what you love!

Those with shit husbands - I really feel for you but you are so strong to be getting through this that getting out of a shit marriage will be a walk in the park! (I know it's not really, but seriously, if you can get through BC you can do whatever you put your mind to! and I send positive energy your way!) Join every support group that you can - get as many people on your side as possible and be your own best advocate!

 I am so very thankful for the marriage I have and the family and friends that have supported me.  I don't take it for granted ever! 

 We all deserve the very best life has to offer - don't ever doubt that for a minute ladies!! xox

 

Carynbrit

davida58 Ugh.. I'm sorry about the migraines.. I 'only' have about 2-3 year of them a year.. the put on the floor/throw up type and that is more than enough. The surgoen/oncologist where I first went is who I will be talking to about these.. but as I asked him in the early days about this kind of stuff..he said that if he didn't believe in the good it all does..then he's in the wrong job. I said 'drunk the cool aid huh' and he said..well yes.. so my list and I.. well my BINDER and I. (. i've done probably overkill research on the Tamoxifen..) may or not make a difference..because 'its just what they do' and have done for what? 30-40 years now? I'm thinking of getting a second opinion down here for a start plus a oncologist that is closer too (the others an hour and half away). My biggest concern is ,any side effects being dismissed as anything at all but Tamoxifen.

I scheduled myself a full on physical and work up before I start. with .my regular dr who has all my history , healthy lifestryle and reluccant visits for the flu shot and the pap smear once a year..,no meds..never been on meds..and NO problems,,along with no issues with anyone in the family!)..i feel like i need an honest 'start' marker.. you know?

gemmafromlondon Tell me about it! I'm a transplant from the uk..been in the states 14 years now (im 43)..im always horrified..but aware of overkill..and oh hey take a pill for this..and heres an rx for this). Cancer though..oh boy..its the biggest money maker in the industry.. I have insurance..but before i even hit the 1st surgery..i'd hit my catastrophic limit ( 6k) with the biopsy..testing..more testing..oh yeh another mammogram..then the pre op consult and everything else//morning of surgery was the wire localization..then.. yes another bloody mammogram... So bills in all their glory started plopping through the door (like its not stressful enough). Ii remember argueing with the 'must have a pregnancy test' ..pee in a cup..on the morning of surgery? 1/ I was on my period..ffs....because it was going to come up on the freaking bill. Rads so far this year (im so lucky..i overlapped the years..gag).. and here we go again.. 6 k in out of pocket costs.. I thought i'd be able to afford to eat healhy! ha. On the good side (if you can call it that)..most places accept interest free payemnts..but yes..i am a cash cow too

Meanmom.. and others! lol i looked at that bra..and was a bit peed off!!!! I wouldnt of cared if someone had given me a bag full of afverts/things you can buy. or 'this may be useful'. that bra would of made life SO much easier at certain times..heck even now during rads..esp with the air flow thing.. or during leaking sermona. for instance.

Lack of info was a problem.. the hosp 'forgot' to give me the what to do after surgery/what to expect thing though.. oopos..they said.. i wont tell you what i said. Luckily one of my neighbors called the local hosp (the one i wasnt in) and went and got that for me from the BC advocate.

I'm off to not scrach my itchy skin now.

yikes1

yup -- you get it.

if there is something out there that can make this journey one tiny bit easier, why not?

obviously, i am not the only one that could have used this bra thing.

so, yes, let's spread the word so that anyone in the future can be helped by what we have just been through.

Quiggy - I am going to try to find this board.

Reader425

Hello ladies, one week down five more to go. Doing pretty well -- slathering on the calendula and aquafor. I read more than post, but really appreciate the support!

Here's to a great week for us all

Saltygirl

well today is the day. Number 1 of 28. I'm nervous but happy to have made the decision to do it and I have you ladies to thank for that. All of your stories and kind encouraging words are what I needed to put my fear aside and put my health first. Thank you all

WndrWoman

yikes1, I totally agree about why all these centers don't compile all this helpful info. They seem to wait until you ask. I did get the tube top for post surgery and an instruction sheet for creams, etc. For radiation but little help for bras. I have bought a few and it never occurred to me they could be covered by insurance. They tell you seamless and turn tops and nighties inside out but then say bra over tshirts or camis and that makes creases.

SandyLovesLucy

Saltygirl, good luck today.  I've only got 2 of 30 left.  The weeks really have gone by quickly and I've done well.  I hope the same for you and all others who are just starting!

I have a slight rash on my chest and use hydrocortisone cream for that.  I also have discoloration under my arm that is feeling a little more sore but nothing I even feel the need to take pain medicine for. My doc gave me Natural Care Gel and that, along with corn starch, has worked well. I still don't have my pre-chemo energy but am not as fatigued as I feared I might be at this point.  I'm a little concerned about getting back into a full work schedule.  I'm a sales rep and have to do a lot of driving and lift sample cases.  I've had some tightness and fullness in my shoulder/upper arm and am doing stretching exercises but have been advised to stay mindful of the risk of lymphedema.  So that will mean making my sample cases lighter and carrying a MUCH lighter handbag. My doc also gave me a prescription for a lymphedema sleeve to wear when I travel by plane.  I was looking at a book in the MO waiting room and have purchased it.  It is The Breast Cancer Survivor's Fitness Plan by Dr. Carolyn Kaelin.  She is a BC surgeon and also a survivor.  It contains good information about general wellness and exercises for stretching and strength training.  Not a new book but I find it very helpful.

The BCO discussion boards have definitely been my BC 101 course!  Thanks to all who share here!

Hugs, Sandy

CoyoteNV

I guess it was on the July Chemo board that I said that insurance paid for my mastectomy bras and will continue to pay for at least 2 specialty bras every year forever if I wish to buy them.  You have to have a prescription and go to a specialty store (frequently near surgical hospitals) or as we now know, buy them online. Those stores generally sell the breast prosthesis also.  The post-surgery bras that I bought are different than these, but the open in the front and are rather unstructured. They have removable pockets to deal with the drain apparatus and permanent pockets to hold the prosthesis if you use them.  I wore mine during the early rads time, before I found the Kathy Ireland ones ($8.00 for 2) which insurance did not pay for.

My Mom had a mastectomy in the 1970's and she wore a prosthesis for the rest of her life.  Insurance paid for her bras also.  My prescription was provided by my original surgeon.  I really don't know if my RO is aware of bras that are made for radiation patients.  If no one has told them about them, how would they know? We can help other women.  I suggest we make a copy of the web page and take it to our RO at our next appointment.  I'll bet he/she could write a prescription.  I took for granted that everyone had post surgery specialty bras. 

Thanks Cath - I start my post treatment appointments this week.  I'll mention the cream. 

Gongshow16

Hi ladies

I'm glad to hear that many of you are getting closer to the end of rads!  Saltygirl:  good for you!  It will be over before you know it :-)

I have a question about false eyelashes - does anyone use them? What brands etc.  I have never used them and don't know where to start! I'm heading back to work on Wednesday and am starting to think about actually having to put more effort into my appearance.  I really miss my eyelashes...I can draw on pretty good eyebrows (I went to visit my class and everyone thought they were real!)  but the no eyelash thing bothers me  ...

any advice would be greatly appreciated.

WndrWoman

Hope it goes easier than you expect Saltygirl

dacre

Welcome Monday...back to work!!!!  And my supervisor, of course, scheduled a meeting with me tomorrow at 10:00

 "I would like to
meet with you regarding some work concerns and set expectations moving forward
tomorrow at 10 a.m."

Of course, tomorrow at 10:00 am is my appt with the radiologist!!!!   It is on my calendar and I put it in writing to her last week per her request!!! Can I just scream now?????

PoppyK

That stinks dacre! You need an advocate, maybe union or HR, to set this woman straight. Maybe her boss? No one should have to deal with this harassment on top of treatment.

dacre

Thanks PoppyK....I have a call in to the Union and also to my Oncologist.  I'd like her to take me back out of work until I'm finished treatment.  I simply don't know what else to do. 

CAS4

am I the only one that freezes up on here? Geez! As I was saying...

So I was advised to lightly use a clariosinic (if I had it) once the area healed to try and keep the skin from not being

So tough after. Who knows. I'm not really worried about it, it's all a part of the journey. YALL can all do this!!! You are all warriors!!! We are all cheering you on to that bell, it will be here before you know it!!!!

CAS4

Gongshow my lashes and brows came in all together two weeks after my last radiation- in about a week- it was nuts!! I have friends that swear by the lashes at the MAC store. I drew on eyebrows with a powder- Lorac makes a brow set- and then used an eyeliner on top and smudged on bottom to make it look like I had lashes.

I will say I've switched almost all the cosmetics I use (which isn't a ton) to organic brands-, who knows but if it helps me avoid some of this journey again then great, although I've actually enjoyed all of this, gotten to know myself much better than ever before. My eyes and surrounding area were very sensitive starting with chemo forward. I know there are some great youtube videos on how to chose and apply lashes specifically for gals like u

Nomatterwhat

Coyote, my insurance also pays for 3 mastectomy bras a year as well as a set of prostheses per year.  But, you ladies have lost me talking about rads bras.  I'm sorry, I don't understand what a rads bra is.  I wore my regular mastectomy bra with a shirt underneath it.  Now when I use my cream, my techs tell me to put a soft cloth over my radiated area and then put on my bra. 

Dacre, It is time to bring in the union AND the HR department.  Enough is enough!!!!!! 

Saltygirl, it will be over before you know it.  I am so used to going everyday it is so strange to be sitting here at home on my lunch hour.

Gongshow16

CAS4 - thanks for the tips! I can't believe your lashes/brows came back so quick! I went online and found loads of helpful videos.  I actually went and tried some of the steps I found...omg - I need some practice that's for sure!  I looked like a clown ...ha ha.  I don't wear a lot of make-up normally either. I  usually stick to pureminerals brand.  I am going to try the false lashes later this week.  I find my eyes still get watery from time to time so I am kind of worried that they will fall out during a lesson - that would grab the kids attention! 

 

dacre

To Nomatterwhat:  HR knows what's going on and says it's a "personality issue" - hers not mine.  The Union will be with me tomorrow when I meet with her.  If I don't like what's happening the meeting will end and  I will go directly to HR.  It's simply ridiculous and I cannot even believe I'm dealing with this nonsense. 

CAS4

😂😂I hear you! well if the point is to get their attention?? I've worn more makeup during Breast cancer than before- I've worn all these crazy wigs every week of chemo and for rads- just to make others smile- I went bald to a rad and NO ONE including my oncologists recognized me- this wig has matching boots even!

I texted a girl I know thru MDA and she said she did a darker like taupe/light brown eye shadow with brown liner on top of that while she was waiting for lashes to grow back. My eyes still get watery too, I tried a waterproof mascara and almost scrubbed my eyeballs out trying to get it off- there quite more effective than they used to be clearly-Bliss makes the best waterproof eye makeup remover I've discovered...the harder way.

Gongshow16

 

CAS4 -Love the blue!! Those are killer boots!   You sure make the best of it - love your positive attitude :-)  I know about scrubbing the make-up off - it's a pain! 

 As an aside I have found a nice all natural facial scrub that brightens, tightens and exfoliates.  1  TBSP honey, 1-2 Tsp cinnamon and a squirt of lemon juice - mix and smear all over your face.  Leave on for 20-30 minutes and remove with warm water.  Don't scrub it off too roughly - just use your hands and get it wet and carefully rub it off. 

eileenpg

Dacre=I hate your Boss!!!!

WndrWoman

Can you hear all of us screaming too? Unbelievable! How can someone be so insensitive!