Winter rads 2014-2015

CoyoteNV-please mark me as completed.  I finished on Friday, and my skin stayed intact even thought the RO gave me an 80% chance it wouldn't.  Yay to all those who recently finished and good wishes for time to go by quickly for those who are still getting rads.  I started Tamoxifen today so onto the next journey. This group was so helpful in getting me mentally prepared for the rads journey.  Thank you to all of you!

Insurance... health care and access is seriously complex. I've tried to learn how other countries handle access to health care, compared to my USA. Universal or government supported care seems great but comes with its own bag of issues such as delay in non urgent care and taxes to find it. USA, well, if you're lucky and have "good" coverage, you likely pay well for it. Those in government aid get free or reduced care. I feel fortunate to have great coverage although I'm limited to the providers and care that my insurance will cover. I've received quick care for my bc, no waiting.

I care for an elderly aunt, she's on Medicaid. They do not cover dentures. I've researched to find help, no luck. Her case worker said it's common for elderly to just shift to soft foods that don't require teeth. REALLY!!!!

What's the answer?

In a perfect world, every human has access to good care, with or without money.

Happy for you Chrissie that rads went so well. Enjoy the extra time.

coyotenv, re insurance, I've only had my current policy (which is just for me since my husband is getting his coverage through Medicare now) since last Nov. 1. Just 2 months of 2014 coverage, during which I was dx with DCIS and set off on this journey. I renewed the policy (with a hefty premium increase just because, I guess) in January for 2015 coverage, knowing I would only be keeping it until June, when I turn 65 and will be enrolled in Medicare, too. I feel that the current premium, $527 a month, is pretty high, and the out-of-pocket is over $6,000, so I will have paid over $12,000 for my dx & treatments after for only 8 months of coverage come June. However, I can say that the insurance company has not dictated my treatments or doctors in any way. I chose where I wanted to go—one of the best medical institutions in the country that luckily is not too far from me— and it's been covered, subject to those deductibles and co-pays. And also, of course, the insurance co. has paid out way more than what I've paid in, so I'm still ahead of the game. And it could have been far worse, since my treatment will have been much less expensive than some because of not having chemo, no hormonal therapy, etc. I don't see how anyone could manage cancer treatment without insurance unless they are very wealthy. And that's one of the big problems with the whole system: our health care in this country is far more expensive than anywhere else in the world, but we don't seem to have better outcomes despite paying so much more. Something is definitely wrong there.

I'm still trying to figure out the whole Medicare thing as I look to getting myself enrolled so coverage starts on June 1, so I can ditch the private individual policy that's costing an arm and a leg (though at this point, they'll have to start covering everything 100% as long as I keep it). But anyway, I do know that my husband's coverage through Medicare is considerably less expensive than mine is, and his co-pays less too. His supplemental policy only costs, I think, $95/month. I know others who pay about $200 for a Medigap policy, and have no out-of-pocket expenses. So I don't think it's always the case that Medicare doesn't decrease one's insurance costs.

It's definitely true that insurance affects what kind of care you can get if you have bad insurance (or worse, no insurance). I had bad insurance for 3 years prior to Nov. 1 and it had a huge impact on my health care, or lack of health care. We had no choice then, because it was employer-provided insurance, but if you do have a choice, I think it's really critical to choose carefully. I didn't expect to have BC when I signed up for my insurance, obviously. But now I know to never assume anything.

Hi ladies. I am so glad for those of you done or near finished. I am due to start 6 weeks of treatment Monday. A sleep question from a sidea sleeper....... I am having rads on the left side and was wondering if any of you were able to sleep on the rads side. Love, Jean

I'm a leftie and can still sleep on my left side if I get situated just right.

A few thoughts on Medicare. Medicare covers many services at 80% of the fee. People use medigap/supplemental programs to cover the remaining 20%. I have Plan F supplemental coverage, which tends to be a more expensive premium but there are no copays. In my case, and I suspect all with Plan F as I understand they are required by law to be the same, the supplemental coverage only covers what Medicare deems "medically necessary". So I am pretty well covered for cancer treatment but Medicare would not over a consult with a nutritionist or with a genetic counselor so the supplemental won't either. Medicare HMO/PPO programs bundle usually prescriptions and have networks and copays. With medigap/supplemental you need a separate prescription program.

I may not be 100% accurate but indicate things to consider. AARP and local senior centers can help a lot for free. And your cancer treatment facility usually knows what companies provide policies with good coverage.

Jean, I am a right side sleeper and right side raddie.  About 3/4 of the way through I started putting aquaphor on that side, put a soft towel over the area and wrapped it with a wrap I had left over from surgery.  It helped cushion things while I slept and it kept my skin from blistering.  I usually got comfy any way I could at home and for work I put a piece of foam under my bra to keep it off my skin.  Needless to say, I was NOT a fashion statement during rads!!!  You will be fine, you're tough!!!!!!  Be thinking about you. 

ladies, I have not been here for over a week and can't believe how long it took me to catch up. I completed 15 of 30 on Friday. Thanks to all rhe advice received here, I have done well thus far. I am trying to drink the recommended 64 ounces of water each day but usually fall short, though consumption has increased considerably. The recommended calendula lotion is like a miracle cream! After week 1 I had some minor peeling around my nipple, but nothing since I started with the calendula. I slather aloe on right after treatment, then use calendula and aveeno after I shower and again in the am. I decided to add aveeno because I didn't know how moisturizing calendula alone would be. I have never used aveeno before but have found it to be a wonderful moisturizer.

With regard to insurance, I have been online keeping a close watch of everything as it bills. What insurance says is not covered has not automatically billed to me. For example, insurance said the MRI prior to surgery was covered, but the radiologist interpreting the test was not covered. Really?? They also covered the mamo the day of surgery but not the wire localization needed for surgery. My final bill for radiology was 175, much less than what was originally shown online. For rads, one week of billing including setup was originally $55000. I am very fortunate to have good insurance through my employer with an annual out of pocket at 2500.

Gemmafromlondon, what is your standard for screening? Are you entitled to a mamo and sono annually?

Coyotenv, thank you for keeping track of everyone's progress. I am thrilled as I see each member complete treatment. I am not one to post frequently but see familiar names - kayfry- I had my surgery on 1/6 but found this site later, recognized you from Jan surgery sisters!

Justjean, sleeping on rad side has not been an issue, though I have reverted to sleeping in the lovely bra they sent me home from surgery in. My skin has been ok, I have had some internal discomfort that sleeping in the bra seems to alleviate. Random shooting pains that come and go. My. View is, if this is all I have...

Thanks for the sleeping tips. I have been having a little difficulty even before starting rads due to the lymph node disection (levels 1-2) on February 19th. Drain was taken out March 3rd. The underarm is still numb in places and feels sunburnt too. Sorry for whining. It could have been a lot worse. Love, Jean

Well, I still can't get a solid night sleep because of discomfort on my bc surgery/rad side.  It's not a skin issue, but a deeper pain. My ribs became inflamed during radiation and I still feel it enough to wake up when I roll over onto my right side - which is how I used to get my best sleep.  It feels a lot like it used to feel at the end of the day when I wore a bra that was too tight in the band - only on a higher rib. It's been 3 months!

leslie58 .....good question on how long does fatigue last after treatment. Also...when does the fatigue begin....two weeks? 3?

Regarding out of pocket costs..... I have seen people use gofundme to help raise money to payfor costs. Just FYI.

Aveeno - I have been using this now that Silvadene has healed my peeling spaces. On my RO'S approved list is Aveeno skin relief intense moisture. Slops on easily and feels good.

Crazy insurance - yeah, my visit to doctor to have Mirena IUD removed - they covered the appointment but not the removal of the IUD.

Sleeping - I am a stomach sleeper so post surgery was worse. Developed a system of pillows to keep me on my back. Better during radiation when I went on my right side and used a pillow to prop my left/radiated breast. Also slept in Dale post surgical bra. One pillow was a short round bolster which I have used to keep my arm from my body.

Fatigue - Did not think I had much fatigue but realized afterwards that I had a lot more energy within 10 days of finishing. Oddly now 5 weeks out I have been sleeping longer, more than 8 hours. Not depressed. My husband thinks I am using so much more energy during the day that night is when I am recovering and healing. Still warmth in breast so inflammation there has not ended internally.

Leslie - Glad you are done so you can deal with your mother's situation without daily appointments. I am sure this extra stress is taking a toll on your body's ability to heal and recover. Try to get little cat naps if possible. Even sit with eyes shut and concentrate on your breathing for a few minutes. You know how on the plane they tell parents to put on their oxygen mask first and then help the child. I often thought of that caring for my mother last year when she died at 101. It reminded me to take little hunks of time even just to walk around the block to renew myself so I could have the strength to be a good caregiver. We are thinking of you.

I finished 9 of 19 today, so officially more than halfway there! I thought I was having no SEs so far, but actually about last Friday I did start to notice a little pinkness under my treated breast, where the band from a bra hits. I happened to see one of my ROs that day (they're sort of tag-teaming), and she said it was likely a tiny bit from the treatment, "at the bottom of the field." Since my DCIS was at 6 o'clock, that's probably where the boosts are going to go at the end, too, so I'm slightly concerned that I'm seeing anything this soon. RO also said it could be partly from the bra, to try a looser one or going to a looser hook. I just recently found some nice wireless bras that fit that I'd been wearing, but today I went back to the soft, stretchy Coobie bra I wore after surgery. Ah, much better. I guess that's what it's gonna be until I get through rads and any SEs subside. I'm slathering on the Miaderm, but since I also developed some itchy, red spots on my irradiated breast yesterday, I used a little OTC cortisone cream I had on those last night and that seemed to help. On my way home from treatment I bought a tube of 1% cortisone with aloe, which someone here mentioned. The Miaderm also has aloe and calendula, plus one other thing, and it seems to help. Does anyone think using the cortisone as hot spots flare up might help minimize bad skin reactions as time goes on? I also started to feel a little tired yesterday, not sure if it's from the treatment or if I was just tired, but I must say it's persisting a bit today despite getting a fairly decent night's sleep. I'm going to take my dogs for a walk and try to shake it off before I start working on actual work here this afternoon. Did others of you start feeling some fatigue as soon in treatment as this? Ugh.

Coyote, I'm wondering about the ribs. That skin reaction under my breast is also right over a rib. I'm sorry you're still having that discomfort and hope it gets better soon!

Leslie, I'm so glad you finished and hope you get your strength back quickly, and also that your mother's tests give you hope.

Crowd-funding for cancer treatment is just . . . crazy. Not to do it, that's smart if it has to happen. Crazy that it has to happen . . .

I hope everyone is doing well this week.

When I got to hospital this morning for 13th of 20, the machine was broken and won't be fixed until noon tomorrow. I asked about options because have business trip scheduled for two days from the scheduled end of rads and they were saying would add on missed sessions at end. I persisted and they were able to get me scheduled on another machine this afternoon and hopefully tomorrow so things will stay on course.

Leslie -- glad you are done and praying for your mom.

KayFry -- also had some of the "hot spots" that were itchy. Was explained to me it was the hair follicules (?sp) being angry at the radiation. I just slathered on more Aquaphor, let them breathe a bit in the cooler air, and tried not to scratch. Still have some red spots, but they are not as itchy now.

I think the fatigue is hitting me now -- 3rd week of treatment. When I sit down to read something for work I keep falling asleep, but that's better than the panic attacks.

Happy St. Paddy's Day everybody!