MARCH 2018 starting RADIATION

It seems to be the week for ups and downs. Staying near my treatment center during the week makes sense in so many ways, but I've started to hate it. Last week it was a novelty: Responsible only for myself. No family drama. No obnoxious neighbors. Much larger city. This week, I miss my cats. I miss sleeping in my own bed. Some of the other guests (I'm at a Hope Lodge) are so crass and obnoxious that I'd avoid the kitchen and dining room if I could, but they're the only places we're allowed to have food. Etc. Etc.

Today will be 8/25. I definitely have a radiation tan and some pink spots. On the upside, when I saw that my arm pit was still white and asked about that, I learned it's not receiving radiation. I can wear deodorant! It is confusing though. But I thought about my node biopsy and removal (1/3 sentinel nodes) and none of that was in my arm pit. I still plan to ask my RO about it when I see him on Monday. I know my lympho-vascular invasion primarily is in the breast bone area.

DoubleBloom: I found a lump. I was 41 and hadn't gotten a baseline mammogram when I turned 40. After a scare in my 20s, I knew I had dense, cystic tissue and that even 3D mammograms wouldn't be useful for me. I'd just switched physicians. My old one would say things like, "You don't have the breasts you did in your 20s." Well, no. But it's the same tissue. My new dr. got me and my lump at my new patient appointment. She sent me for a mammogram with insurance authorization pending for an ultrasound. She explained that without a mammogram, my health insurance wouldn't cover more diagnostics.

The mammogram found nothing. Literally nothing. The ultrasound showed an indistinct blur. Yet I was offered a biopsy that same day. I found out the next day I have TNBC. I also was told it was Good I hadn't had a mammogram before finding the lump because my insurance would have denied further tests anyways due to the negative results, my age and no family history.

Off to treatment!

Hello to everyone. I don't post much but read all posts and feel SO lucky to be in this group. I have very few of the issues you all do but feel empathy for every one of you. I live only 5 miunutes away from my tx center and only work 2 1/2 days a week. The only issue I am having after # tx9 is some stinging under my arm and itching and still can't sleep on the affected side so sleep is not as restful as usual. maybe that explains my ocasional irritability! About 3 weeks post op, I developed a very red and warm to touch area in most of my lower breast. The Surgeons PA said it was probably serous fluid that leaked under the skin and was pulled dowm by gravity. But she gave me an antibiotic. Took them and it almost was back to normal when I started rads, The RO had seen the redness at my Sim and said it would'nt interefere with tx. Well, the first day it got very red again and he just shrugged his shoulders and said he didn't know why but didn't want to rx more meds. So , I have stopped worrying about it. It does get red now after each tx but seems to fade some in the evening .So maybe this is the new normal! I am walking at least a mile /day and so far, don't feel fatigue. I am looking forward to a sunny Sat . so I can work in my garden ! Happy Easter to those who celebrate it and Happy weekend to the rest !

Such brave women. I am in awe of what most of you have gone through or are continuing to go through. My gratitude journal - which I completely believe I will start this weekend - should start with how grateful i am for my relatively simple bc journey compared to others. I've actually felt that all along. All you need to do is see children fighting cancer, or young Mom's being diagnosed, large distances to treatment centers, to realize so many others have much larger challenges than mine. This is one time it pays to be just a tad older.

I finished 4/20 this week. Monday will be the first time back to the RO so we'll see how that goes. No issues to date and very grateful for a weekend off.

Hope you all have a restful weekend.

FelineMum - I can relate to that feeling of trying to avoid the obnoxious and crass behavior. Now that I have had two days at home I feel much more relaxed and realize how much the train commute and work environment were adding to my stress. The week after next I will leave work for 3-4 weeks - chipping away at the stressors. I hope you have some options to help chip away at yours. A long commute doesn't seem fun, but for sleeping in your own bed? The kitties? An AirBNB room on a weekly basis could be much more affordable than a hotel, plus you get a home environment? I did AirBNB a lot when it was new, Manhattan at $60 a night for example. I never had a problem. And last: the mammogram vs ultrasound vs CT, etc. still baffles. For the benign cyst last Monday they did both a mammogram and ultrasound. Nothing on mammogram, very obvious cyst on ultrasound. Yet a regular wellness mammogram is what revealed the microcalcifications that lead to my diagnosis. It's confusing. I will always ask in the future - why this instead of that? I will irritate the radiologists I'm sure because it will seem obvious to them. But not to us - so I will ask. Wishing you some peace in the midst of all this.

Veeder - is it worthwhile to check out your AirBNB options close to treatment? If either of you decide to do this let us know. We could be on to something. Gratitude for home goes into my gratitude journal!

Paco - I've experienced a bit of tingling every time after treatment. Nothing terrible and it goes away quickly.

Flowergal - hi!

metoo - you summarized it beautifully. Such larger issues in a world of cancer issues. I sat next to a chatty Liberian woman in the rads waiting room this week who was in for rads after a brain tumor - we talked for 20 minutes before I realized she couldn't see me. The tumor had affected her optic nerve. She was funny and uplifting and teased me about having two breasts as compared to her one brain.

I STILL need to look up the name of that radiologist back in November who noticed those three little calcifications on the otherwise unremarkable routine mammogram pictures. That radiologist could have easily sneezed, looked at a text or just been dialing it in that day. But they found this i me, and I truly intend to send a thank you note.

Happy Easter everyone, however you celebrate. With love and admiration,

Kay

The city my cancer center's in banned AirBNB a few years back. Considering its chronic hotel room shortage and aspirations to be a tourist destination, it was foolish at best. I have used AirBNB elsewhere and liked it. Where I'm staying is operated by the American Cancer Society and overall, it's really nice. But I don't always want to be around other people. If I want to eat, it's use the communal kitchen/dining room or go out. I do understand the need to control bugs, rodents, etc.

And most of the other guests are fine. It's the ones who are rude, however, that I seem to run into when I least need it. Like, a trio of women with various types of cancer whining about having to get mammograms and using graphic language for the procedure and body parts. From the average person in a different location, whatever. From women who really should know that, if nothing else, there probably are women with breast cancer who can hear them, STFU.

I only stay three nights a week and it does make it so much easier and more affordable to do rads. And while I don't have a supportive family, I can rely on them to cat sit.

I feel I am late to the group but I had my first radiation treatment March 29 - glad to be started.

This thread has been very informative to me

I will be having 33 treatments over the course of the next 6 1/2 weeks. I may get sick of the drive but thankful it's only 1 hour from my home.

They are radiating me in my armpit - internal mam lymph nodes and clavical... also my chest wall.

This is my 2nd time with breast cancer - the 1st I caught it early and didn't need chemo or radiation so the last 7 months has been all new to me.

hi Ladies,

Just got back from session 4 of 20. I am feeling confused and frustrated and I am looking forward to seeing the RO tomorrow. I have been getting multiple x-rays at every session. Is anybody else? I feel like that is excessive exposure and it is very upsetting to me that they can't get me lined up on the table for the therapy without every single time taking x-rays. Is that typical?

Paco, I get x-rays at least twice a week and also on the days that I don't seem to be lining up correctly. I believe that the exposure is factored in to the whole treatment and the ROs make every attempt to keep our heart, lungs, bones, etc... safe. I read this quote months ago on another thread. "I hate the side effects (of chemo) but I love that its keeping me alive." It is frustrating though that so many of the treatments that keep us alive come with strings attached.

Kaywrite: I love the term "morning pages." I knew an artist who did a tiny oil painting every morning to keep his inspiration flowing. Your story about meeting your second cousin was amazing and gave me goosebumps.

Felinemum: I hope your next two and half weeks go very quickly. Your story of detecting your cancer sounds similar to mine. I am grateful that the good Lord gave us the twist of events to find it before we had any distant mets.

I've got only 9 more treatments left. Happy that I'm not feeling any fatigue yet.

Hoping everyone has a spectacular week ahead.

Paco - I have to hold my breath, so they have to talk to me. Otherwise, who knows? Anyway, I'm just assuming they are not doing X-rays every day. I'm asked to hold my breath when I first arrive so they can assure the lines are aligned with the beam. Then five times per session, in what I assume is the actual radiation. I'll ask today.

(PS - Last week was my inexplicably cranky week. I really got on their case for making me get there at 2:00 for a 2:15 session and then never calling my name until 2:45. So I wouldn't be surprised if they didn't want to talk to me. The last two appointments were on time, though.)

Re: x-rays. I get an x-ray every time. They adjust me first by hand, using tattoos and calling out numbers. Then they leave the room and the x-ray is the first thing. Usually then the table adjusts, presumably by the techs as they watch their screens (which they showed me on the first day). Then on to the actual treatments. I don't like the idea of the extra x-ray but I'm guessing the amount of radiation is very low compared to the treatment rays. Also if it helps keep my heart out of range I'm good with it!

I had an extra long weekend, since they take Easter Monday as a stat as well. I'm grateful that I have a little extra time to heal before my final 6 (2 regular, 4 boosts).

I too have xrays every treatment with the accompanying table adjustment. Figure having the treatment be accurately beamed to do the most good and least harm is worth it. Today was the last full breast treatment, tomorrow will be the first of eight boosts. So looking forward to being done with rads!

How is everyone doing with fatigue and skin changes? I'm feeling less tired this week, which I did not expect. I' m seeing some tanning but skin in general is doing OK. Nipple is so dark my breasts don't look like they belong on the same body.

Veeder--We're pretty much at the same place in treatment. I had 14/20 today. Glad you got to go home over the weekend.

Tomorrow they plan to measure for the targeted treatment to just the tumor bed (treatments 17-20). I thought my skin might get better after the whole breast radiation was over (in three days). But today the RO said to expect my redness, itchiness, and burning to get worse before it gets better, and his assistant said that it could worsen for a week after treatment stops completely. Fortunately the fluocinonide cream has stopped the night waking from itching. Still using the Midaderm along with the other cream, and it's great for moisturizing the whole area. Having the weekend off always seems to make my symptoms better (even if that's all in my head). I got through a weekend with my daughter and her family (including my three grandchildren) and did not have to nap when the two-year-old took hers, so I considered that a success!

Doubleblooming--thank you. Last week was up and down but this week so far has been fine.

About traveling for treatment:

After my diagnosis, when I saw a local surgeon, I asked for a recommendation for a second opinion. He suggested someone three hours away at a large medical center/teaching hospital. We traveled to consult with her, and I chose to have her as my surgeon, particularly after experiencing the level of expertise and knowledge she had after our first consultation. She ended up recommending a second biopsy, for an issue they felt must be identified, because it meant the difference between lumpectomy and mastectomy surgeries; the suspicious area turned out to be benign. All of this meant traveling back and forth several times, and staying in a nearby hotel for each visit/treatment.

After my surgery was over, I saw a local medical oncologist, who recommended a local RO; I like the RO and his staff very much. The local clinic where he practices is a 15 minute drive from my home. My daily treatment takes no more than an hour including travel. Even though the well-known surgeon recommended an MO and an RO in the practice far away, I feel like the care I'm getting from the local RO is probably equal to that of the other practice because he trained at the large teaching hospital where I had my surgery. (And when I mentioned him to the surgeon, she agreed--because he trained in their practice. Ha ha!)

Traveling for treatment can be quite wearing. Long story I won't relate here, but in the 1990s I had a family member with leukemia who had to travel back and forth for treatment for years (and I was with her most of that time). It's isolating to be far away from everything familiar and everyone who cares about you. If you have to travel for treatment, I hope you're not away for very long, and I hope you have someone with you at least part of the time you're away.

Hi Paco and everyone . I also had my first xrays last week and had no idea what was going on! They lined me up as usual but the machine did not start the usual clicks and buzzes etc so when they came back in to the room I said " something different today? Then they said they were doing xrays to make sure i was lined up correctly and would do them weekly. I wish they had said something before they started as it made me nervous not knowing what was going on, only that it was not the usual procedure!

I am glad I got tattoos because that is what they mainly use to get lined up rather than the marks. I asked my tech about the marks as most of them had worn off but she said they take a picture of them the first time so that is always in the chart for reference and so I assume they know what they are doing!!

My appointments are usually late like many of you, but I asked the tech about this and she was quite apologetic, saying if the chemo patients are late, it puts them behind as well. So since I can't change it, I just try to go with the flow and bring a book to read. I had #10 of / 20 today with not too much side effect other than redness and some soreness & itching . And it does fade almost back to nomal on the weekend so I assume it will eventually go back to normal after all TX is finished. I've been going mainly braless, but did get some crop tops by Bali called "comfort revolution" ( found them on clearance rack.at Kohls ) which are soft with no side seam and provide just a little support to keep my boobs from jiggling when I'm out in public

METOO- I can't believe that your treatment team didn't tell you they were changing the plan. That's really lame! Glad you will still get to go on your trip. As you say, others have a much harder time and like you, I don't need Chemo and am grateful for that.

Beaver- I am having no fatigue so far and walk 1.5 mi a day and am eating protein snacks several xs a day as the nurse recommended .

Hope you all have a good week.

Good luck! How did it work out? Too bad your hospital doesn't have a free place for you to stay. We need a network of women suffering from breast cancer to help each other out in such instances.

I am so very tired, it is really a struggle to keep my eyes open at all. I've had 4 treatments so far, back and brain, I sure hope this isn't cumulative and gets worse as we go, I really won't be able to get out of bed! Nausia was awful yesterday but seems better today, can't pin point why really, just is. *sigh* two more weeks to go.