October 2020 Radiation Group

arabiansrock

Since there wasn't an October group yet, I figured I would start one.

I had my simulation on Monday. Wasn't worried about it at all, told hubby no you don't need to take me, this is easy peasy. Well yes it was easy peasy, except that when I walked in and saw the special table they use for prone radiation, it all became real. I started sweating, getting dizzy, nauseaus, etc. Basically a migraine triggered. Everyone there was lovely, I gritted my teeth and got the simulation done, but when they said ok you can sit up, I was like nope, not happening. So they sat me up. Then they said hold your head up and open your eyes. I was like, nope. I think I scared the daylights out of them. Next thing I knew a nurse was in doing all the vitals and a blood glucose. They took me to a room to lay down and rest, and I said call my hubby and have him come get me.

But the techs tattled to my pcp, who called me literally as soon as I had gotten home and gotten in bed, so I had to go see him today. Needless to say, there wasn't anything for him to do but...

They wanted me to start rads right away, but I really want to see the MO before I start rads. I am very worried about having to take AI's for years, and if they cripple me, I will not take them. I will not be a cripple and not able to do the things I love for 5 to 10 years. So what I want to ask him is, knowing that I might not make it thru the 5 years on the AI's, should we discuss doing a few rounds of chemo even tho I have a low OncoType score? No way do I want chemo, but I don't want cancer to come back, and I don't want to be a cripple for years. Chemo makes you miserable for a few months, and you pray for no bad side effects. but hopefully then you go on and recover.

I really feel like everyone is just downplaying my cancer. Oh you have the best kind, you have a great 5 year prognosis. Ok but what about after 5 years? I'm only 59, I want to live alot longer than that. It may be garden variety to them, but to me it isn't. Now I am not saying they have treated me poorly, they haven't. They are trying to reassure me, but I want the TRUTH. Everybody I have dealt with has been absolutely lovely, kind, and caring. But even the "best kind" of cancer can still recur.

It also really bugs me that all the RO's just accept that red swollen, blistered, sore boobs is acceptable result of treatment. And they just say, well if you get red we will give you some creams to use. Whoop de doo, creams are NOT going to heal burnt skin. I'm sure they feel frustrated too because there isn't anything they can give us to help.

Sorry my thoughts are all over the place right now. I think I am in the angry stage right now. I could just spit nails right now.

Anyway, maybe some of us can share our experiences as we go thru this process.

robinorbit

Hi Arabiansrock -- I'm so sorry you had such a bad experience at the simulation. It sounds like you are having a lot of feelings around proposed treatment and have lots of questions you want answered. I hope the MO will be able to give you the information that sets your mind more at ease. Are you able to delay radiation until after you meet MO?

You received a quite low Oncotype score, if I recall correctly, so your statistical recurrence rate should be quite low over an extended period, and not just over a 5 year period. My distant recurrence rate is only 6% over 15 years, and my oncotype was 19. Since we don't have HER+ or triple negative tumors, or Grade 3 tumors, or positive nodes, it's the truth that we are less likely to have distant recurrences. Of course there is always a chance, but it's quite small. I suppose most of the oncology staff we work with regularly see more advanced cancers that require more intensive treatment than we do, and which have a worse prognosis, and they are comparing us against what they know to be a much more difficult future. Treatment for breast cancer is primitive--slash, burn, and poison, as they say. I suppose these treatment protocols have become so routine to health care providers because of the hundreds of thousands of women who are diagnosed and treated for breast cancer in the US each year that it's hard to remember how brutal those treatments can be.

I'll be starting radiation tx tomorrow, and won't be meeting with MO until October 16. I don't know how my skin will react to the radiation therapy will be, as some people have a more difficult time with it than others. I understand the creams and unguents are to keep the skin soft and moisturized, and can both sooth burnt skin, as well as help it to heal by keeping the tissue moist. As to AIs, I'm just going to see how those go with the understanding I can try different types, or try reduce or space out dosage if they cause significant pain and decrease my quality of life. That's the only commitment I can make.

Please let us know how you're doing.

Hugs,

Robinorbit

arabiansrock

Hi Robin

Thank you for the kind words. I have had migraines since about 4 th grade, stress induced. Sometimes I don't even know that I had been stressed, but must have been. The staff at the rad center was totally kind and understanding. Please come back and tell us how it goes for you today.

For some reason I thought that the OncoType score for distant recurrance assumes that you take 5 years of AI's. Thats why I want to ask MO about what that score might be if the AI's dont happen. I see him on Oct 14 and am not scheduled for rads to start until Oct 19 so I have time to have that conversation.

I do have mixed feelings about treatments, but mostly anger. I like the way you described it: slash, burn, poison. The treatment choices are brutal. Honestly surgery is the easiest part of it IF you are able to have lumpectomy instead of MX. And of course, anger at having this disease.

Good luck on your treatments as you continue on this path. I have done a lot of googling on topicals for during radiation treatment. It seems every cancer center recommends different products, lol. But here are the ones that I found that seem to have the most backing/studies or recommendations from cancer centers.

Aquaphor (I'm not sure why this is great, it seems to be mostly vaseline but...), calendula cream, pure aloe vera, Jean's cream (recommended by MD Anderson and many others), Miaderm (recommended by many centers), Biafine (made to heal burns, prescription in US, but can order from England skincolor.net), MEBO cream (chinese origin, did well in tests at preventing stage 3 skin breakdown), CamWell cream (botanical herbal cream, apparently relieves burning sensation), (and then a long list of heavy duty moisturizers that haven't been "studied" but are considered good moisturizers. Oh and of course the Mepitel film or Mepilex lite if they will let you use it. My RO said no, unless the skin breaks down, then they put it on that spot only and you have to remove before treatment.

I bought the Jean's cream and CeraVe moisturizer because it has ceramides in it to help rebuild/maintain the skins lipid layer. I am still thinking about ordering the Biafine and using it once a day. Honestly though, NOTHING will protect our skin because it is being destroyed from the inside out. All we can do is keep the surface as intact as possible so that it can heal on the inside when the rads are over. One thing the RO told me is that it is VERY important to prevent skin to skin contact, that that is what causes most moist desquamation/skin breakdown. She said LIFT the boobs with your bra straps. I really wanted to tell her that my boobs hadnt' seen that kind of elevation in 40 years! Amazon, however is amazing. I was on there searching for rad creams, and found "under boob pads". They are cotton pads that slide under your bra band and go between boob and bra. the idea is to stick them into the intramammary fold to absorb sweat and prevent skin to skin contact. So I bought 2 packages and intend to wear them every day to help keep that area dry. Funny thing was before I saw those, I was thinking about buying some soft flannel and making a homemade version of that.

How many treatments is everyone scheduled for? I have 20, 16 whole breast, 4 boost. I will be prone for the whole breast then flipped sunnyside up for the boosts.

October is breast cancer awareness month. I ride horses and on Oct 1, first thing in the am, one of the tack stores that I shop at had sent an email regarding breast cancer awareness. They are selling saddle pads and riding breeches with the pink logo and 30% of the sales will go to Susan G Komen. So I ordered one of each, should be here today. I googled all the other major tack stores I shop at and nada, only this one, so it has now moved up into my top 2 to shop at just for being supportive of womens issues.

take care everybody and stay safe, covid is picking up again, don't need that in addition to cancer!

Marisi

I just finished my first week of radiation therapy and already my skin is pink and sore. That makes me worried for the next three weeks of treatment. I'll have 21 treatments total.

You may have talked to your MO by now, but mine said chemo is used when they don't get clean margins from the lumpectomy. Radiation is used just in case there are rogue cancer cells still in the breast but are undetectable. I have IDC Stage 1 Grade 2 ER/PR +, HER2-. I'm sure the type makes a difference.

I also just started my second AI yesterday. The first caused daily headaches and sleeplessness.

robinorbit

I just finished the first four of 20 radiation treatments, and so far so good. Honestly, that breast has been so beaten up by the three biopsies and two surgical incisions, hematoma and now seroma, I'm unlikely to notice any minor changes. I was advised side effects would likely begin after second week. I feel my breast is like, “Bring it on!" at this point. It occurs to me I haven't yet let myself cry and be vulnerable about the cancer or the treatment during this 5-month journey. I took one day off work for surgery. As usual i'm trying to be tough. I'm not exactly sure what I'm trying to prove or to whom. I suspect I will have a meltdown at some point, but not sure what will ultimately trigger it. At this point I'm tentatively “scheduling" that for after last radiation treatment early November—and possibly just after Election Day.

Marisi—have you met with your RO about your skin being pink and sore so early in treatment? I would want to know if there is anything you can do about it. Does Aloe Vera or calendula cream bring you any relief

arabiansrock

Marisi have you been moisturizing your breast several times a day? CamWell makes an herbal cream that is supposed to sooth the burning sensation. Stay moisturized and drink LOTS of water. Jean's cream is another one that many people have commented on how much it helped them.

Please check back and let us know how you are doing.

arabiansrock

Well one down, nineteen to go! The techs were all very nice, unfortunately the same ones that I almost passed out in front of before! I reassured them that I would be fine today, and I was. They really are careful about positioning aren't they?

Marisi and Robin - how are you ladies doing? Marisi I hope your soreness has not gotten any worse, and Robin I hope you are just cruising thru with no problems!

take care everyone

robinorbit

Hi Arabiansrock—Glad your first treatment went smoothly. All of the techs are very kind, aren’t they? That makes it easier. I’ve halfway done with treatments and just started to turn pinkish at the end of last week. No pain yet, but my nipple was a little itchy after treatment today. Maybe a little fatigued by weekend, not bad. So, so far so good and I wish the same for you!!

I also met the MO last Friday and he advised I’ll be starting Arimidex (anastrazole) about two weeks after rads end—mid-November. And I “get” to have a bone scan to get a baseline reading on bone density. Did you meet with MO yet and was he able to answer your questions re treatment?

Marisi — How is treatment going for you? Any relief for your skin?

Robin

arabiansrock

Hi Robin

Two weeks and only lightly pink sounds pretty good! I hope I do that well. Yes I have seen the MO, I am starting Letrozole 2 weeks after radiation ends. My ins claims to only cover Letrozole and Tamoxifen so we are starting there and then exploring other drugs if needed. I am also supposed to get a DEXA scan, but have not been called for an appt yet. I thought he was pretty nice and answered all my questions. The only thing that was odd was he scheduled my next appt for 6 months out. that seems pretty far out. How far out is your next appt with him?

Marisi - we would love to hear from you and get an update on how you are doing.

robinorbit

Arabiansrock -- I asked the MO what my follow up schedule would look like. He said I would see him every six months, have a mammogram annually, and a bone scan every two years, until I have completed my 5 years on AIs at least. So my next appointment is in April.

Of course, if at any time I don't tolerate the AI well, or I have any other questions or concerns, I can contact the MO and/or schedule an appointment with him to discuss. I would presume that would be the same for you as well. It sounds like your insurance however has its own limitations. Interesting that they will approve only Letrozole or Tamoxifen.

Whitney923

Robin, I love that you are penciling in your breakdown for a convenient time! Lol hopefully "just after Election Day" won't be a reason for a different kind of breakdown... I feel the same way. Because this all kind of snuck up on me - annual mammogram was hinky, so I had another, they advised a stereotactic biopsy, and that showed ADH, then the excisional biopsy showed DCIS and they had to go in again to clear the margins. It's been a gradual stair step- like boiling a frog.

I have my radiation simulation appointment on November 2, treatment to follow. I have to choose between the 4-6 week course or the 3-5 week higher dose and I don't know what to do. I am exhausted right now just from sleep deprivation (and pms- had to stop my bcp) I guess. Worried radiation fatigue will be worse, and today I am suddenly weepy...

arabiansrock

Whitney you should be getting about the same total amount of radiation with either protocol. I was not given a choice, was just told 4 weeks. But if I had been offered a choice between 4 weeks and 6 I would have definitely taken the 4 week option. Pretty much I spend an hour driving (30 min each way) to be there for 15 min total including changing clothes, for the treatment. Doing this every day is going to get old quickly. With that said, at least the treatment is totally painless, just lay down for 5 min, hold still, they get up get dressed and go home.

Weepy seems to go with the Cancer territory. I have been Angry and Weepy since the day I was diagnosed. Sorry you are feeling this way but lots of support here. I don't know if there is a difference in whether or not you will get fatigue with either treatment schedule. I suspect that it will be similar with both.

Take care, come here to vent. Lots of good advice here. Hugs

GinamarieZ13

Hi Everyone:

I started my treatments at the end of September and today is treatment 17 of 20. Similar to others I had 16 regular whole breast treatments (prone position) and will now have 4 boosts. Started off okay, by session 10 I was pink and sensitive. Now I am red, itchy, and have a discolored areola. No blisters or peeling...thankfully. I use Calendula cream a few times a day and sometimes pure aloe vera...both seem to help. I use cornstarch in the breast crease as recommended. It's been a hectic 3 months since this whirlwind began...all I can say is it helps to have support, flexibility, time for yourself to do what you enjoy or just do absolutely nothing. However you feel, you feel and no one can take that away from you. We are each unique and our bodies will react differently even if we have a similar diagnosis and treatment protocol. This website and groups have been very informative and helpful.

I am now exploring Tamoxifen or not. My MO wants me to take it as I am 49 and not even in peri-menopause and I was almost 100% ER+. They can make recommendations based on standard protocol but I will do my research and do what I think is best for myself.

As a friend keeps reminding me...One day at a time. I created a "Radiation Countdown" chart to keep track of where I started, where I am, and where I will end up. I found it helpful. I used post-its. I have a friend who used squares of toilet paper. lol (Unfortunately, it wouldn't let me add the picture or link to this post.)

You are strong! You are Brave! This too shall pass!

Be well.

Ginamarie

Ladyc2020

hi everyone,

I had my stimulation last Tuesday and just waiting to hear when I will start. The long term effects of rads concerns me and I’m trying to make peace with it, and minimize the worry.

I’m also looking at taking tamoxifen or an ovarian suppressant plus AI after radiation. I’m perimenopausal but have osteopenia so I’m leaning towards tamoxifen. Can you take that for a few years then switch? I am hoping my bones can build up a bit.

arabiansrock

Ladyc I sure understand your worries about long term consequences of radiation. I REALLY did not want to do it, to the point I was willling to do a BX to avoid it, but my BS talked me out of it. When I looked up how much having radiation reduces the chances of local recurrance, I stopped worrying about it and resigned my self to it. It is about a 30% (real percent, not relative) reduction in recurrance. So I just let go of all those emotions. Not sure how, but I did.

As for the hormonal meds, yes you def can take tamox for a few years and then switch. I also hear your concerns there, I have so many concerns about AI's. I am going to try to tolerate them, but have already told my hubby and MO that if they start to cripple me, I will not take them. The things I love to do are physical, and I do not want to be turned into a cripple for the next 5 to 10 years. As it is, my body is already deteriorating, I want to enjoy my favorite activities while I can. Just talk to your MO and ask about alternatives, different drugs etc. Or even taking half dose instead of full dose. They will also give you biphosphenates if your bones start to deteriorate, so they do work hard to protect them. I ride horses, so if I come off, I def need good bones, do not want to go "snap, crackle, pop" like rice krispies!

Hopefully some others will also weigh in and offer comments.

As for me, I am 4 treatments down, 16 to go!

stay strong everyone!

Ladyc2020

Thank you Arabian!

I guess I was so gung ho on learning and researching for a while, I now find myself simply tired and not sure after reading dozens and dozens of research papers.

I want to keep my body as strong as possible, as I have a 3 year old and I used to be very active, running half marathon’s. Hope to get back on track for that again

arabiansrock

LadyC I saw on your proton thread that your RO is going to use "various techniques" to help minimize side effects of radiation. Can you tell us what those measures will be? That way if our RO's aren't doing them we can ask them about doing them too.

I am definitely having swelling in the radiated breast. It was bigger that righty to begin with, now I think it is 2 cup sizes bigger! I need new bras and will have to stuff the other side! RO read me the riot act yesterday about not wearing a supportive enough bra. She sounded very much like a drill sergeant "lift, you must lift them up! More support and lift!" ok, message received. Bra shopping via internet, so much fun.

GinamarieZ13

Arabiansroc: I too have swelling on the left which was already bigger than the right. Interesting about the advice from your RO. I was told not to wear a bra as much as possible to allow it to breath and avoid chaffing. So since I am working from home, I mostly go without a bra and when I do wear a bra I make sure there isn't any underwire (RO said that will cause irritation). So much conflicting advice.

arabiansrock

GinaMarie if you want something comfortable, non binding, non chafing that is just enough to hold them up just a bit, look on amazon at the Rhonda Shear Ahhh Bra. Cheap and very stretchy. I can sleep in this comfortably, and I hate sleeping in a bra. This is what my dr said is NOT enough support. But if your dr is saying no bra, and you want something for going outside like grocery shopping these are perfect. They even have some variations that are kind of cute. I on the other hand will be going to walmart and getting a playtex 18 hr support bra about 2 cup sizes bigger than I wore 2 weeks ago!

Ladyc2020

Arabian - it’s almost the end of October and I haven’t started yet... but what he said (and I’m falling asleep writing this so forgive me if it’s not exact, no notebook next to me) was that they use intensity modulating Imaging, plus the deep inspiration, and that my imaging done shows my heart to firmly In the middle, not to the side, and they can avoid it entirely. I also didn’t get tattoos ( I thought most people got them) as they use newer imaging techniques. I’m not a good candidate for being in the prone position.

Whitney923

Arabian, I am checking out those bras on Amazon- should buy a size larger? I start RT in about 10 days-- thinking about anticipated skin irritation too.

GinamarieZ13

Good Morning Ladies:

Hope everyone is well. I completed my radiation treatments yesterday Even got a fancy certificate. Though it wasn't as awful as I expected, it will be great not having to drive back and forth every weekday and I look forward to my skin returning to it's normal pale color. Need to continue the skin care and I go back to see the RO for a skin check in 6 weeks. I am seeing my MO on Monday for the Tamoxifen / ovarian suppression shots discussion. I'm going to suggest some time before starting. It's been a whirlwind 3 months and I'd like to catch my breath.

Best wishes to all those still going for treatments and to those who will start soon. You can do this. Deep breaths, close your eyes if it helps, and think positive thoughts. This is just part of your journey and this too shall pass.

Ginamarie

arabiansrock

Lady C that is good that your heart is naturally out of the line of fire. I believe the intensity modulating is the norm now. I have a sneaking suspicion, although they did not say this directly, that the prone position is for those of us with larger droopier boobs. Letting them hang straight down probably gives them a more consistent target than laying on our backs with them floppy whichever way, lol. You are lucky to avoid the tatoos, not that they hurt, but who wants permanent dots on their front? At least mine are on my back so I can't see them.

Whitney - I would definitely size up. They are very stretchy, and some people comment that they don't see much diff between sizes, but I went up 1 size from what I was wearing. However I am now thinking I have been wearing my bras at least 1 size smaller than I should have, so I reality I wish I had sized up 2 sizes. However they are still very comfortable as is. And so far at least, no irritation to my skin, they feel sufficiently soft to me. Good luck with your treatments and I wish you minimal side effects.

October is almost over Ladies, we can do this!!! Stay strong everyone!

Ladyc2020

Arabian - tomorrow I start. I was practically ‘excited’ to finally begin now I’m anxious about all the side effects. Ugh.

Whitney923

ladyC, good luck tomorrow! I go in tomorrow as well, but for my simulation. I think I'll start treatments the next week but not sure now.

Should we start a November 2020 thread? How does that work?

Ladyc2020

whitney - I just started a November thread good luck with simulation. Mine was uneventful - no sharpies and no tattoos. All just imaging.

robinorbit

Hi October Rads Group,

Just wanted to let you know had my last radiation treatment today (16 reg + 4 boosts) and no side effects except pink skin and very infrequently a little itchiness. I know everyone's different, but it's always possible your side effects will be mild and I hope they are.

arabiansrock

Robin - Congratulations on finishing your radiation! So glad to hear you had minimal side effects, that is wonderful!!! On to AI's soon. I hope the one they prescribed you works well for you with no bad effects.

I am 11 down, 9 to go. slight pinkness, and some cracking skin in IMF. using mepidel to protect that area, some swelling of breast but better with icing. Otherwise I am carrying on as usual. Had a substitute tech yesterday, regular tech on vacation this week. The sub was a bit cranky to begin with, but after treatment she was much friendlier. I wonder if the other tech said something to her.

nyperr

I will be starting radiation this month. My doctor mentioned that Uniqlo has a great bra for radiotherapy / radiation however it is not listed that way on their website. Has anyone found this bra or another option that is extremely comfortable during this process? If you have, please let me know details.

GinamarieZ13

Best of luck nyperr. I found the Fruit of the Loom Womens Comfort Front Close Sports Bra, 2 Pack (Style No. 96014PK) both comfortable and affordable. I was able to purchase them from Walmart.com

arabiansrock

All done!!! Last radiation treatment was today. Really side effects were not that bad, breast is slightly red, had some cracking in the IMF, but its mostly just really itchy now. I can tell a little bit of skin texture changes on my nipple and the pores are definitely visible so I guess that is "orange peel" but from a couple feet away you can't see it. Only close up. So over all I feel like I got through it pretty well.

I really feel for the ladies who have blistering and more extensive cracking, I can only imagine how much that hurts.

Next stop hormone therapy. All I can do is hope I will be one of the lucky ones who has minimal/tolerable side effects.

Take care everyone, I will still be reading to see how everyone is doing. Stay strong, we can do this!!!