Radiation March 2019

kec1972

Wow Elephant that is great! My skin is not particularly pink, but my nipple is definitely feeling the effects, and my breast is definitely feeling overall sore and heavy

Misha13

I rang the bell!! So relieved to be finished!

For those just starting or afraid to start, for me, it hasn’t been that hard. Drinking lots of water helps with any nausea and going to bed early each night helped with the fatigue.

Next step is ovarian suppression and an aromatase inhibitor!

I'm doing the happy dance today!! Plus it's spring break and my birthday is on Wednesday! I've got a lot to celebrate and feel very thankful for!

Hugs to all!!!

kec1972

Woohoo Misha that is GREAT! Congrats! And happy birthday! I hope you’re celebrating tonight. :

Each_day_2018

Hi Ladies! I will finish up chemo at the end of this month and then start radiation. Not sure if it is right away or if I'll wait a couple weeks. Just figured I'd better start reading up on radiation and get some tips before I start!

Anyways, I just turned 32, have 3 boys and a wonderful husband. We've made it through surgery and 6 months of chemo, so I am ready to get through radiation and have a little break from going to a doctor all the time. After rads, I'll wait 6 months and start reconstruction. The end is so near I can feel it!

beach5

Finished my last boost this morning!! I brought a lucky shamrock plant to the therapists for other patients to pluck or pat (thanks Trader Joes), on their way into treatment. I'm now a combination of angry pink and mottled red, but just dry peeling and no open/wet sores which is awesome. Essentially a bad sunburn. I wasn't expecting such impact on my back, but my chest itchiness has moved to my back in a big way. All in all, very doable and looking forward to removing stickers and sharpie marks! It really has gone by super fast. Hang in their everyone and sending lots of hugs.

Welcome Each_Day...you are in the home stretch!

mrsEO

Congratulations to everyone who has finished or is about to finish this phase of the journey!

I'm 14 down, 6 more to go - I think that today is my last whole-breast treatment and tomorrow I transition to the boosts for the last 5 treatments...and one week from today will be my last one! The tenderness and itching have really kicked in and are driving me crazy but the redness isn't bad and so far no peeling or cracking.

Does anyone else go to a hospital where you don't get to "ring the bell" once you are done? My hospital is fantastic, but they do not ring the bell out of concern/sympathy for those patients who are being treated in a palliative manner and won't get that chance. I completely understand that mindset but at the same time it will be very weird to be "done" and not having something to commemorate it with my care team. My plan instead is to bring them a big basket of treats as a thank you and then go for a dinner with my family and celebrate with some champagne. And than after a couple of weeks to heal we are headed to Antigua! Once I'm back from that trip it will be time for the transition to Tamoxifen...

Fritzmylove

mrsEO, my cancer center does not have a bell to ring either. It was quite anticlimactic once I finished chemo to just get up and leave like any of the other cycles. I did get a nice card from the nurses, and a hug from the nurse that was in charge of my final round, which was nice. I understand the reason why they don’t have one. That’s nice of you to bring something for your team. Congrats on almost being done

Wereflyn

Good Afternnon Ladies

I begin IMRT radiation in the morning. It will be 1/33 for me....I have loaded my bathroom with creams, lotions, cornstarch powder and a spray bottle waiting for my green tea solution the RO recommended.

My treatment will be on my left side and I have had a nipple sparring mastectomy and I’m worried about how to keep my nipple from burning. Not to mention the other things that my treatment on my left side brings. I had 1/3 nodes affected and my BS recommended not removing the remaining nodes so my lymph node area treated with radas well.

I have completed chemo and have begun my Letrozole a week and a half ago. I am looking forward to getting this part of the treatment over and all advice is welcome

mellee

Hi Wereflyn, I'll have my 13th of 32 IMRT sessions tomorrow. I also had a nipple-sparing mastectomy. I think one thing we have going for ourselves over the lumpectomy ladies is that there's limited sensation in our breasts and nipples. So even if we have reactions, we'll feel it less. I have had no pain or discomfort yet. I was very worried about burning, but so far my extremely pale skin is doing good, no redness or peeling.

The main recommendation I have is to slather a cream with 10% calendula on regularly (I use Miaderm and My Girls). If you notice any itching, it's also good to have hydrocortisone cream on hand. Cerave has a good one.

My RO said most people don't notice any skin side effects during IMRT until at least week 3, so we'll see how things go this coming week!

Wereflyn

Millee,

Thank you so much for replying. I guess not having a sore nipple is the silver lining to having the nerves cut to them.

My RO has prescribed a low a .1 percent steroid cream after treatment 2 times a day and a green tea solution 4 times a day. I am adding other creams. I'm sure there are other things they will add if needed....I don't want to wait to see if they are needed. My plastic surgeon was so concerned about my skin that when she put in the expander she made it larger so she would have extra skin should it burn.

Thanks for the cream info I will get on Amazon tonight. Good luck this week!

mellee

Wereflyn, one thing you might also want to look into is Juven. It was recommended by both my breast surgeon and plastic surgeon for healing, as I had very thin flaps. It's also used sometimes for healing radiation wounds. The only problem is that they recently reformulated and the new version includes vitamin C, which most ROs tell you to avoid during radiation. But if you can find the older formula, you may want to try it. I'm taking it twice a day. I can't say with 100% certainty that it's making a difference, but I haven't had fatigue or any other side effects. It's pricey, but worth it in my opinion, especially if your PS is worried about your skin.

Here is a link to the pre-vitamin C formula on Amazon. If you decide to go for it, just double check with the seller to make sure you'll get what's in the picture, not the new formula.

https://www.amazon.com/Juven-30-Packets-Carton-Orange/dp/B001H3QGAM/ref=pd_bxgy_121_img_3/143-6466927-5402604?_encoding=UTF8&pd_rd_i=B001H3QGAM&pd_rd_r=5df21e27-4915-11e9-bf30-a9c66916e9f7&pd_rd_w=VYDRe&pd_rd_wg=Fw3Dd&pf_rd_p=a2006322-0bc0-4db9-a08e-d168c18ce6f0&pf_rd_r=X2RSRPYNC9YA5MPXS4SY&psc=1&refRID=X2RSRPYNC9YA5MPXS4SY

mom2-3girls

I am scheduled to start Radiation sometime in April, after recovering from lumpectomy and plastic surgery.

Is anyone here working full time while going through radiation therapy? If yes, please share how you are balancing all of the treatments with a 40 hour (sometimes more) work week. Or, is everyone basically working part time, or not at all? I'm trying to figure out how I'm going to do this. Thanks!

santabarbarian

I am not working because I am out of town, getting proton rads. But I think it would be fairly easy to work during rads in your same town... I have not been exhausted or ill. A bit tired, and a 'sunburn' that itches, and minor breast pain (nerve zingers) in the last couple of days (I am at 25/28)... but I have only napped 3 times in over a month of rads-- and I could easily have skipped those. Normally the entire appointment from leaving the hotel to returning is under one hour, for me. So the appointment could basically be done on a lunch hour, or close. After work would be the easiest if the hours allow it, because you could just slap your cream on and go home.

It might be good to see now if you can book a predictable daily time at your center, and how long their wait/turnaround generally is... my center gives firm appointments only the day prior, but you have a general idea on Fridays of the whole upcoming week, and (so far) they stick very close to those. My time has been roughly mid-day the whole way (from 12 -2:30 range). My center is very efficient and I have only waited more than 5-10 minutes *once*. Again, this may vary.

If you are getting whole breast plus nodes you will have discolored/sunburned looking skin up to your neck, and you may want to have goopey cream on that area right after rads... if mid day, you will need to think through work clothes with this in mind. A black crew neck mens tee shirt is my go-to clothing choice-- can be under a sweater or jacket-- which does not show a stain from the cream.

BTW: I think "Seven" cream (blue and gold on white box) is very good. So is CamWell "Herb to Soothe." Be very attentive to your skin; for me my biggest SE is the rashy itch and burn, but it luckily waited till the last week to bug me much. I have been able to ignore it and power through.

kec1972

I had the shorter schedule of 16 whole breast treatments and 5 boosts. I only had one day where I felt extra fatigued and mildly nauseated in the afternoon, and that was about midway through. I have worked throughout, albeit part time. I didn't have much of a skin reaction. Tomorrow is my last day, and so far my skin has held up pretty well with my nipple being the only part that is itchy/sensitive. I have been slathering on cream twice per day

mom2-3girls

The above posts are so helpful. I was able to work full time through 16 weeks of chemo, but I have been being told radiation daily is going to make this next to impossible between scheduling, side effects, having to wear all of the creams under work clothes, etc. Not looking forward to any of this, but your information is great. Thanks!!

mellee

I was really worried about working through radiation too. But so far, it hasn't been an issue (as of today, I've had 14 of 32 sessions). I'm not feeling any fatigue (in fact, I'm feeling more energized than I've been in a long time) and skin is only now beginning to show a tinge of pinkness. I wear a wireless bra I don't care about getting stuff on and just duck out to the bathroom several times during the day to reapply the cream.

Heatherautumn

I finished last week. I was able to work through the whole thing. I'm a teacher and was able to get to the hospital and back over my plan and lunch time which fortunately were back to back. I was just super tired the last few weeks.

My skin is finally starting to feel better. Still peeling but less pain & itchiness. RadiaplexRx Gel from my doc and aloe plant helped me the most.

My only issue now is my tissue expander. It feels like it wants to pop out the top of my chest. Can't wait for my exchange surgery!

Elephant

I finished on Monday, 16 whole breast and five boosts. I did not feel any fatigue at all and worked through radiation. I only started getting a little pink during the last few days of the treatment.

mrsEO

Today is my last day of rads treatment!!!!! Redness, itchiness and zingers are at an all-time high but knowing I'm almost done makes it bearable. I worked through my treatment, but did shorter days as my appointments were in the afternoon.

I've got a bottle of prosecco chilling in my fridge and a box of kleenex ready for the inevitable tears. And a big tin of cookies for my rads team as a thank you. They were amazing.

Next up, a few weeks to heal and a trip to Antigua, then bring on the tamoxifen!

kber

HI.  I'm still in chemo and won't start radiation until after I'm done with that and surgery, so probably not for several months.  I'm curious to hear from those who have done chemo and now are in or just finishing radiation - how would you compare the two in terms of side effects?

Was the fatigue worse or better during radiation?  Were you nauseous with radiation?  Besides the impact to your skin, what else did you have to manage?

Thanks for any insight you can share.

Kristin

kec1972

Last day here as well! Rang the bell this morning. Happy to say I got by this part of treatment with minimal SE's. I'll get a 3 week reprieve then I'll start tamoxifen. Good luck everyone!

Vgmggroup

hello everyone, i was diagnosed with Stage 1A cancer (hadn't spread) in October, got mastectomy done in Nov from Sloan and just completed 4 rounds of TC chemo. While Sloan said there is no radiation required, our local provider has called us for a consultation on if they think radiation is needed.

Are there any specific guidelines doctors follow when they decide if radiation is required or not.

Any information will be highly appreciated...

mellee

Vgmggroup - yes, there are very specific guidelines for radiation following mastectomy developed jointly by the American Society of Clinical Oncology, American Society for Radiation Oncology, and Society of Surgical Oncology. You can check them out here:

https://ascopubs.org/doi/full/10.1200/JCO.2016.69.1188

Radiation is typically only recommended after mastectomy if your tumor is larger than 5 cm, has spread to the lymph nodes (and not even always then!), spread to the skin, or has positive margins.

Vgmggroup

thank you so much mellee for all the information. Mine was less than 2cm, hadn't spread and the surgeon from Sloan had stated that she took out some extra skin just to be sure. Will see how the consult goes with the local radiation oncologists.

Naesha

hello ladies, I completed my radiation yesterday :-). It feels good to ring that bell and i made sure that my husband takes the video of it. During the radiation i didnot have any SE except the redness and rashes but towards the end i felt fatigue. Yesterday was last day. I was feeling fatigue yesterday and still feeling little today as well but I don't want to complaint as Radiation is completed. I know this Fatigue is only there few days so i think i can handle it . Other than that i am using the Aquaphor daily on the rashes and itching cream as well. I am done with all my treatments so next will be the replacement of TE in next 6 months.

My warm wishes to all the ladies who are still going through the radiation, one day at a time and we all can beat this stupid beasts.

take care ladies

santabarbarian

Yay Naesha!

Right behind you: I just finished today. 28/28. My boob is sore and red and the skin is peeling a little but I made it -- I am thrilled to be done! I rang the bell too, which was nice considering my chemo center did not have a bell!

It really only got to a bothersome level of discomfort for the last week. It is however a lurid red -- bad sunburn red. I did not have much fatigue. Really my skin issues were the worst part and I am told in two weeks I ought to be healed.. Someone recommended a cream called "Seven Cream" that has been great. I rotate that with Miaderm w 4% lidocaine, organic pure aloe vera and a steroid ointment that my RO prescribed.

Hang in there people!! You will be over the finish line soon!

Misha13

Congrats Santabarbarian, Naesha, MrsEO, Kec, Heatherautumn, and elephant! I’m sorry if I missed anyone!!

I am ten days out and have no pain at all. Skin is peeling and red, but aside from a couple zingers, it usually doesn’t hurt. My treated foob is very tight and needs stretching and massage. It actually looks smaller and tighter than the right!

I am grateful to hear your stories of finishing but also that you are doing well. I don’t think rads is even on the same planet as chemo! Chemo was pretty awful for me. Rads was a minor inconvenience!

Prayers and blessings for us all!

kec1972

Thank you Misha! Glad to hear you're doing well. I wish you all the best now that you've completed treatment!

pcranky

Hi All,

I just did 22/30 and I only have 3 more whole breast followed by 5 boosts.

I had an easier than average time with chemo and I think i'm having a harder than average time with radiation but its manageable thusfar.

I had almost no symptoms for the first 3 weeks and then in week four I got em all at once. i started having "cracking" under my right breast. The whole treatment area turned lobster red. I'm super itchy, and the cracking wounds hurt if anything moves.

Adding complications are the fact that i am allergic to sulfa so no silvadene. They gave me xeroform dressings for the under-breast area held in place by plain cotton gauze. They originally put telfa over them but I was allergic to that as well. (go me!)

They finally ended up giving me a mesh "tube top" to put over the area to keep it from moving. The nurse was explaining how to put it on and I told her that as a child of the 70s I didn't need instruction on how to put on a tube top I sure never thought I'd be wearing one again. I wear a bra over it (more on this in a second) and it keeps everything kind of locked down.

As for the bras - there are lots of great "radiation minded" bras out there but they all seem to be for people who have more modest sized boobs. Someone suggested nursing bras and omg they are fantastic. I got a few different types and the sleep bras have been a lifesaver. They all have really.

I am pretty uncomfortable, particularly when i have to change dressings. If anyone has any magic tricks for healing the under-boob seam (there has to be a better name for this), I'd be most grateful.

Thanks!

santabarbarian

Ouch, I feel you!! Domeboro is a drying and astringent compress/soak that is very relieving. Comes as a powder and you add water. I make it up and refrigerate before use. Also very dry and peely. It is hugely relieving and helps things peel and turn over. I also use Seven cream (slathered on it makes it feel soothed, less dry and tight) cold aloe Vera (100 % organic), and Miaderm w 4% lidocaine is relieving too.

It will be over soon!!