Radiation October 2018
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I got tattoos two years ago (small blue dots that I honestly can’t see), and then got a few additional this time (including one specifically for boosts because I’m getting those while lying on my side. They have to re-mark me every few days when the marker has gotten hard to see or has rubbed off completely. I don’t wash that area and don’t put lotion near the marks, but particularly over the weekend they pretty much fade away.
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I had my first treatment today. I got actual tattoos (instead of something covered with tape) at my mapping appointment. I will be having the treatments in the face down position. It’s not uncomfortable, just awkward climbing on/off the table. One treatment down, nineteen to go!
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Hi Ladies! Had my simulation today and my first actual radiation treatment is tomorrow. I have 33 treatments so seems like such a long way from now. I have to do the breathing tube thing since they are treating me on the left side. I'm super anxious about side effects. I'm finally feeling like myself again after all the surgeries and chemo so hopefully the fatigue is not bad. Also hoping the skin won't get too burnt. My PS kept warning me about extracapsular contraction so holding my breath that that doesn't happen either. Now just to figure out how to lotion myself up at work!
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My doctor prescribed me a cream called Mometasone. She says that MSK did a study on the effectiveness of different creams during radiation, and that one came a winner. I guess I’ll know soon. October 8 I am due for setup, whatever it is, and the next day the nuclear winter will start for me.
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Hi, everyone,
I finished chemo on 8/2, had a mastectomy on 9/10, and will be starting radiation on 10/22, or thereabouts. 25 treatments, no boosts. I was diagnosed a year ago - this has been such a journey and I'll be so glad when I'm finally done with treatment. Nice to meet all of you!
Linda
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Hi, I am having my first meeting with the radiology team next week. Nervous about fatigue and side effects. One of my main concerns is can I briefly interrupt the treatment, my mother is in hospice. Hoping that I will be able to get my daily walk as that is important for bone density. Thanks for this thread.
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Dates are in. Tomorrow is the first day of radiation. I will get 15 plus 5 boosts.
I am expected to be in the clinic for 1.5 hours the first day and half an hour from then on. The actual radiation takes like 10 mins but theres a bit of setting up and positioning. The radiation is given in bursts of 20 seconds when I will have to do the breath hold. I am getting radiated on my left side.
RO said not everybody benefits from the breath hold technique. Its a good idea to practice the breath hold lying down with arms stretched over your head specially as the incision under the arms might make staying in that position uncomfortable for long periods of time. That being said, I do not know if I have done enough.
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Frog--I did the breath hold last time and it was not nearly as difficult as I thought it would be. For one thing, the longest zap I had was 17-18 seconds (I got two each from two different angles, one about 4-5 seconds, and then the longer one). They also told me if for some reason you move out of position, the machine will automatically shut down, so you really shouldn't worry about it. It also gave me something to do while I was getting zapped--counting the seconds in my head. (In fact I'm still counting seconds on the right side because why not?) Really it's not a big deal and you'll be fine.
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I started on Monday and it was very emotional for me. I honestly have been pushing through this whole journey. Not feeling sorry for myself and focusing on 2019 when this will all be behind me.
I dont know why, but changing into the gown, walking into the Cancer Center daily, having the affected breast handled... just made me feel like a patient.
I just wanted my old pre cancer life back and I thought I would feel like myself after chemo... but I don't.
I met with my RO and she said I may feel side effects by the end of next week. She emphasized the breast may feel heavy.
I will be sure to report any if they arise!
Hope you all have a great day!
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Just got back from final simulation; 2x/day treatments start tomorrow.
Bring on all the fun. I can't wait for this to be done.
My RO said I could be feeling side effects as early as next week as well.
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Hi Girls, I'm going to stop lurking and say hi...Hi. I too have been very emotional about radiation and I'm not sure why it is upsetting me so much more psychologically than chemo and my BMX did, but it is. I had my first treatment on Monday and I was done in 20 minutes. Yesterday I felt like I was doing the exact same breath hold as the day before, but they said I wasn't going deep enough so it ended up taking 40 minutes and the techs seemed a little grumpy about it. I hope I'm going to have better luck today.
I am wearing Mepitel Film over as much of the radiated area as possible, there are studies that indicate much less skin damage and zero desquamation with this wound covering in-place. I'm hoping for the best for both my skin and my tissue expander, but it's too early to tell.
Glad to have this board and happy to share and support you all as we go through another treatment.
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welcome sidalee and thank you for sharing. I thought I was the only one emotional about radiation. I am sorry your team was grumpy, Im sure that does not help
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"Just wanted my old pre-cancer life back" - that's sure what I feel. Hope your radiation goes smoothly.
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For some reason I am also scared of radiation more than I was of chemo. And I can’t even look at my old pre-cancer pictures without crying. I didn’t even realize how happy I was then
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I had my second treatment today, doing the breath holds as well. My longest one is 30 seconds and it's doable. They also put this copper looking mesh thing over my boob to apparently ensure that my skin is getting a proper dose. The tech said the simulation showed I had cold spots and the mesh device will help my skin get the dose. I don't know what that means then in terms of my SEs--I wonder if my skin will burn more.
Hello Sidalee, can you link to those studies? I'd love to learn more on how I can minimize the SEs. Thanks!
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Back home after the first treatment. The actual treatment did not take much time but they do a lot of fuss to adjust to the exact millimeter.The therapists mentioned that it will take lesser time tomorrow onwards. I was in the clinic for 45 minutes.
Sidalee, does the mepitel cover your nipple as well? It doesnt for me and I am concerned about how the radiation will affect it.
Thanks Ingerp, breath hold was not that bad.
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Here's the link Domzie: https://www.ncbi.nlm.nih.gov/pubmed/24486117 The idea is to support the healing process by reducing friction to the skin and maintaining moisture levels.
Frog~ my mastectomy was skin-sparing so I don't have nipples at the moment, but I did insist that the techs place a strip of Mepitel across my scar. I have the covering on just about the entire area, but it has peeled away from my shoulder quite a bit and is lifting in the center of my chest a little. They also said it won't adhere to my armpit so I guess that will probably be my problem area. I needed about 2 1/2 of the 15 x 20cm sheets to cover everything and it looks like we may have to start fresh next week, this is going to add up so I truly hope it works.
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I was also really emotional yesterday. It was just "too much"....the machine was huge, imposing, red lights everywhere to tell the machine to shut down if I fall out of my "gate" for breathing during treatments, and green light grids on my breast, and measurements. Thankfully have a great team and they were really supportive. I was taken aback abit at all this, since I had already had my simulation and thought this first treatment would be quick. Oh well, today it should be shorter. And I'm just glad the breathing thing went much easier than I anticipated.
And I have to say, maybe this is just in my mind and a placebo affect, but to my my incisions seemed painful and I felt swollen in my L breast a few hours later. I hadn't had pain in my incisions for about 2 weeks, so like I said, wonder if it's in my mind or what. Going to ask my team today at RADs.
Continuing to slather on the candela cream per instructions, 3 x day. LOL - I think my R breast is jealous.
I did ask for a guide as to where I should be sure to get the cream, and my team said, "more is better". So they said to be sure to get the entire armpit, rib area, cleavage, crease, and up near the clavicle. She emphasized that the armpit is usually the worst for most due to the extra rubbing and moving.
Here's hoping the best for all of us....hugs and healing
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Sooooo, it wasn't in my head at all. I go in for my 3rd treatment today and my L breast is already pink, heavy, feels swollen, and hurts all over, especially the incisions. Can't go without wearing some type of support, the weight is just too painful.
I was REALLY worried about this due to my other chronic health conditions, which include CIRS (chronic inflammatory response syndrome), Raynauds Syndrome (circulation issues), and other things in my "wheelhouse". UGGGH.
I'm totally depressed by this turn of events. I have 5 weeks of this to go, plus the 2 to 3 weeks after treatment where symptoms continue to increase, and yet I'm already at this point......gonna call my team and set up a time to speak to my nurse prior to my RADs today. Thankfully no matter what I will be seeing my RO on Monday.
Hope they have a good strategy to roll out for me. Fingers crossed.
Wishing better luck for everyone else!
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5 treatments done and 15 more to go. From an emotional standpoint, I'm glad to have Monday off. (Clinic is closed for the holiday.) I'm a little tired today, but I can't tell if it's from the treatments or just my life. I'm going for a walk later; maybe that will help. Spoonie, I hope your treatment team can come up with a plan to help you!
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Hi! I just had my first radiation treatment yesterday. The treatment itself is no big deal. The nurses are very nice and made me feel very comfortable. I applied momentasone cream and a moisturizer with aloe from a company called Hawaiian Moon. I woke up with a heavy feeling in the radiated breast. That was 2 hours ago. I don’t have that heavy feeling now. What else are we expected to feel? When are the skin reactions expected
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HiPopcornme,
I had 4 treatments this week and no skin side effects. My radiated breast does feel tender (almist like when my period would come) but thats about it.
My RO said I may see side effects by the end of week two, but my tech said thats not nessecerly true... he sometimes never sees skin reactions... but I should def expect fatigue...
ill let you know how I feel next week
RiRi
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@ Greenharbor - Thanks so much! Hope the walk helped you a little bit - I know getting some fresh air always seems to help a bit. With the fall colors happening it's a nice walk in my area. Enjoy your 3 day weekend!
My symptoms are getting worse....
Yesterday was #3.
I did go in prior to my RADs yesterday to see the nurses. I also see my RO on Monday so she will assess things after the weekend. What the nurses said, since I am experiencing effects so ramped up and sooner than usual (again they agreed most likely due to my other illnesses) they may look at extending my radiation treatment out a few weeks, decreasing the treatment strength a bit and see how I do.
In the meantime, the gave me specific directions to follow to decrease the swelling and asked me to increase the amount of times I am doing my physical therapy exercises I was given prior to RADs. I'm attaching what my team sent me home with, maybe it might help others too. Most of it is common knowledge and what we've been instructed on prior to treatment, but good reminders none the less.
They do suggest walking, some yoga, and range of motion excercises to help manage the swelling.
I am BEYOND thankful for two days off at this point! Normal OTC pain meds aren't really cutting it, after 3 treatments, so I am going to ask for a pain cream or something on Monday as well. I've decided to just go back to wearing my cotton front-closure non-underwire bras like I did after my surgery. This has helped with the pain too.
Has anyone else experienced any amount of nausea after their treatments?
I am actually to the point of vomiting after mine. This last for about 2 or 3 hours afterwards. I have prescription anti-nausea meds already due to prior health conditions, so I'm just going to start taking a dose prior to my daily treatment. Ugggh.
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Also - Maybe this will help others?
These are 5 simple range of motion exercises that I was given during my initial Phys Therapy prior to RADs.
IMO, disregard the title of the pamphlet, as they gave this to me and I didn't have drains from my Lumpectomy. These were given specifically to use prior to RADs to maintain range of motion going in to treatment.
My PT team stated that doing these a few times daily is supposed to help maintain shoulder/chest range of motion, as well as prevent "cording" of the arm muscle, which sometimes can be seen as an effect of breast radiation.
Sending hugs and healing to all....
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thank you spooni
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Hi Spoonie77, I was just curious if you were also on ovarian suppression since you are pre-meno? I'm 39, halfway through radiation but started my ovarian suppression (Zoladex) about the same time as radiation. I will start Tamoxifen only after radiation.
I have used no special oils and creams except for my normal aqueous cream. That said, the technicians at my centre place Mepitel film over the breast which has been known to reduce damage to the skin without interfering with treatment. It is the protocol at my radiation centre.
All the best to all in Oct radiation!
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Hi Palesa - I'm not on an ovarian suppression protocol. When women are under 40, I understand it's pretty standard to be on. As is the case for you. It was my understanding from my MO that due to my being closer to 42 that the Tamoxifen will likely put me into Meno. If it doesn't, there was a small discussion of adding a med or having ovarian removal as I can't have children to begin with, to lower the chance of reccurrence. It was really a brief convo as my MO seemed it an unlikely chain of events, so I could've misunderstood somewhere. So, it sort of all depends on what my body decides to do going forward.
How are you handling the RADs and the ovarian suppression? Being halfway through must feel encouraging. I'm marking down & crossing off the days on my calendar. Bet you are too!
Thanks for mentioning the mepitel film you're receiving. I sure hope it works as intended for you! Fingers crossed. Be sure to keep us posted. The less SEs the better, right?!
Sending healing vibes out to our whole group
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I can honestly say 'so far so good' with ovarian suppression and rads. I'm very grateful. No serious SEs. My energy levels are high still, I'm sleeping well at night. I did experience an early period two weeks into Zoladex and a mouth ulcer (to be expected with sudden hormonal change). Other than that rads going ok. I've been able to continue going to work comfortably. Might be helping that I walk for an hour daily.
I've got implants in so for those in the same position, my PS put me in Singulair (montelukast) to reduce the risk of capsular contracture from radiation.
Best wishes to all and lots if hugs... soon we will get past Rads
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Hi Spoonie77, thanks for including pictures of these exercises. Will give them a try assuming that's ok with the medical team.
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Question to women getting 20 sessions: how many Grey will you get at the end of RT, 40 or 50 Gy?
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