May 2020 Radiation
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PMML: I can identify with your feelings. I have been reluctant to post or tell anyone but realized that is what BCO is about. To express our thoughts and feelings on our breast cancer journey. When I go to radiation I see patients being brought in by stretcher, wheelchairs and walkers and some much younger than me. I had no issues with surgery or radiation so far. Haven't started femara yet but don't anticipate any problems. Our church is bringing meals 3 x a week and I feel guilty. My sister asked me today if I was in denial since I look normal, not fatigued or sick. I guess it is just a big mess of feelings and emotions that we are going through. I am blessed to have low grade early stage breast cancer. Actually twice!! Just a bump in the road.
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I had my first treatment today. So far, so good! The techs are super friendly and upbeat. I was dreading the daily drive, but I found a great audiobook. Now I think I'll enjoy the drive. I'm finally feeling like myself after chemo. I feel like I’m so close to the finish line. Only 27 more treatments to go.Right now ife is good!
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One down and 27 more to go. It lasted a lot longer than I thought it would. Does anyone else get a metallic taste in their mouth during radiation, or was that just in my head?
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dots74: No I did not have any metallic taste during radiation but who knows. Maybe it happens for some. Yes the first treatment is almost double the remaining treatments as they do films. Actually they do films once a week. Had my weekly films today but only added a few minutes. So far so good for me. Finished # 6 today out of 15
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I haven’t had a metallic taste. Today I had my second treatment and it was quicker than the first.
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Nobody explained that yesterday would be longer than today. I very much hope that is the case. I mentioned the fact that it was longer than I had expected to both the tech and the doctor. Neither of them had a response to me about films or anything. I’m not sure why, but I suddenly have very angry feelings towards cancer.
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PMML and Quinnie: I can relate to the feelings as well. My journey to my dx of breast cancer back in 2004 at the age of 33 to me was a much bigger challenge. I had had a single mastectomy, chemo and radiation. This time I had a Lumpectomy, about to start 30 radiation treatments, and then Letrozole for the next 5 years. I haven't voiced that I've had cancer this time around for a couple of reasons...with the virus I'm not really seeing many co-workers and don't want to bother anyone with worrying about me except those that I have intentionally wanted them to know, only my direct support team in my family knows and a few neighbors. I'm not sure why I feel this way but for some reason this time around I don't feel like sharing too much with all that is going on out there. However, I am going through something it might not be noticeable on the outside but yes, I have to remember I'm going through this journey too and if it's slips out of my mouth to others so be it. I need to learn to accept the support if extended as well. Overall I'm in a good place emotionally, I'm not in denial, but rather making sure I do each step necessary to beat this again.
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I needi to vent and I am sorry but I did 20 radiation treatments. Friday 5/22/2020 was my last treatment. I thought it was humiliating; exposing both of my breast to the two tech every weekday for four weeks. It was horrible and one of the techs was a man. They wanted me to ring a freaking bell at the end and they wanted to know what I was doing to celebrate. All I wanted was to get out of that place as fast as I could.
Now I have a red rash over the top of my breast and chest wall. It is lie five shades darker than my other breast. It hurts is itchy and my radiation oncologist is a man like all of my other doctors and he was not concerned. He actually told me most people don’t get lymphedema when I told him I have it. He finally referred me to a specialist and she is a woman.
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Darlene - I completed radiation last November, but I just want to say I know what you mean about that "exposed" feeling. I absolutely hated it and would even cry over it sometimes; had both male and female techs. I'm just as reluctant to have some women seeing me as I am some men. Lying on your back exposed to all just creates such a vulnerable, humiliating feeling in my book. I've read elsewhere on this site that not all feel the same way. Some seem to think you just do what you have to do, who cares who sees you, etc. I just cannot relate to that attitude, but it is not uncommon.
I did not get the "ring the bell" thing at all either, and I declined to go to my "graduation ceremony". I think they thought there might have been something wrong with me and they kept asking me if I wanted to speak with the social worker and I said no, I just didn't want to have cancer and have to be there for all those treatments.
Your redness should heal up just fine in time. I wound up darker also - much like when I would get bad sunburns as a child. Mine seems to be gradually lightening up, but it is still quite visibly darker. Some areas seem to have lightened up more than others. I just kept putting lotion on the area and things seem to slowly get better. Most recently I have been putting frankincense/boswellia oil on the area and I do think it is making things smoother and lighter yet. Still a long way to go, but it is soothing and improving; makes me feel like I'm doing something positive. Best of luck to you.
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I’ve now completed 7 of my 15 treatments. The tech today thought my skin looks a little darker than the other side but otherwise my skin has been fine. I try to remember to put the cream on every morning and night but I’m hopeless at it! I think it’s made my scars better but they were quite raised and red as I scar badly.
My arm feels like when you’ve banged your elbow and it tingles up your arm. And it is weaker than normal - yesterday lifting heavy pots while cooking was hard work! And I’m tired. More tired then I think I’ve ever been. My sister is now doing the driving and I spend the afternoon on the couch.
I’ve settled in to the routine well with slippers (I felt odd wearing shoes lying down) and an eye mask so the lights don’t bother me. I’ve had several different techs, at least half men, but I’m not worried about who looks at my breasts anymore - I’m quite removed from them now
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Just finished #8 of 15. Skin is just a little red but my shoulder is sore especially my shoulder blade. I have no idea if that is related. I have all female techs and they are so nice. They always ask me if I want a blanket to use until I lay down but I usually decline. My RO is female and so very nice and helpful too. Having caring professional makes this so much better. I have had doctors in the past I did not care for including my first RO 12 years ago. Arrogant and uncaring. Memorial day weekend was wonderful. I was able to go up to my brothers lake house on Lake Erie. It was just so nice to get away from everything. Probably didn't practice social distancing as I should of but it felt so good to try to get back to normal. Hope everything is OK with everyone.
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quinnie- I’m so glad you got to do something that feels normal last weekend. I hope that I’ll be able to visit my dad this weekend. He’s fighting stage iv prostate cancer and I haven’t seen him in months.
Do any of you see your radiologist ever week? What does that appointment look like? I saw mine yesterday and I was surprised that it was super fast and she didn’t even check me. Maybe it was because I’ve only had 4 treatments.
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Yes I see my RO every week. A very short visit and the first time didn't look at my skin. I will see her tomorrow. Mostly asked me if i was OK or if I had any questions. Of course they weigh me and that brings on more stress than the radiation treatment. LOL
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Hello ladies - I just finished 21 of 30 treatments today. I am part of the Mepitel film trial, so have that on half of my breast. The side without the film is much redder, and starting to peel in some places. The underside of my very large DD breast is red, sore and the skin is breaking down a tad. My underarm area is sore, reddish brown and my scar from the SNLB looks even darker. It is hard to lie on the treatment side at night, itching wakes/keeps me up and the fatigue has hit me at this point. I don't love being exposed daily (2 male techs, 2 female techs) My RO is male - and I love him! Let me make you all feel better - I WORK for the health system, and will see all of these people that have seen my exposed boob for (hopefully) many years to come! Soooooooo embarrassing.......
BUT - each day - I try to go in there bright and cheery, sometimes take them treats, and constantly remind myself that each day I am there I AM ALIVE and this could have been so much worse. Some nights I lie awake, sore, red and itchy and get so scared that this effing cancer monster will rear it's ugly head somewhere else in my body. I had the genetic testing almost two weeks ago (waiting for results) because I have crappy family history on both sides. I get on the hamster wheel for half the night - mentally write my obit, plan my funeral and fear all of the what-ifs. Then, I start all the positive self talk and bring myself back to optimism. I have tried to look at those thoughts like a terrible power-point presentation and just 'flip' to the next, positive slide.
So - not sure if that helps those of you that are struggling - but I can say that this is how I have been trying to process. I know more women die of heart disease each year - but when I heard the cancer diagnosis, my world pretty much upended. Just trying to find the silver lining and stay upbeat.
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Hello everyone! Just finished my dry run this afternoon and it's go time tomorrow. They drew the radiation field on me today. I have to say weirdly enough I wasn't expecting the area to be so large. I remember my first time 16 years ago it didn't go up so high and onto my back armpit area...it may have but I don't recall it being so large. Little nervous and I hope for the best that it won't be noticeable down the road like it was on my mastectomy side previously. They did tell me that things have improved treatment wise and I had a lumpectomy this time around so the experience will be different to my skin. I'm ready to get started...
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I’ve had my first SIM with the positioning ordeal. And I want to use the Mepitel Film. I bought it on my own, and then the Techs said I had to put it on myself!! I was thinking, “Are you kidding me? It’s just a piece of freaking tape!” But my RO says it’s new to them and they are afraid of it.
I complained about the up and down, off the table and back on, with repositioning every time. It took three hours. It’s not that they are mean to me but they are just...cold. I don’t want to be there anymore than they want to deal with a 70 year old woman like me! But both breasts are gone now, and I’m just a mass of scars anyway. But it’s still humiliating
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mac5: Sorry you had to go through this. I know the machines are very sensitive and won't work unless you are aligned correctly. My treatments stopped once as I was not in alignment. Hopefully the next session won't be this long. My treatments are 10 minutes if that.
LB13: I wanted to be in a trial but nothing was offered at our facility. I can't complain. I only have redness but some discomfort in my shoulder and shoulder blade. 12 years ago with my first radiation, I had skin issues-redness, peeling, itching but nothing much this time. I only have 6 more to go
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I had my first treatment today and it did not go well, from leaving my house to getting home. witnessed a rear-end at freeway on-ramp, and the hitter drove away (bitch). BF video'd the license plate - but I don't think there's any way to find them. I could not stop. Stressful.
I have Ehlers Danlos Syndrome - hypermobility; it's a collagen/connective tissue disorder and my joints are crap. I refused rads twice before. But I could not tolerate any of the AIs, I tried four. And I've had four recurrences (last one removed 4/13/2020). So it seemed like I had no choice to but to do rads. I mean, we're pretty much out of tissue to cut away.
They've been jerking me around with my appointment schedule, and I was already mildly annoyed about that. I sneezed in the waiting room (in my mask) and no kleenex anywhere). I could not remember how to do the locker, and a lovely patient helped me. I didn't have the card they claimed they gave me at my tattoo appointment (for scanning in to appt). I hurt from being on the table that long.
I got weepy several times on the table. I communed with thoughts of all my loved ones no longer on this earth. They had music on and it was a soundtrack from teens, and it was actually comforting and uplifting. (heard an Elton John song I'd never heard before!). The assistant who said my FMLA papers would be ready was not there (late in the day) and hadn't left them for anyone else to give to me. My pulse was fairly high when they took vitals and that concerned me, but it seemed to not bother them at all. Like my pulse is rarely recorded that high. BP was fine.
I sent my doc one of the studies on mepitel, after discussing with her twice before today. She claimed she didn't get it (and she may not have)(portal is stupid). I didn't feel like I could argue with her. And I was asking her about the marks on my chest. At one point she said, '...something called electrons...' and I had to use every last bit of strength to not scream at her. She had no reason to think that I might not know the word 'electron' for pete's sake.
I really like the clinic and the team. My first consult there - prior to my decision to go with BMX - was amazing. They really went the extra mile (and see the aforementioned EDS - I've been a patient more than 30 years and I used to work at my hospital - I can recognize the extra mile). It's not really any one massive fault - but it's a bunch of aggravation.And I was nauseated all the way home, and after dinner, and I already feel hot and prickly there. If I'm like this at one, I am having trouble imagining 30.
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i'm so sorry tigerbunny that you had to experience this. I know it is not the same for everyone. I just finished #11 and only have pink skin and some itching and overall just some weird feelings in my boob. 12 years ago had the same thing and did not have any lasting problems. It helps to have techs that are nice, understanding and sympathetic.I have one tech that is not. She seems in such a hurry and gets mad if I move. The others are wonderful. PLease keep posting. This site helps me vent and feel the love of others who are going through this.
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Hello ladies,
I've completed 9/25 treatments so far. The irradiated breast looks fine, perhaps a bit pink but I might be imagining things. I use Miaderm/My girls creams during the day and Aquaphor at night. I also brewed green tea and put it in a spray bottle. Several times a day I spray it on the irradiated side. I've asked my RO about it and she kind of laughed at me for doing it. She did say it wouldn't hurt, so I keep doing it.
Is anyone using bolus? I'm using it and have heard that it's making you "burn" faster. A bit concerned about it but haven't seen major issues yet.
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I go for #7 of 28 this morning. So far my skin looks good and maybe slightly pink, but like someone said above, that could be my imagination. The position is uncomfortable for sure. It seems the want my arms in places they don’t naturally go. Kinda hard To hold that position for 12 minutes. I’ve started praying for everyone I love when it starts. I focus on each person individually and it has really seemed to help get my mind off of what’s going on with me.
I do see the doctor once a week and he hasn’t looked at me yet. He just keeps saying “I don’t think you are going to have any problems “ which makes me wonder if they have an easy time picking out people who are going to have problems, or he’s just trying to reassure me?
I am also using green tea and it seems to help cool the area. I also use mioderm and aquaphor.
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I just finished 10 of 16 and had a disturbing experience when I entered the radiation room. Each time, I am asked to identify my patient info and confirm that the picture on the screen is mine (a horrible photo of my face they took while I was laying down). I was greeted today with a photo of my left breast! The photo was taken with my permission last week as we're trying to figure out a weird rash that is probably not related to the radiation.
I was stunned. My initial reaction was to joke with the techs about it - one joked that she had posted it on both her Facebook page and mine. I was actually quite shocked and as I think about it, I'm disturbed at the lack of sensitivity and respect. I'm OK with showing my breasts in an effort to make sure my cancer is forever obliterated. I know other women who suffer every time they are asked to open their gown. No patient should have to identify themself by anything other than their face.
I came home and sent a message to my RO that included the above paragraph. I'm sure she will respond appropriately. The techs were sloppy. All they had to do was to click on the image of my face to enlarge it and the breast photo would have been reduced to a thumbnail. I feel better having sent the message!
The weird rash is on both breasts and prompted an emergency dermatology visit on Friday. The current guess is that it is rosacea. I've had facial rosacea issues for a long time that now are mostly minor. My face is currently very "pink" and the breast rash matched the color so the thought is that the stress of the breasts healing has triggered it. Since I'm already using steroid creams on both breasts, we added oral doxycycline to see if that helps reduce the inflammation. No pain, no itch so I can be patient as long as it doesn't get worse.
I wish everyone a healthy and happy day!
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Today, I completed 24 of 25 whole breast treatments and got the dry run for my boosts, which start on Wednesday. My underarm and 'underboob' are weepy messes, and they offered to give me a break last Friday. I declined, as I just want this all to be over, but it is raw and painful. The Mepitel film seems to be helping the other side. Saw my RO today and he said it will get worse before it gets better, but once it starts to heal, it should heal quickly. We have a pool at our house, but RO said I probably won't be able to go in until at least mid-July. My genetic test results should be in today or tomorrow, and I am on pins and needles with fear. Last night around 2 AM, I woke up, got riddled with fear and had a huge crying spell. My three-month follow up with my surgeon is next Monday. Anyone else just feel like nothing is normal since your diagnosis? It is just all-consuming sometimes.
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CallMeTenacious, that is so insensitive and good for you for letting the RO know. When I went for my mapping last week, I had been forewarned by another lady on here that they would want to take a picture of my face and breast. They asked for the face photo, and I was fine with that. Then as I was lying on the table having marks drawn and so forth the one male tech was hovering over me with the ipad and before I knew what had happened I realized he had used it to take a photo of my breast without asking or even telling me after the fact. I only figured out what had happened because of being pre-warned by someone here. I would have allowed it had they asked but I feel that the way that it was done was disrespectful. I will probably mention something to the RO when I see her next.
LB13, hugs to you. I have been a bit emotional myself lately as I have a 2nd opinion with another MO coming up. Is your genetic test for the cancer gene mutations?
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Thanks @BCat40 - yes, the genetic testing is for all of the cancer gene mutations. I have strong cancer history (many kinds) on both sides of my family. I am an only child, and have no blood children, so no one to pass anything to - but if there is a possibility of this cropping up somewhere else in my body, I am trying to stay in front of it, instead of behind.
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I finished 15 sessions (3 wks) of radiation to left breast (deep breath hold) only last week, but feel a slight irritation in chest as if I was getting a scratchy throat, but it isn't one, ever since the final two sessions.
I don't see this mentioned anywhere as a side effect. Has anyone experienced this? My rad-oncologist didn't think this would be due to the rad, but I don't know what else could have caused this.
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Happyhiker: I did not experience any scratchy throat but when i take a deep breath i feel it near my shoulder blade. My RO also said that is not usually a side effect. Who knows. I have 3 more treatments and I have little blisters on my chest where I have sun damage. Very itchy!!!
Happy hiker: Do you like to hike? I love to hike. 2 years ago my sister and I hiked the AT in the state of Maryland-40 miles in 4 days. I should clarify, we slackpacked!! WE did this through road scholar. This fall we are going to hike the AT in Georgia-70 miles in 7 days. We stay in a wonderful bed and breakfast and are driven to the trail each day. This is through In Good Company. The group is women only and is limited to 12. I really need to get in better shape before I attempt this. Right now if I exercise and sweat my breast burns and itches too much.
LB13: I understand your feelings. My diagnosis is probably the best you can have but I still feel anxious at times and wonder about the future. I found myself crying yesterday off and on. I think we are allowed to have days like this. I don't think this covid thing helps either. When I walk around with my mask on, get my temperature taken all the time, it makes you feel like there is something wrong with you,
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I went for my session this morning and was greeted with a photo of my face instead of my breast. I was also greeted by technicians who were disturbed that I had "emailed everyone" about my breast photo on the screen yesterday. No apology, no remorse on their part, no response to me from my RO or management. I wasted my breath and explained to them that I find the whole radiation process very difficult and while I initially responded by joking that I was actually very disturbed. I added that I really didn't appreciate them talking about their neighborhood pools as I felt like a piece of meat as they positioned me on the table yesterday (which was not included in my email). Still no response. In fact, frosty silence was what I received. I'm angry and focused on finishing my last 5 sessions. If there was any way to request another technician team, I absolutely would.
Is this the biggest lack of respect issue that anyone can face? Certainly not. Did they simply not notice that the breast image popped up on the screen yesterday? Probably. When I saw it and commented, could they have clicked and put my face photo on the screen? Absolutely. Would that have eliminated the issue? Without a doubt. Could they have made me feel OK by simply saying "Sorry"? YES!!
Moving on...
Quinnie and Happy Hiker1 - I have discomfort in the diaphragm area and a sense that breathing is a bit difficult (it's really not) which seem to be related to the positioning and the breath hold as they went away by the end of the weekend. I hope that's what you are experiencing.
To All - There's a lot of emotion in dealing with all of this. I spend my fair share of time wallowing in self-pity, crying randomly, raging (I'm particularly good at that) and being frustrated. I also am really trying to find joy and happiness every day. A friend advised me to allow myself to embrace whatever emotion I was experiencing and to try not to stay in the bad, dark places too long. It makes sense to me.
It's warm and sunny here and time to go for a walk. Wish all y'all a good day!
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Callmetenacious- I can’t believe the techs gave you a hard time! Good grief!
LB13- I hope you get your results soon. I’m really glad I did the genetic testing. I wish I didn’t have a mutation, but since I do, I’m glad I know about it. Like you said, now I can stay in front of it.
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A better conclusion to today's session! I arranged to see the nurse practitioner before my session because I noticed my treated breast was much "pinker" yesterday afternoon. She met me in the hallway and I unloaded on her about how upset I was about the technicians. She was amazingly proactive. In the time it took me to put on a gown (I'm very quick), she had grabbed the supervisor and the technicians were admonished to behave. They only spoke the minimum number of essential words and said nothing as they released me from my position on the table. I said thank you and exited the room. The radiology manager met me at the door and we had a meeting. He assured me that they took my issue seriously and that he had met with the technicians on Monday. I asked if he had advised them to apologize to me and he said he had. I bit my tongue and did not ask why he didn't reach out to me. The end result is that he offered to switch my remaining treatments to the other technician team and magically can do so in my early morning time slot. Whew! I'll take that as my resolution for now. I may re-visit this later as I'm beginning to feel the need to advocate for others who have to go through this process.
Up next is a class on Zoom, Pilates on Zoom and a social event on Zoom this evening. A lot of Zoom!!
Best to all!!!
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