June 2020 radiation group
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callmegenie.....The brain fog has been horrible! Three of the most dangerous things that happened during the worst of my brain fog: almost getting into a car accident, forgetting to put my glasses on before driving home from the store, and leaving the stove on. It has been awful! It is getting a little better, but I have to constantly write notes or tell my daughter to remind of things. My RO is at a different medical center than my other doctors. I could have seen an RO at the medical center with all my drs, but the drive for radiation would have been much further (my drs are in my city, but radiation would have to be done in a neighboring city). So it really doesn't matter whether they are all in the same medical center or not. My breast surgeon gave me the option of which RO I wanted her to refer me to. Why are you afraid your RO reads this board? That never even occurred to me! I hope my drs don't!
grdngrl505....Ugh, why is it SO darn hard to get back to the healthy eating? I know I need to in order to increase my chances of no relapse, to lose this darn weight, to feel better, and to be healthy........yet.............ugh! I have felt down (not depressed, just down) and sorry for myself and just starting to process this diagnosis and everything it means, and I am such an emotional eater that food is the only thing that seems to (temporarily) make me feel better. But I have to stop it. I am sorry you are having a hard time with it too. Also, pizza sounds heavenly!
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Hi everyone, my RO called me yesterday in the evening and she answered all the questions I sent her (I had a copy so I could write down her answers). I was not satisfied with some of her answers. Unless I'm wrong in thinking that ROs can interpret CT scans (vs. radiologists). For example, the CT results mentioned calcifications. I asked her about them. She was looking at the films (or whatever they are). First she said it was a clip, then that she was not sure, and then that it was the stickers. Again, maybe ROs don't know much about radiology. I'm still thinking of switching... I told my husband about the Q and As and he said I should switch. He has never liked her either. So for now I will go to the one-month follow-up with the nurse. In the meantime, I'll be looking for a new one. I may ask my PCP for a referral.
Today I used deodorant for the first time since I started radiation! I also shaved! Oh the things we take for granted, girls. I felt really good about myself just for that and I wore nice clothes, lol
I'm glad I brought up the brain fog because it seems that several of us have been suffering from it. cm2020 wow, you did get in some dangerous situations because of it! cyathea, I thought it was funny that you would mention the fluency (in language) and because that was driving me crazy as well.
I dared to go to church today (with a mask on and keeping social distance). It was nice, even if things are different now.
cm2020 The reason I'm afraid my RO reads this board is because I've been criticizing her, lol.
Hoping everyone is having a nice weekend. xo
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callmegenie....At this point I think your RO is just not very good. My RO appears to have no trouble reading CT's and certainly read mine (well, I am guessing it was him since he seemed to know all about it) when planning my radiation. Finding another RO is a very smart idea. Please keep us posted. I do understand why you are afraid yours reads here....but you know what? She deserves to read everything you have written about her, she does not seem smart at all. Yes, my brain fog has been nothing short of frightening.
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I’m feeling very discouraged right now. And angry. A lady I know from church just gave me the name of her RO. I looked him up and I can tell I will like him. Do you think I should see him soon? Or wait until November, which is when I’m supposed to see my current RO? I’m beating myself up for not asking this lady before I went to the hospital I chose. I knew she had had BC! I’m feeso blah today
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callmegenie.....Call him tomorrow morning, first thing, and take the very first appointment they can get you! Play the cancer card for all it is worth and sweet talk the scheduling person in the hopes they get you in very very soon. Do not beat yourself up over not checking with this lady first.....crap happens. The only thing you can do now is get a good RO that you can trust. So make the move immediately! No need to wait. Good luck!! I am crossing my fingers, toes, eyes, that you get an appointment super quickly!
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cm2020 Thank you for the encouragement! I’ll call tomorrow!
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Hi, just to give you an update, I contacted another hospital to see if they would review my CT scan results and they told me to mail them a disc, which I’m doing tomorrow. I got another RO name and I’m still deciding.
How’s everyone doing?
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I finally finished rads today! My last 5 were boosts to my mascot my scar area, so my upper chest and armpit got a break. My skin is very raw and tender. I’m so happy to be done. In all honesty rads ended up being harder than I thought it would be.
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ajminn3... Congratulations on finishing rads! Yay! Did you get to ring the bell? Most of us have found ourselves feeling worse after finishing RT, like being exhausted, sad, etc. etc. Hang in there and celebrate this weekend!
For those of you who had lumpectomies: Was your incision around the nipple (areola area)? If so, is it still tender? Mine is tender... Surgery was 2.5 months ago and last radiation treatment was 3 weeks ago.
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Welcome to the completion club, ajminn3. I’m so happy for you.
callmegenie, best of luck with the new RO next week.
I have my 1-month follow-up visit with my RO next week. I’ll have good things to report like reduced soreness, healed open wounds, expected annoying things like peeling skin and increased lymphedema swelling, and general disappointment that the rads to my spine is still giving me pain rather than reducing it (but pain is manageable with Ibuprofen so it’s not the end of the world). I expect that he will basically shrug and tell me to follow up next August, which is SO better than the alternative of needing to see him again due to progression of bone mets.Have a great weekend everyone.
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ajminn3...Congrats on finishing!!! I agree with you completely that radiation was harder than I thought it would be. The emotional/mental toll really got to me.
callmegenie...I'm really glad you are getting a second opinion and looking for another RO. I hope you get a really good one. My lumpectomy scar isn't near my nipple, however, my breast is still super sore/tender. My lumpectomy was April 6. I finished radiation almost 3 weeks ago.
cyathea...I hope you get a good RO report and don't have to see him again for a year. I am sorry you are having some issues though.
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callmegenie…, hope your are able to get clarity on your outstanding questions regarding radiation. I saw a new MO this week and he was so much better than the last one. He outlined all of treatment options and didn't decide ahead of time that I should have ovarian suppression and an AI. I'm glad I switched and was able to decide how I wanted to proceed with endocrine therapy.
ajminn3, so happy for you that you finished your radiation! Woohoo! I found it more difficult than I anticipated, especially towards the last couple of weeks. My skin cooked for a week after my last treatment before it began to heal, but it did turn the corner.
cyathea, I had some sharp shooting pains in my breast during treatment and acupuncture helped a lot. It's kept my pain at bay after my mastectomy and during radiation.
I hope everyone is healing. Tired of moisturizing, but will keep doing it.
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Hi everyone, thanks for the good wishes! I mailed my discs to the hospital where I used to go, in a different state. Because of the pandemic, I was not able to have surgery and radiation there. I don't think I have ever told you this. I had my mammogram and stereotactic biopsy there in February and my surgery was scheduled for April, then the pandemic hit, the surgery was cancelled, and I was thrown into this chaos and confusion. So I'm asking them to review my MRI and CT and I will try to have a virtual appointment with the NP that works with my old MO, because he doesn't do virtual appointments. I'm going to e-mail him directly as well, because that's how we always worked and I'm hoping he will still answer my e-mails.
Question: Has anybody gotten moles around the radiated breast? I have gotten tons of them. I don't know if they are moles or something else. Of course now I'm concerned that they may be skin cancer.
I hope everyone is feeling reasonably well. I'm very tired of applying cream too. In fact, I don't think I have enough left to last me until August 7th (my follow-up appointment with the nurse).
xo
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callmegenie....I am so relieved that you have a solid plan for a second opinion and are able to talk to your old MO. I can "hear" the relief in your writing. To answer your question, no, I haven't gotten any moles at all. You might want to take a picture and send it with your e-mail to your old MO. Also make sure you ask at your appointment the 7th about them. That is really odd. I hope someone else has some insight into what they could be.
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I haven’t developed any new moles, but I definitely have quite a few more freckles where radiation hit. My top layer of skin is starting to peal, which is gross and yet, relieving since the skin is starting to heal a little. It doesn’t feel quite so sensitive under my arm anymkre
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Callmegenie,
I noticed them and at my RO noticed them at my followup and referred me to a cosmetic dermatolo They turned out to be seborrheic keratosis. It is a common noncancerous skin growth. People tend to get more of them as they get older. Seborrheic keratoses are usually brown, black or light tan. The growths look waxy, scaly and slightly raised. They usually appear on the head, neck, chest or back. I was upset after radiation that I had them. The doc used i think nitrogen ? It was cold and that caused them to fall off. I still have faint pink on the areas where they fell off
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cm2020... Taking a photo and sending it to my old MO is a good idea, thanks! And thanks for the caring words!
ajminn3... I’m so glad your skin is starting to heal and that you’re not so sore. Funny that you got more freckles after RT...
redhead403... Thanks for the input. Why after RT? What’s the connection?
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Callmegenie
I am not sure what the connection is.
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Hi everyone, just wanted to say Thank you to everyone on this forum. I learned so much from you all; this helped my confidence and comfort throughout. I had 20 treatments, including 5 boosts, from mid-June to mid-July. I rang the bell at the end! My treatments were easy, people were great, got tired last two weeks of treatment, come home and nap for an hour. Husband always drove me. Tiredness did not go away until 3 weeks after treatment. Skin started peeling, much discomfort underside of breast the last week of treatment. I used the silver white ointment which was wonderful. After treatments were over, I started using cold pack in a dish towel for comfort. Use what what works for you, that's the advice I received from many. Three weeks out I am finding the side of my breast is dark, lightly leathery and peeling, not painful but itchy enough for me to know that the recovery will take a few months. Right now I am using Aquaphor and Eucerin which are working for me. I am in an HMO, and I have been very happy with the coordination of care. RO closed out the radiation treatment, now I go back to MO for one month post rads and 4 months post tamoxifen 5 months post excision. RO, radiation nurses, the techs, all were very clear about calling them if I had any post-treatment concerns or questions. Covid meant that conversations were few, that we stay apart in the waiting room. This forum has been tremendously supportive for me, just reading the experiences. Again, I thank you all and wish you the best for your treatments and your journey.
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ReeaRite... So glad you are done and feeling better. This forum has been very helpful for me too!
About the moles... I'm thinking that it could be that if we have skin tags or whatever and they are light pre-RT, with radiation they burn and turn brown. Just a guess... I will ask the nurse and possibly go see a dermatologist. My new moles are under the radiated breast and a few on the outer part of the breast.
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Hi all, I have not had my radiation yet, but wanted to ask you guys how long after your surgery they started you on the rads? I have my bilateral lumpectomy scheduled for Aug 19. thank you. I am really not looking forward to this, went in wanting double mast to greatly reduce chances of recurrance and to avoid rads, dr talked me into lumpectomy. Am starting to regret that now. What you guys have been thru sounds absolutely dreadful! Why can't modern medicine do better than this?
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arabiansrock... I had my lumpectomy on May 12 and started radiation on June 15, so about a month later. Good luck, take it one day at a time. It's the only way to do this!
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arabiansrock....I wanted a bilateral mastectomy as well but went with a lumpectomy due to the pandemic (I was diagnosed in late March and had my lumpectomy April 6). I STILL regret not getting the mastectomy I wanted and plan to talk to my breast surgeon about it when I see her in October. She was very supportive of whatever I wanted to do, but at the time I was planning surgery everyone was expecting the absolute worse from the pandemic and there were questions as to whether cancer surgeries would be shut down. Having a lumpectomy allowed me to get it and out of the hospital quickly. But, my deep hope is to go back for the mastectomy and reconstruction next year. I say all of this to you to encourage you to follow your gut and have the surgery you want and feel is best for you. As for time frame...my surgery was April 6th and I started radiation June 10th. Good luck to you!
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Arabiansrock -
I am having my BMX on August 24th - COVID has not altered anything for me there. I am not having recon so I won't stay in the hospital overnight. I just met with the RO today and I will see him again on September 14th, but he has not said when I will start. So at least a month or so after. I have one positive lymph node before I started treatment and although I've had a complete chemo response and there is no evidence in the lymph nodes anymore, prevailing wisdom seems to be to zap it anyway a couple of times just to be sure. I'm all about that! So I should just have a short course, but they don't seem to be in any rush to get it on the calendar yet.
Kris
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Arabiansrock,
I was told you should wait at least 6 weeks from surgery to start rads in order to allow your skin to heal from surgery first. If you wait longer, you should start within 8-12 weeks of surgery. I started 9 weeks after surgery.
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Hi, I hope everyone is healing and doing well this week.
I noticed that there's a August radiation forum for anyone who is finishing up or will start soon. Just an FYI....
https://community.breastcancer.org/forum/70/topics...
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grdngrl505 Yeah, I noticed last night. We can be their teachers, lol
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Thanks for all the information. I think I am going to ask RO (when I get to see one) if I can delay the start of radiation until we are in late fall/early winter. My hobby/passion is riding horses, and I want to get to ride my horse for at least a bit this summer! He has had just as rocky a road as I am having. I bought him a year ago, he is 19. Lesson barn sold him because he started spooking. First time my vet did a dental on him, he went thru the roof when vet touched 2 bottom molars. cue xrays, and find 2 infected molars, one of them broken. Cue 5.5 hr dental extraction and 2 months of recovery (the holes are BIG). But my boy felt better. get to ride for 3 months. Horse starts spooking again. go to vet, get more xrays. ALL of his incisors are dead, roots were eaten away by a dental disease. Now he has 12, yes 12 front teeth extracted. Now that was ugly after. but they literally fell out in vets hands. No pulling required. He is still recovering from that but we had our first ride this weekend. Now he feels better and I have surgery in 2 weeks, then 3 weeks off. I want to ride while the weather is nice, and before either one of us has another health crisis!!!
I think he knows something is wrong with me tho, he has been just comiing up to me and just standing next to me. Just hanging out.
Reading these threads about red swollen bleeding weeping boobs, leathery skin, hard boob insides, swollen underarms, stinky bo, has me terrified. I melted down last night and bawled for 2 hours in my daughters arms. I don't want to do rads. These treatment choices suck. Roast your boob until well done like shoe leather (and possible radiation related consequences down the road) or run toxic chemicals/poison thru your veins. Gee, great choices.
Definitely not in a good place right now. Having trouble focusing on work and getting more scared by the minute.
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arabianrocks: I'm sorry your horse has had health issues as well. I totally understand how you feel. I had BC ten years ago and I refused rads. But this time, because it is a recurrence, they told me that they strongly recommended RT. At first I was resisting with all my might, because I was terrified, but this time I felt that I could not say no. So I went through RT. Not fun, but, honestly, I thought it would be worse. My biggest fear is the possible late effects. You need to put things on a balance, weigh the pros and cons, read a lot about your specific BC. There are several different types of BC, and then subtypes or grades, etc. Ask your MO for his opinion. ROs will always want to radiate, just like surgeons will want to "surge" (lol). This is a roller coaster we didn't want to be on, but here we are. And remember, everybody is different. My own RO told me they cannot predict who will have strong side effects and who won't. Maybe you won't! Will your radiation be on both breasts?
P.S. RT can not be delayed beyond 8 weeks after lumpectomy, that's what I have read.
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Ladies...
Thank you all for the information you Post and the helpful suggestions!
Just wanted to check in to say I finally finished 36 RT, the last 8 were Boosts. And I Rang that Bell loudly!!!
I used the Mepitel Film to cover the whole Radiation Field. The only reddened areas were what my RO considered “scatter.” Used to Sivadeen cream for very quick healing. So many Blessings for the idea to ask for the film.
I do have a question. The “boosts” I got were directed to the MX scar. My RO explained the extra radiation was needed because my margins were not clear. When I reminded her the area with no clear margins was my chest wall, not the Breast Skin she had no answer. She only told me that was Protocol for RT after MX. I still feel like I got more RT than I needed to the wrong area. Has this occurred to anyone else or am I paranoid?
The “brain fog” is real! Still continuing two weeks after finishing RT. But I’m glad to be here, even if my brain is fuzzy. ;
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