MARCH 2018 starting RADIATION
Comments
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Feline - I like what metoo2019 has to say, above - I have two friends with metastatic cancers (breast and brain) who are living happy lives managed by hormone therapies - one is a man (the brain met). I think about them and their lives when I worry about what might happen with my own. But that's letting the cart get before the horse in your case (and mine). If this were my news I'd be wildly disappointed and shocked - so I'm going to assume you've had some similar feelings, especially considering the year you've had. I know I'm not the only one to say: we are here to support you in your anxiety, your treatments, and your decisions. Please let us know what happens.
Boost 1 of 5 today - I got to see the clips, but am still mystified by the .02mm anterior margin. The RO and all the therapists were there to review the films with me, and I could see the area of radiation and know it made sense to them, but over and over when I ask where is that .02mm piece of skin, they don' t know - they say the SO didn't know either, only that it was on the skin side of the tissue they removed. They explained the tissue is sliced into 32nds and looked at under a microscope - that of the 1.5 cm sample, the .02mm positive margin was somewhere near the skin. So - that explains their overall boost area, which includes the nipple and scar. I just thought they (meaning the SO, the pathologists, the RO, etc.) would know specifically where that margin was, due to the "ink," the "clips," and the "trail" they tell me they've left. Since the SO said it was in the upper-outer quadrant, I'd think they'd point there, but I get that they need to include the nipple and the scar. For piece of mind, I am going to send the SO a note via patient portal to look at the films the RO is using and assure the margin he was talking about is included - he'd the one who SAW where there was no more tissue to take, WHERE it was.
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Feline - I am so, so sorry to hear your news. I really hope the PET scan gives you the good news you deserve. I'll be praying for you. For the news, for the strength and the hope that you need to get you through the next few weeks and months.
Paco - Nevada huh? :-) I don't know exactly what kind of shape I have. I have a definite line from my arm pit to my collarbone and the rest is just all red. My nipple is starting to get discolored though. I have a light spot (or maybe a big dark spot with one normal spot!) on it now. So weird. I haven't seen a single bill yet from the RO's office. Maybe my husband is picking them up, but I think we just haven't been billed yet.
Marigold - I might be getting boosts next week and then they will finish the last 8 regular treatments after that. I'll find out for sure on Monday when they see how my skin looks. I'll be excited to give my boob a little bit of a rest if they do, but the doctor said it is a *little* better to finish the regulars first! You have a lot of stuff you are using. They just gave me a prescription for the Silvedene cream this morning and I'm hoping it soothes things a bit.
metoo - I never thought of corn starch. Maybe after I heal the open wounds a bit more I'll try that! The doctor suggested using baking soda if soap hurts to clean under there. it seems like that would be painful, but he said it would neutralize since it's a base and our skin is acidic. I don't really itch, it just stings.
Kay - I have no experience with boost yet really. But the gal who develops the treatment plans came in on Thursday to look as they were setting me up for my regular treatment. Since they are thinking about maybe doing my boosts next week, she was checking out my irritation. She used a penlight to highlight for the tech where the boost would be and it was definitely not my whole breast. It was a much smaller circle around where my lumpectomy scar is. My MO's office called maybe two weeks ago to set up an appointment for right after radiation ends. I don't know if that's typical or if it's just because I'm starting tamoxifen next and she's the person in charge of that. My sister-in-law who was diagnosed after me had the same sort of issue come up with the genetic testing. They have a letter expressly stating it would be covered by insurance and then got billed - I think for being out of network. So they are going through that fight too.
Veeder - I can't imagine not having a point person and not being referred to an MO right away. That's crazy!! How frustrating that all must be. Maybe it's because I'm in a small system that focuses purely on cancer and not in a big hospital, but I think the group (which has about 6 clinics across our metro area) works so well together. At my clinic, I even have a nurse navigator who is totally wonderful. So if I ever had a question about what to do or who to see or what was next, I call her and she gets it figured out for me. I'm really grateful for the care I've received. I'm glad you are healing a bit, but I'm a little bummed to hear that it doesn't heal as fast as I had hoped!
Beavertnx - Congrats on finishing!!
20/33 down. I am hoping the Silvedene cream will provide some topical relief for my open are under my breast. Still searching for a camisole that will give me some support without trying to suffocate me. LOL The RO offered me a pain pill today and I was surprised. I said I definitely didn't need one. I just wanted some topical relief! Hopefully, I'll get that this weekend. On Monday, they will decide if they should do boosts or regular. He sounds like he'd prefer to do regular - said that it was a *little* better to finish those before the boosts, but he's not totally against it and my skin may not cooperate. We'll see. Weather is not going to be good tonight or tomorrow. Then it will still be cold next week. :-( I'd love to have good weather stay around, but on the upside, I can keep wearing baggy sweatshirts and stuff that cover up the fact that I'm not wearing a bra! :-)
Happy weekend everyone!
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kaywrite--On those clips and radiation techs:
Not everyone who is part of the treatment team looks at all your imaging. Every time I've asked questions of the radiation therapists, they refer me to the RO. This website explains who does what. https://www.radiologyinfo.org/en/info.cfm?pg=profe...
It took me a while to realize that, in my case at least, the therapists were working from the RO's plan; they did not do analysis of my imaging but were responsible for setting up the machines and making sure the plans were followed.
I had to work with the RO to view my imaging (MRI, CT, etc.) and see the clips on my imaging for myself.
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Congratulations, Beaverntx! Has to feel great to be done.
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FelineMum--So sorry you are going through this! It has to be tough to think you're near the end and then find out you could need more tests and medical interventions. Will be keeping you in my prayers that your PET scan brings you good news.
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Dlpaquette--I'm retired and I'm exhausted. I've been taking naps almost every day for a couple of weeks and going to bed early, too. If you're working, commuting, and getting radiation, it's no wonder you're tired. My RO said that should gradually improve once the treatments are over.
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OK, everyone, I'm done! 20/20 (16 whole breast with 4 boosts) completed this morning. They gave me a certificate, rolled out a carpet for me to walk down, and all the staff stood on either side of the carpet, clapping with plastic "hands" gadgets. It was fun.
Follow up in two weeks with the RO.
Now to take care of my skin, which is still rashy, red, itchy, burning, and waking me two or three times in the night. By the time of my next appointment, I should be much improved, they tell me.
Already seeing a MO and taking Arimidex, which is my next challenge.
Have a great weekend, all! I think we'll be celebrating...and napping.
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Congratulations Marigold! What a wonderful feeling. Just home from 14/30. A ways still to go but even hitting the half way mark will feel like an accomplishment.
Reading everyone else's experience with boosts etc I am definitely going to want them to go over that carefully with my RO when the time comes. My scar is right around my nipple because they could reach both sites they were removing - one was cancer and one wasn't but the scar isn't where the tumor was so I will want to be sure they are targeting the right area. As with all of you - I want all the right treatments and the most benefit possible of having gone through all of this.
Definitely ready for 2 days of no appointments. Have a good weekend everyone and will be thinking of you all.
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Cogratulations Marigold8! They really had a celebration for you.
What you posted about the RO developing and approving the plans, and the therapists setting up the machines is exactly what happened in my case. The RO showed me the images from the CTScans and Xrays along with the assigned resident or fellow. The therapists took the xrays but had to wait for the doctor to approve that's why it took so long on the table on xray days.
Everybody enjoy their weekend and time off.
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kaywrite,I asked the therapist today about the boosts and she said they would take more "pictures" on Monday, which is day 14 (why not day 15? Didn't think to ask until just now) to prepare for the boost plan. I asked where the boost area was and she said "the scar", which is a crescent shape around the areola. Why there? Like you said, metoo2018 , my scar was the opening the surgeon made to the get to the tumor site but that wasn't where the tumor was. It was way in the back near the chest wall. So I might ask, how did I get a dirty anterior margin at the skin by the nipple? The entire tumor at it's widest extent was only 1.4 cm...??? Ugh, so many questions!
Felinemum: stay strong. You are going through my worst nightmare right now - the waiting, wondering and agonizing. I wish you the best news for your testing outcomes. Meantime I'll be sending you positive vibes from Buffalo.
Beavertnx, congrats on finishing up. Now get outta here! Go relax and don't think about radiation for a while!
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Paco,
The xrays for my boosts were done on Friday and the boosts began on Monday. I was glad to have this done on a Friday so I had the weekend to recover from being on that table so long. I think the RO wanted to review it ahead of time. The boosts were directed at the scar on the outside, and also from the other side. It's weird but the other side is more pinkish than around the scar. If the scar wasn't were your tumor was then I'd want clarification also.
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Happy Friday the 13th! I hope it's been a good day for everyone. It's been fine over here. I went to Marshall's after my first boost and bought a few dresses, so - my reward.BOOSTS: 1 of 5 down. Yeah! Attaching an updated drawing of what's happening on my chest, which, with the addition of the boost markers, now resembles a game of Hangman. I am having an online conversation with my SO about the margin, which he confirms only as somewhere within the lumpectomy cavity, all of which is being irradiated. <sigh> He's great, and patient, so I sent another note stating I didn't feel like I was communicatingwhat I wanted to know well. I tried again with this: If my lumpectomy cavity were a circle covered in skin, where, from your point of view, would that .02mm dot of dirty margin be - to the side, in the middle? We will see what he says.
Paco - we are sharing this experience cosmically somehow - the questions! The non-answers! LOL Mine was only 1.5 all added up after two lumpectomies. Ugh!
Marigold - yeah!!! And, yep on who views the scans, etc. The RO, had to bring them up with the techs in the room today. And the SO, when he replied, said he did not have access to their scans. Hm. Still, he did say they would cover the entire lumpectomy cavity, and I clearly on the scan with the RO how far outside that cavity they were going with boosts - far enough. I just want to know where that darned margin is.
Petey - thank you for sharing that, it's always good to be reminded I'm not the only one getting the runaround from insurance, schedulers, et al. All in all, it's going pretty well. I can tell how tense I am by how I react to these incidents - sometimes well, sometimes not.
Have a great weekend everyone. Love and peace.
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Congratulations to everyone who has finished!
My thoughts and prayers to those who are struggling!
Today was 20/35 for me. I'm glad to be more than half-way through. My skin issues came on gradually. Last week it really started to get quite red and itchy. The doctor prescribed hydrocortisone cream, but it doesn't really help that much. She tried to assure me that everything looks normal. Since yesterday, my skin has gotten a little blotchy and bumpy. I'm hoping the weekend off gives it a little rest.
I hope you all have a really good weekend!
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Hi Everyone, Just chiming in to let you know I found something that really helps with the itching and stinging. It's corn starch. My skin went from bad to worse last week. I was miserable. The RO looked at it and immediately wrote an rx for Silverdene. The Silverdene helped, but it increased the stinging. The RO said we'll resume treatment (boosts) next week to give me time to heal. Yesterday I searched the boards here on BCO and found a group of women from Europe who were exchanging ideas on how to relieve the stinging and itching from rads. Several of their doctors told them to stop everything except Aloe Vera. After gently applying Aloe Vera on clean skin in the radiated area, then sprinkle corn starch on the entire area and gently pat it around. I tried it last night and it worked immediately. SUCH A RELIEF! This morning when I woke up, it was almost healed. I only had a tiny sensation of itching. I highly recommend it, and hope this helps those of you who might experience severe stinging, itching and raw areas.
Feline, I'm keeping you in my prayers. Please keep us posted. Waiting for test results is so hard especially if something suspicious has been spotted.
Meg
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Hi Everyone, Just chiming in to let you know I found something that really helps with the itching and stinging. It's corn starch. My skin went from bad to worse last week. I was miserable. The RO looked at it and immediately wrote an rx for Silverdene. The Silverdene helped, but it increased the stinging. The RO said we'll resume treatment (boosts) next week to give me time to heal. Yesterday I searched the boards here on BCO and found a group of women from Europe who were exchanging ideas on how to relieve the stinging and itching from rads. Several of their doctors told them to stop everything except Aloe Vera. After gently applying Aloe Vera on clean skin in the radiated area, then sprinkle corn starch on the entire area and gently pat it around. I tried it last night and it worked immediately. SUCH A RELIEF! This morning when I woke up, it was almost healed. I only had a tiny sensation of itching. I highly recommend it, and hope this helps those of you who might experience severe stinging, itching and raw areas.
Feline, I'm keeping you in my prayers. Please keep us posted. Waiting for test results is so hard especially if something suspicious has been spotted.
Meg
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Meg
My RO recommended dusting the cornstarch first, waiting 5 or so minutes and then applying aloe or aquaphor or whatever lotion/ointment you are using. Worked well for me. Hope this helps.
A word of caution-- dust lightly so you don't end up with flakes of greasy cornstarch!
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It's been over a week since I've been here and I was happily reading all your posts over my morning coffee until I got to Felinemum. Damn! I'm so sorry. What should have been an end of radiation celebration has turned into a nasty reminder of cancer's potency. I too have triple negative and know our risk of recurrence is a bit higher in the first five years. Please know that you'll be in my daily prayers particularly that your PET scan does not show distant mets. I love what you said about keeping the quality in your life and I appreciate what the others said about living long despite recurrence. Why not you? We're all rallying behind you!
I completed my 28th radiation on Thursday and got to ring the bell. I went straight to my car and wept like a baby. Up till now it's been one foot behind the other and now there is a sense of relief that my chemo, surgery with complications, and radiation are finally behind me. My skin is red, peeling, and raw especially under the armpit. I'll be picking up silvadene creme today which has an antibiotic in it to prevent infection. I've been advised that Silvadene can be drying and to add a moisturizer over it. According to the RO and PS my skin will need to heal about six months before I can have my final exchange surgery. I will see my MO every six months for followup. While I'm happy to be almost done Felinemum has reminded me that the risk of recurrence will require constant vigilance.
As I've read through the posts I can hear the anger, fear, and frustration in many of your posts mostly as it relates to a lack of information. I used to be in the medical field (a long time ago) and can attest to doctors and nurses being really busy... (but then who isn't these days!?) I'm not saying its an excuse to give fly by medical care but genuine time constraints, complicated patients, and emergencies do interfere. Though there are some jerks out there, I think that most medical providers are happy to explain things or answer questions if you let them know your emotion (most of the time it's fear) or that you simply need to understand what is happening. A resounding theme in this thread is being an advocate of our own care and it's a great idea to remember that we can use our voices to get what we need. I'm thrilled to be on this path with all of you.
Much love.
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Beaver - Just letting you know I decided to try dusting with cornstarch first, then applying aloe. It worked great. Thank you for the suggestion.
DoubleBloom - In six months you'll have healthy skin and perky new boobies. Enjoy!
Meg
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Thanks Meg! Six months will be here before I know it!
I forgot to mention that my radiation burns have made the left side of my neck red from my collar bone to my jaw. Three of my friends have commented that it looks like a hickey! Since when do women in their 50s sport hickeys!!!
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Hi everyone, 11 more to go as of Monday.
Feline, I'm so sorry to hear about your news. You will be in my prayers in hopes that rads kept it from getting worse.
Congrats to Beaverntx, Marigold, and Kathy for finishing rads! Hope you heal quickly.
Veeder, You will be in my prayers too. Hope everything turns out ok.
Here I was going to complain about my underarm skin but after reading some of the posts I feel terrible. It puts things into perspective that someone always has it worse than you do.
Hope everyone else is doing as well as they can be.
Positive thoughts and gentle hugs.
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Lumpectomy and rads girls: I had this epiphany today that is probably old news, but news I have not seen - how to keep your sore, radiated, lumpectomied boob stationary and moisturized. I wear small men's Hanes tees at night, but did not know what to wear when out during the day without a grease spot. Then, duh, breastfeeding pads. Skinny Girl smoother and shaper + pads + calendula ointment = just right.
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Has anyone had pain from radiation not related to redness. I have had pain in the upper chest and although I do have some redness this area looks better than other areas and the pain feels deeper than a skin issue. It is not horrible but had been a few days with no improvement. I am not even sure if it is radiation related.
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Hi Dlpaquette,
The pain I've had is breast bone, ribs, area near armpit, and below the collarbone. Pretty sure all that pain was from being on the hard table. Armpit area is still painful,not sure if it's related to the suspected enlarged lymph node, the seroma, or scar tissue pulling.
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I've had some pain from time to time, not bad at all but definitely within breast tissue, not skin. Sometimes there's a vague ache for a few minutes, and other times a mild stabbing pain. Yeah, it's not all about skin issues I guess. My skin fared quite well.
Good luck this week, ladies!
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I'm a little different then most of you as I'm not having radiation to the breast, I have spinal mets, two skull spots and a spot in my cerebellum, so I'm getting radiation in different spots. I have three treatments left! So far the worst part has been indigestion and there is a spot in my esopohogus that is burned. I can feel it when I swallow and it hurts (not stopping me from eating though ha!) They gave me some mouth wash with malox in it and that helps for about 2 seconds.
Anyway, so glad to almost be done with this part!
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Dang Peaches, I'm so very sorry to see you here in our group. After nearly 10 years, a person gets comfortable and feels like they are in the clear. I'm glad your active radiation treatment is almost done, it is so uncomfortable. Best of luck to you, I'm rooting for you.
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Hi BigPeaches,
So glad to hear that your almost finished. I know you've had a rough time of it.
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Yes, Dipaquette, I've had pain during and after radiation.
Apart from the various types of skin discomfort, I've been awakened by shooting and stabbing pains in my treated breast. (It feels a bit like I'm having multiple injections into my breast repeatedly and simultaneously. Since I've had multiple lidocaine injections prior to biopsy, I remember how that felt.) Ibuprofen usually calms those pains and I'm able to return to sleep. When I'm riding or driving in a car and the road is rough, since I'm not wearing a bra, there's quite a lot of movement of my breast, which can be very uncomfortable. I've literally had to hold my breast against my chest in one position under those conditions. Sometimes I can just be sitting somewhere and get a series of stabbing pains that seem to calm themselves down after a few minutes.
Overall, I've been assuming that the sensations I've had are related to tissue injury and repair from treatment, so I did not report any of these symptoms to the RO so far. But I've been keeping a symptom diary so I can when I see him in my follow-up.
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Hello everyone,
I rang the bell today! and even got a little certificate( like I needed a reminder I was done! LOL)
Dapoquette- i have also had pains similar to what you and Veeder described in the last few days after boosts started. :occasional stabbing like the pains which I had right after surgery and was told this was a very common complaint post op due to all the nerves that had to be cut and the nerve endings were "waking up" to let me know they were still there! . I also have quite a bit of soreness underarm which is uncomfortable but not enough to take pain med for, although I am using nsaids 3x day for an unrelated shoulder issue so maybe it would be worse if I wasn't taking those. I have used 100% pure alo vera gel the whole time and no bra since the second week, but still had some rash and little blister like blemishes, redness,swelling and warm to touch but nothing worse and am told all the above are expected and normal. I am assuming all of this will get better soon!
Feline- Like everyone else, I do hope you will have treatment options and am sending all my positive vibes your way!!
Congrats to Marigold, DB, and Kathy if I haven't already said so.
I see the M.O.Thursday and expect to be prescribed anastrezole . I am concerned about the effects on bones as I have osteopenia, but from what I have read, it is the first tx of choice for my situation.So I will definitely give it a go , keep up with my exercise, eats lots of calcium rich foods and hope for the best.
This forum has been SO helpful to me and I thank everyone who is a part of it.
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March ladies going on to POST MENOPAUSAL hormone therapy - is there a group for this? I'd love to hear what ladies with some hormone blocker experience have to say. (I also sent a private message to Beesie, who seems to know so much about what is posted where.
Congratulations flowergal xoxox
Big hugs, BigPeaches. I looked in the stage 4/mets reporting thread where people simply introduce themselves and their diagnosis, and it's both sobering to see so many wonderful ladies, and awesome to read how they are living with their cancer. So many therapies.
I am three days away from ringing the bell. Very stiff between left breast and arm from rads snuck up on me, so lots of stretching and naproxen.
Love and peace.
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