June 2020 radiation group
Comments
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toria1212.....Lots of gentle hugs. I am thinking of you and your family. I hope he is doing better now.
cyathea...Thank you for the video.
I really like the bra recommendations, thank you!
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toria1212... I'm sorry to hear about your son's mental health struggles. It sounds like you're going through a lot at the same time, but you sound like a strong woman... yes, even if you cry. Hugs!
BCat40... I'm glad your pain is finally improving and that you find a bra that you like! I was having bra problems even before the surgery and RT, so I don't think I'll find a comfortable one, but I should not give up hope.
grdngrl505... Sorry your skin is still peeling, hopefully it will get better soon! I've been wearing shirts with sun protection as well. I trust that they work! That's interesting about your schedule. I will post about my schedule in a separate post and I would like your input.
cyathea... The video sounds useful, I would like to watch it, thanks for posting.
cm2020... I'm glad your skin is healing. I will post about my schedule separately.
About me... My skin is the same as two weeks ago (I finished RT on 7/7), but it's not worse, so I guess I can't complain... When I watch TV the breast feels uncomfortable, so I put a little pillow under my armpit and it helps. My energy is coming back, although not today. Still, I managed to go for a walk this morning.
Wishing everybody a good week. xo
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Toria - I'm so sorry about your son. My daughter just got out of residential treatment for her mental health issues, and we have no idea if things will be better. She's 31, so an adult. We are there to be supportive emotionally, but not much else. It's a complete energy drain on our family almost daily - but we love her, so we don't give up on her. Hang in there.
Kris
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OK my pink ladies, here's the story about my schedule. Any opinions/input will be appreciated.
I had told you about this a long time ago, but it has resurfaced in my mind because I still have questions that I never asked. First let me say that my RO is the worst communicator ever. I don't know if she doesn't like to communicate with patients, or if she is used to uninformed patients or what, but she was never straightforward with me. I'm used to discussing things with my doctors because I read extensively about every diagnosis and treatment.
Anyway, I met with her the first time and I'm sure she told me how many sessions of RT I would have, but I don't quite remember what she said. I think she said 20 sessions, 5 per week, 2.66 grays per treatment.
After the simulation appointment, the technicians gave me a printed schedule and it only had 16 appointments. Same thing on the hospital portal. 16.
So I started my RT and once a week I would be seen by a nurse and then by either the RO or her assistant. So on the second one of these appointments, the assistant informed me that I would have 16 sessions of WBRT and "4 or 5 boosts".
The following week, the weekly appointment was with the RO. I asked her about the boosts and she told me about them. I hated the fact that I had to learn about the boosts from her assistant instead of from her directly. She said that the plan had always been 21 sessions, but that the last 5 were boosts. OK, so now at least I found out that it was going to be 5 boosts (everything was like an afterthought to her, at least that was my impression). She also said that there was no question that I needed the boosts, that it was very important that I get them and was very emphatic about it.
Then on Monday morning of the following week (day 15), I wrote to the nurses via the portal, asking why I only had 16 appointments if they were going to be 21. A nurse replied and said that she was going to ask the RO but that I should stop by the nurses' station that afternoon. So I did before the treatment. They put me in a room and then the RO came in and said something like "I was going to talk to you and then you sent that question this morning" or something like that. She said that she planned boosts towards the end of the treatment and that she could not give me the boosts because, looking at my CT scan and my MRI, she could not find the tumor bed and for that reason she could not blindly give me boosts. She said that because of the stereotactic biopsy and the surgery, my breast tissue had changed a lot and that's why the tumor bed could not be found.
So... this is what I wonder about:
1) Is it true that ROs plan the boosts at the end of the treatment?
2) If I had not sent that message that morning, when would they have told me about this change?
3) Had she not looked at the CT scan and the MRI before? I mean, the CT scan is used for the simulation!
4) Why had the staff not blocked 21 days, if according to the RO "it was always 21 days"? Why did they block only 16, as if they knew it was going to be 16 treatments only?
On the other hand, I found this information on my chart (the only information I could find, as they don't share much of your medical history, not even with you, the patient): 4256 cGy/16 frx/1000 cGy boost/total 5256/right breast
I must say that when my RO broke the news to me I was extremely happy to get fewer treatments and less radiation. It's just that my analytical mind is very nagging.
Thank you for reading. xo
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callmegenie....I completely understand your frustrations and concerns. It seems very weird to me....all of it. I know my RO told me that he would know where to focus the boosts based on the clips (think that is what he called them) that my breast surgeon left behind. I asked this question specifically because I had 2 tumors and wanted to know how he was focusing the boosts. I know I had another CT scan and planning appointment about 1 week before I finished the regular radiation sessions. Just pure speculating, but it didn't sound like my RO had spent any time thinking about my boosts (as in he didn't need to look at anything because he knew he would be able to find the clips left behind by my surgeon and was positive i would have boosts) except for making sure the techs scheduled the CT scan/planning appointment. My other pure guess is that it sounds like your RO had no intention of doing boosts and completely forgot she told you about them until you sent the e-mail...meaning you may never have found out. My RO never gave any indication that boosts were questionable, it was certain from the get-go that I would have them. Is it possible for you to have a second opinion with another RO? That is what I would do. I'm sorry I am not more helpful but hopefully this gives you a little more info?
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callmegenie, I never had any clips left behind because I was supposed to be going back for a mastectomy. It ended up not being needed. RO told me she couldn't find specific tumor bed because of no clips, but she was giving me boosts to the entire lumpectomy cavity (this included where small tumor was taken out and large area of LCIS removed). I am not sure if she was able to tell about the lumpectomy cavity because it was all filled up with a seroma and was easier to delineate that way? In any event the boosts ended up being to a large area of my breast instead of just where the tiny tumor was. I was not happy to find that out and I wonder if it contributed to my pain but it's done now. I think that if this is bothering you you should get a second opinion.
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cm2020 and BCat40... Thank you for your input. I think you’re right, I should get a second opinion... I wonder if it’s too late, though... But I could request my records... I’m glad you guys mentioned the clips! Are they still there? The surgeon should know! I wish this hospital would post my records on their portal. It’s very frustrating, ugh... Let me do some thinking. Thanks again
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P.S.
I found the CT scan report and it says “surgical clips are demonstrated within the right breast”.
I forgot that I read the report while I was going through RT. I asked the PA, who said that they would discuss it with me at the one month follow-up appointment. My brain was very foggy those days and I never asked the RO about it. And the one month appointment is with a nurse...
I think I'm going to request a telephone or video appointment with the RO and ask her to discuss my CT scan with me. She should have had the courtesy of discussing it with me a long time ago! The date of such report is the date of the simulation, but it was posted much later.0 -
Darn Were you seeing my radiation oncologist? I had the exact same issue and I asked to change RO 2/3 of the way through, All I could think is "what a bitch".. PS RN here She treated me like I was an idiot. I still haven't written a review
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redhead403... You did? I'm glad you were able to switch doctors. I didn't have a choice because she is the only RO specializing in breast radiation at this hospital. The funny thing is that she was recommended by a friend's friend and by my neighbor.
cm2020, BCat 40, redhead403... I sent a list of questions to her this morning (via the patient portal). All of them regarding the CT scan, so I copied and pasted the sentences and then asked specific questions after each sentence. I said that I wanted the RO to answer the questions herself or to give me a call (I don't want the nurse or the PA to answer them). Once I get those answers, I may go to step 2 which is to get a second opinion at a different hospital, even if it's to hear that I didn't go through radiation for nothing. Meaning that even without the boosts it will help lower my risk of recurrence.
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callmegenie...I'm really glad you contacted your RO and specified for her to answer your questions. Please let us know when you hear from her. I am hoping you get good solid answers. If not, please get a second opinion. If nothing else you need the reassurance about the decisions that were made (without explanation to you). You mentioned you wondered if it was too late for boosts, while I don't know the answer, I do know that you have nothing to lose by seeking a second opinion. I am thinking of you.
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cm2020... Thank you for your caring message. I'll keep you all posted.
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callmegenie-I really never received much info at all from my RO, other than 20 appointments, 4 boosts. That's it. Interesting when you mention if doc is accustomed to "uninformed patients' or that they make assumptions about us, the patients, but I am feeling less and less enchanted by this whole bc journey I've been on. I hope you get satisfying information. I never even asked if my clip was still in there(is it supposed to be?)
wahoomama87-I am so sorry about your adult daughter. I sometimes wonder if the stress of my son's struggles will kill me one day. And I hate his father for abandoning him(and me) in this process. It's very difficult.
I am healing and peeling(under arm) but things are much calmer. I am going braless as much as possible and I "pat" gold bond powder in lieu of anti-perspirant for now. I am still using calendula, aloe and vit e oil daily.
I am crying, a lot. I meant a LOT. I don't know if it's depression or simply a release. Yesterday, I met the new oncologist-he was very nice, BUT he said to me, "Your 5 by 5 by 4 mm area contained about 500 million cancer cells". I take notes during all Dr appointments and I was overwhelmed. He is pushing for an AI after I already said I was going to use supplements and nutritional avenues for wellness. He said, "Well, since you are refusing treatment, do you want to keep seeing me?" I was(in my head) thinking, "HOW will I get mammogram follow-ups? Bloodwork? Etc Etc. I am much more upset about my stage 1, grade 1, low chance of recurrence bc than I ever was pre-surgery. I guess I was too naive and now realize that this f*ing disease can kill me no matter what I do. I'm sorry, ladies, but I am not in a good place in my head.
I hope you are all healing , and those still receiving radiation are hanging in there. My thoughts and prayers are with each of you daily. xx
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toria1212...
About the clip(s), yes, they are usually there, although sometimes they're gone, like BCat40 mentioned...
About not having an MO, the same happened to me. I refused Arimidex (the MO himself told me that the absolute benefit was really small, plus I had already taken Tamoxifen). Because he doesn't have to oversee my treatment, he asked me if I wanted to see him on a regular basis or as needed or not at all, and I said "as needed". So the mammograms and breast exams will be performed by the surgeon and by the RO (they will take turns every three months and then every six months). I suppose it will be the same for you but you should ask.
I'm sorry you're crying so much, but maybe it is a good thing? Just releasing tensions and emotions? Can they refer you to the local American Cancer Society or similar? They have mental health counselors, for free. I got referred to one before my surgery. She helped me a lot.
xo
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toria, the first MO I was assigned to made me cry. She implied that if I did not shut down my ovaries and do AI on top I would develop bone Mets. I had stage 1, 8mm cancer. I switched MOs to someone else at same hospital with a less pushy approach. I agreed to try a different drug that doesn't involve ovarian suppression but if it doesn't agree with me I will be stopping and taking my chances. One MO I talked to said 8mm is considered a “small disease load". So yeah there are billions of cells but that's because cells are so darn tiny and the vast majority of any that might break off don't survive. That's why approx 90% of stage 1 cancer patients never have a recurrence. Also my BS is in charge of my future check ups and imaging orders. You don't need an MO for that. Do you have future check up with BS or RO who can do that for you?
callmegenie, your radiation definitely did something. A boost is to lower recurrence in a range of percentages (I have seen as low as 3% extra benefit) but most people will not have a recurrence after having the regular radiation dose. Still I think your RO should give you a better explanation0 -
Here's a recent article I found discussing recurrence reduction rates attributable to having a boost: much higher for younger patients. But of course also increased negative side effects.
“In younger patients, the addition of a boost translated into a significantly higher absolute risk reduction in comparison to older patient groups (1). For patients ≤ 40 and 41–50 years of age, the absolute reduction in risk of local recurrence was 11.6 and 5.9%, as compared to 2.9 and 3.0% for patients 51–60 and >60 years of age, respectively."
https://www.frontiersin.org/articles/10.3389/fonc.2020.00772/full0 -
BCat40... Thank you for the link and for the input. I had read about that the day the RO told me no boosts. I guess that's why I put it to rest, until I started thinking about it again, lol. Thanks for reminding me about this! (I'm in the 51-60 group, so the benefit of boosts is not so great). I feel better, thanks again! The RO has not replied yet... Take care xo
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NP, callmegenie. I’m 40 and my age was the main reason my RO said I needed to do boosts. For the other age groups they should really put those 3% stats out there and let women decide. I feel like they just do it for everyone unless there’s some sort of complicating factor like you had. It also ups the longer term risks of fibrosis and pain.
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toria1212...Massive hugs to you. I have no additional advice (you have gotten some great wisdom here already), but just want you to know I am thinking of you and also concerned about you.
callmegenie...We're in the same age bracket! I hope you hear from the RO soon. I am thinking of you....lots of hugs.
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callmegenie…, I hope your RO is able to provide you some clarification. It's frustrating to have a doctor who is unresponsive. I'm in the same age group as you and cm2020, too.
toria1212 and BCat40, my MO wanted me to do ovarian suppression and AI also and I'm a lot older than BCat. I'm in the process of switching to a new MO because I'm perimenopausal and my ovaries will shut down on their own soon enough. My BS schedules my follow up imaging and appts, too. My MO ordered biomarker testing that was unnecessary and is currently only used for metastatic BC. I didn't have a good feeling about her.
BCat40, not related to radiation, but I found this article that showed that ovarian suppression also isn't as effective if you don't have chemo.
Among women who did not receive chemotherapy after surgery, the recurrence rate with tamoxifen alone was so low—95 percent of women remained free from breast cancer after five years of tamoxifen treatment—that no benefit of ovarian suppression has been seen, according to researchers.
http://med.stanford.edu/content/dam/sm/cancer/docu...
It's from 2014, but it still gave me piece of mind that I was making the right decision about ovarian suppression since I don't need chemo.
Keeping everyone in my thoughts!
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cm2020 and grdngrl505... It's nice to know that we are in the same age group! No answer from the RO yet... Hugs to both of you!
I feel blessed to have this group of wonderful, smart women, thank you for your support. Thinking of all of you.
XO
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grdn girl, thanks for that article. I had read a lot about the SOFT trial but not that particular nugget of info. I wonder if it’s because patients who didn’t have chemo had lower risk cancers or less advanced cancers to begin with?
I also agree about tumor markers. I think they are just money making tests and cause undue stress. Not suggested by my MO but my mother’s MO does them (mom is 5 yrs out from stage 1 IDC) and I keep telling my mom not to bother.
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BCat40...My MO doesn't do tumor markers either. She said they cause a lot of undue anxiety and aren't very reliable.
callmegenie....I really hope you have heard from your RO by now. It has certainly been long enough (unless she is off) that she should have responded by now.
toria1212....How are you doing?
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cm2020... Nope. No answer yet. Not on the portal, not a phone call. I may contact them tomorrow, see if they say she's off. If she's not off and I don't get an answer tomorrow, that will be my sign to switch ROs (which would mean to switch hospitals and groups). Thanks for asking! How are you feeling?
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callmegenie....Oh you are exactly right, if she is at work, and hasn't answered you, then you got a clear sign it is time to ditch her. I hate that it will be so much work for you though. But if she can't answer your questions and be up front with you, then you really do need to change. This is your life you are fighting for and she works for you. You deserve clear answers from your dr (we all do). I feel good. I am struggling with getting back to my healthy WFPB eating and it is discouraging. I am desperately trying to lose weight and not succeeding (due to the struggle to get back to my healthy eating) which is also discouraging. But radiation-wise, I feel good. Breast pain is decreasing, skin is healing, and the fatigue seems to be gone as well. Thank you for asking. How are you feeling?
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cm2020... I've been looking at ROs online. The problem is: If I ditch her, can I keep the surgeon? Could I see an RO at a different hospital and the surgeon at this hospital? I don't like this situation at all. I should have called today to find out if she's on vacation or not. Funny you mention your diet, I've been thinking of going back to my healthy eating (South Beach Diet) but I just can't. I'm hungry. I ate a lot through this whole BC thing and I'm still very hungry! I eat Cheez-its almost every evening, lol. I'm glad you're feeling fine radiation-wise. It sounds like you're really healing, yay! I feel fine in general, some days I still feel fatigued, but not everyday. The skin is about the same or a little better. Mentally and emotionally I feel better too, thank God. Thank you for asking.
Everyone... Did/do you have foggy brain while on RT? Lately I have realized that I did, and big time! It's something that you realize in hindsight. Like when BCat40 told me about the boosts and the age of the patient. I had read extensively about that during radiation and I didn't remember a thing! I've seen that term (foggy brain) and now I understand.
Hoping everybody is feeling fine today. One day at a time. xo
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Ditto on the brain fog. I feel like I’ve lost a lot of brain power since last year. My memory is not good. My speech is slower and I forget some words so I find myself word searching and then I can usually come up with the right word, but it is a loss of fluency. Concentration and focus are difficult. I am managing, but this is tough. I hope this isn’t permanent
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callmegenie…, my BS works for the imaging center where I go; the RO works for cancer center in the town that I live. I'm going to see a new MO 60 miles away in another city next week at a different cancer center. My BS recommended a different MO at the new cancer ctr, but he's not accepting new patients. She could tell my current MO wasn't a good fit for me. I hope you're able to make the right decision for you regarding your RO.
BCat40, below is some info on tumor markers for your mom and link to an article that it's in.
https://www.npr.org/sections/health-shots/2017/10/...
The blood tests include screenings for tumor markers, which aim to detect relapses before they cause symptoms.
Yet cancer specialists have repeatedly rejected these kinds of expensive blood tests and advanced imaging since 1997.
For survivors of early breast cancer like Reeves – who had no signs of symptoms of relapse — "these tests aren't helpful and can be hurtful," said Dr. Gary Lyman, a breast cancer oncologist and health economist at the Fred Hutchinson Cancer Research Center. Reeves' primary doctor declined to comment.
In 2012, the American Society for Clinical Oncology, the leading medical group for cancer specialists, explicitly told doctors not to order the tumor marker tests and advanced imaging — such as CT, PET and bone scans — for survivors of early-stage breast cancer.
Yet these tests remain common.
Thirty-seven percent of breast cancer survivors underwent screening for tumor markers between 2007 and 2015, according to a study presented in June at the American Society of Clinical Oncology's annual meeting and published in the society's journal online.
cm2020, I fell off the WFPB wagon, too. I had veggie pizza this week with real cheese. I'm trying to do food prep on Sunday, but it's hard getting motivated again to eat healthy.
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cyathea... Yes, you described it perfectly! That’s exactly what I have been experiencing! But it’s getting better.
grdngrl505... Thanks for letting me know that you can see doctors in different groups/hospitals. I hope you’ll like your new MO.
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Everyone... I have this silly fear that my RO might read this board, so I hid most of my diagnoses and treatments (so that she doesn’t recognize me)
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