MARCH 2018 starting RADIATION
Comments
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Thank you all for the positive thoughts and energy. This truly is an amazing group of women.
The rest of last week kinda sucked. After getting the bad news, I heard from no one. Why my MO wouldn't follow up still confuses me. I was told today she was out-of-town and still is, but somehow she was at the tumor panel that reviewed my case. I also had to "manage" my news. It comes with many questions and right now, very few answers. I've also learned the hard way that asking my immediate family to stay quiet until I've had a chance to tell people myself never works. So, preemptive email.
BUT in good news, I now have a Nurse Navigator. And a cancer social worker. And validation on some of my feelings about my former SO/MO/Etc as well as new information on how that onc failed to follow protocols and standards of care. It doesn't change what happened, but hearing that I wasn't nuts and did everything I could, helps.
It looks like I'll be having surgery and then more chemo. Third time's the charm? Triple negative breast cancer is called chemo-sensitive or chemo-receptive because it often fails to respond to other treatments. With zero hormonal involvement, many breast cancer drugs and treatments like hormonal therapy have no effect. TNBC is a hot research topic worldwide. This strange bastard cancer doesn't recognize geography, race, diet, environment, etc. Its survival rate is much lower than other BCs. The biggest risk factor is being a younger woman.
My last rads session was Wednesday. I'm getting really sore in a couple areas that also feel tight - like my skin is too tight. I'm keeping aloe and Aquaphor on them, plus taking Tylenol. No blisters or sores. My skin looks like it's brown with a coat of red painted over the brown. The worst area has what looks like spider veins. Anyone else have something like this? Since my rads ended so abruptly, there was no post-rads skin care info given.
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Hi FelineMum,
Glad you aren't having blisters or sores. The post rads instructions I was given was to continue with the lotions for the next 6 weeks, until my follow up app't. Also, if I did get blisters or open sores not to run water directly on my skin. That's about it, basically the same as I've been doing.
kaywrite,
There's a Hormonal Section and we could start our own thread there. What should we call it?
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FelineMum - our thoughts and prayers will continue to come your way. It just seems like you should catch a break so yes, maybe third time is the charm.
I am now past the halfway point - 15/30 completed. My skin benefits from the weekends off for sure. But right after the first treatment of the week I do get itchy again. And, I've had a lot of the little stinging, shooting pains many of you mention. I try to think of them as healing pains as I did after surgery - figuring my tissue is rebounding from the attack it has been under. Nothing horrible, just a constant reminder that stuff is happening.
Looking forward to finishing this process and maybe by then our weather will improve and so will my mood!
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Veeder, I found a few threads for the drugs used after menopause, but Beesie has recommended some reading this morning re placebo side effects, etc. I can share that with you privately. But to answer your question, I'd like the topic to be something like Post-menopausal hormone therapies experiences.... Not well-said here, but something to that effect....Thoughts
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Kaywrite, I started my treatment with Tamoxifen and it didn't work. So my MO suggested I have my ovaries removed so that I could start on Arimidex (Anastrozole). So in October I had the surgery and started the Arimidex. The worst side effect I had was hot flashes which come with menopause anyway and I was a little fatigued for the first two weeks but other than that I was good. However, everyone is different so hopefully you will fair well like I have so far. My MO took me off of the meds until I finish rads so that the rads can do their job, but I will go back on it after I finish for about the next 8yrs. Arimidex has the least amount of side effects than most and it's mainly bone related. The way I look at it is women have bone loss when they start menopause anyway but at least with the pill it will help prevent the cancer from coming back. I take calcium and D3 to help combat it and my primary doc keeps an eye on my levels. Positive thoughts you're almost there.
Feline, I'm glad you finally got some help and reassurance. Prayers that everything goes well for you.
Flowergal, Congrats on finishing!
Metoo, Yeah half way there!
Yesterday my armpit area was in a lot of pain so saw the RO that was on duty. He told me to get aloe with lidocaine. Boy does it work! I finally had some relief. He also told me to take a non-drowsy antihistamine so I did that to. Between the two I was finally able to get a good night sleep because I wasn't in pain. 4 more whole breast treatments then 5 boosts and I'll be done on the 30th, I can't wait.
Positive thoughts and gentle hugs to all.
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Feline- thank goodness for nurse navigators. Each department (i.e. Breast imaging, surgical oncology, radiation oncology, etc.) has them here, but with a lot of turnover. I go back again and again to the NN in breast imaging. She is wonderful and solves problems/red tape for me often. I saw her yesterday to help with scheduling a MO, finding a new PCP, questions re language on an imaging report. She's gold. I also use a nurse care manager through my insurance co- also so very helpful with coping and insurance barriers.
I wonder if my medical facility has a social worker. I was told yesterday there was a psychiatrist for breast cancer patients here, and was referred to her. But I'm not sure that's what I need (although this stuff can make me crazy). Social worker sounds more appropriate. I'll check.
Take all the emotional support youcan get, my mantra. This is hard. Love and peace.
Thinking of you xox
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Nancy - great info, thank you! Where did you get your research on side effects for Arimidex? I already have osteopenia and take calcium and D supplements, too. So, bone loss, while unwanted, is happening anyway - age. I love hearing you haven't had much in the way of side effects. Sounds hopeful. I'm an active person, exercise, etc, so I'm hoping that works in my favor.
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kaywrite,
I am interested in the info Beesie referred you to, as well as a post menopausal thread.
I have been following a couple threads along that theme. Am "arming" myself for the discussion with the doctor about which drug since I have osteopenia (AI contraindicated especially since the bone loss is greatest in my femur) and macular degeneration from "long" eyeballs (extremely nearsighted) and tamoxifen is known to cause ocular lesions, especially in the macula. Will see my ophthalmologist next week and discuss with him before meeting to discuss which antihormonal. Had a meltdown yesterday over this issue and having to wait once again!
Feline -- prayers for a third time charm. Echoing re post rad skin care...I was told to continue what I was doing for two weeks and then use whatever lotion I want to. I did not have a bad reaction so have backed off on using aquaphor 3 times a day and am using the aloe gel as well as continuing to wear only cotton knit tops.
Wishing everyone a good week. The sun is shining here although we have storms forecast for the weekend so I'll enjoy the sun while I can.☺
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Kaywrite here is the links my MO gave me.
http://www.breastcancer.org/treatment/hormonal/com...
click on the PDF link if you have an ad blocking the last med. That is the list of most frequent side effects.
Here is one just for Arimrdex.
http://www.breastcancer.org/treatment/hormonal/aro...
Hope these help.
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I am so glad I read this board. Today, at 16/30 they said the RO wanted to come in and draw for the boosts even though they are still a ways off. They looked at my incision - and because of what I read here I said - you know that the incision isn't exactly where my tumor bed is right? So the RO says let me go look at the images (after looking at me like I am probably nuts). He came back and said, yes, the area is likely a little wider so maybe he'll do a little more planning and we will draw later. Wow. How do they not start with the images, understand the tumor bed and then come and plan? So very odd! I am sure many surgeons try to put the incision as inconspicuously as possible so you would not think it is uncommon for the tumor bed to maybe be a little off of that area.
I would not have known to speak up and question if not for others experiences so thank you!
On post menopause hormones -I take Letrozole (Femara) started even before my radiation started. Hot flashes seem to be my only impact so far and a little more than what I experienced during actual menopause. I also have osteopenia and take calcium and D and started taking B complex vitamins after reading more about biotin (for hair thinning) and other vitamins. The only SE I worry about is weight gain and bone loss so doing what I can to offset that. My MO said not to ever feel like you don't have options when it comes to the types of hormone therapy. He said if anything causes quality of life issues to come back and talk to him and try something different. So even if your MO doesn't say that you should always know there are options and find what works best for you!
Hope you all have a good week and the healing continues!
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HI Metoo2018,
I'm so glad you spoke up about your the Boost area concerns. My RO did start with the images from the CTscan taken during the simulation and could show me the area on the scan. The day before the Boosts xrays were taken and again I was shown the area to be targeted. I'm pretty sure the RO also used the marker placed during the lumpectomy. I didn't have any concerns about where the Boosts were to be done.
As far as the hormone blockers~I won't be starting until June but I do worry about bone loss as I already have severe osteoporosis. How often do hot flashes hit you? Is it predicted to continue for the entire time your on medication? I was going to ask my MO about treatments to prevent hair thinning/loss. I knew someone who took these meds and just about lost all their hair and needed to get a wig to wear. Short term hair loss is one thing, but for year's on end, yikes.
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I have to say, my RO showed me all the images, my first week of treatment. When they switched me to boosts this week, the techs had a sheet of images they were comparing things to, then the RO came and double checked their work against the images...and they took a picture for future reference. I definitely have confidence in my radiology team!
Four more boosts to go, then back to whole breast for 8 treatments. Though this isn't the end of the world, I'll be so glad when I am done!
Thanks for all the tips everyone.
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Hi, all,
This is about my short experience with anastrozole, which is why I would love to have a group for those of us who are starting hormone therapy. I haven't been able to read all the posts in groups that currently exist. There are just too many! So I have some questions for those of you who are about to start taking any of the aromatase inhibitors (AIs). Bear with me while I explain before I ask my questions.
I started taking anastrozole before radiation began, around the first of March, on the advice of all three oncologists (SO, MO, RO) involved in my care. Since then I've had hot flashes and joint pain.
Prior to my BC diagnosis, I'd already had serious arthritis in my right hip and lumbar spine. I was diagnosed with degenerative disc disease and spinal stenosis eight years ago; my hip is now bone-on-bone. My consult with the orthopedic surgeon was scheduled before my BC diagnosis. When I saw him, he just told me to call him when I was ready to have my hip replacement, well after my cancer treatment is over, since cancer treatment always takes precedence. And I have been diagnosed with both early cataracts and early macular degeneration. As you can tell, the published side effects of anastrozole are a real and pressing concern to me.
On a daily basis I have had back pain and hip pain serious enough to limit my mobility. Since I started taking anastrozole, the pain has increased in my spine. I'm now taking ibuprofen almost every day; some nights the pain keeps me awake. And recently my right knee has begun to ache on a daily basis as well. My hip seems to be about the same.
I've been sticking with anastrozole because my MO said the side effects tend to decrease over time for many women. That's been true for me with the hot flashes, but not so much for the joint pain. Yet it's hard to tease out whether my joints are just getting worse or if the drug is the cause, unless I discontinue taking it.
I will see the MO again in a couple of weeks, which is why I've been keeping a diary of symptoms. One concern I've had about the MO's practice has been his lack of concern for my orthopedic history and the lack of suggested baseline bone scan. Is it typical for an MO who prescribes AIs to order a baseline bone scan? Have any of you had a bone scan in advance of beginning aromatase inhibitor therapy?
If this is inappropriate, I will post to another forum.
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My MO whom I just met with once told me that she would order a bone density test, didn't mention anything about a bone scan.
What about starting a topic on the hormone thread in existence called, "Spring 2018 starting Hormone Blockers" or something like that?
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Veeder - and others starting hormone therapy - my MO said he has seen - in general and with some exception - that the side effects can mirror what your experience was with menopause and I guess I would say for me that has been true but just a few more hot flashes during the day than I had then (I had a very easy and short menopause). He also said you adjust to the medicine and can see a decrease in SE once settling in. I'm just over a month on them and I don't think they've increased or decreased and they probably started within the first week or so. My hot flashes - and they are not as horrible as some people experience - come once or twice during the day but more often at night. They seem to happen as soon as I get changed for my rad treatment - not sure the connection on that one - maybe a stress induced?
My MO is my favorite doctor in this whole experience just because he came into the room - no folder of images, no laptop full of information, and he just talked to me and he had clearly familiarized himself before that with my pathology. Explained things in plain English and drew pictures of what the ER+ receptors are like. Best of all was the first time I didn't have to get undressed. I told him for that reason alone he is now my favorite. My RO is bit distant with little bedside manner. He was on vacation during my planning session and so I think I just missed out on some of the discussion that maybe others have had during the process - though I'm not sure since he doesn't spend a lot of time talking to me weekly when I see him - just asks if I have any questions and leaves. I'm sure we'll get it all figured out and like all of you - just can't wait to move on.
I am not due to see the MO again until mid-June - about 3 months after starting hormones and my surgeon in late May about 3 months after surgery. After that, I really hope nothing until imaging starts again probably in the fall. And I have no doubt that will never feel the same again waiting for those results......
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Marigold,
I can only address orthopedic issues, as hormonal therapy isn't an option for me.
I have degenerative disc disorder, osteoarthritis in both knees, neck curvature and a mild type of spondylosis. I inherited all of these from my mother's side of the family. My mother has all of them plus osteoporosis and some other issues. Before she turned 65, she had a knee replacement. Before that, she had 4 spine fusion surgeries - 3 major and 1 minor. A new hip probably is coming.
I'm not trying to say 'feel bad for my mom.' Her quality of life sucks. She rarely drives because the fusions limit her ability to turn her neck. She has to eat a certain way (food size and amount, angle of neck), and still sometimes chokes. She lives with severe chronic pain and is a shell of who she used to be.
Any doctor who feels your concerns about very real orthopedic issues are irrelevant or unimportant needs to be informed that they are NOT. I noticed early on that oncologists tend to think that non-cancer health problems - literally any problem - is nothing compared to cancer. I've been told that the reasons I'm on SSD are unimportant. Well, they were important enough to end my career and my ability to be financially independent. Etc.
Maybe it's time to call your ortho doc. Or get another ortho specialist on board. If you haven't gotten spine injections before, those may help. I believe there are hip ones too. But if it were me, I'd be asking about things like quality of life and pain management. It's one thing to be alive. It's another to be able to live your life.
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Veeder - I like you name for the hormone therapy group. I say yes. I think the response here pretty much mirrors that. I agree there are so many other threads and info - it's mind-boggling. There seem to be enough of us in this group to support a thread.
Nancy - thank you for the link to the comparison chart. This helps. Everyone should take a look: http://www.breastcancer.org/treatment/hormonal/com...
Beaver - Beesie sent a link to a medscape article that did not work and was re tamoxifen rather than anastrozole-type AIs. But I did search her key words and found this report on the evidence of anastrozole working: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55646...
Here is the publication that link came from, can anyone translate it for us?
: https://www.ncbi.nlm.nih.gov/pubmed/28415634Another link Beesie sent me is below - but the first one opens to a Medscape portal that requires an account. Her comment is in italics below. The second link that should be a pdf won't open for me. It looks like it is in Mexico?
RCT: Menopause Symptoms Mistaken for Tamoxifen Side Effects
This is the most significant study done on Tamox and women with DCIS. It's not specific to post-menopausal women, but on page 6, you can see the side effects, with a side by side comparison of those who took a placebo vs. those who took Tamoxifen (I don't think the link works but try googling those words; you want the PDF of the full report):
metoo and marigold - thank you for sharing your hormone therapy experience.
The side effects of each AI (for both post and peri-menopausal) are listed in the chart in the link Nancy sent (above). None of these SEs are fun, but certainly some of them seem to have fewer than others. I do not know what makes a MO prescribe one over the other for us post-menopausal ladies.
I do not have an appt with an MO until May 2, so will arm myself with some of the questions we are beginning to ask here. Besides side effects, I also need to know what my insurance company will cover IN WRITING since they've changed their minds on covering the lab they sent me to for genetics testing. (The joy of an appeal....)
My last boost is tomorrow. Yeah!!! I saw a social worker at the hospital today (thanks for the suggestion Feline), who was appalled at some of the red tape that's going on - she took a copy of my notes. I had to start noting times and dates of phone calls and appointments and what people said back in January because it was so much, and so contradictory at times. She will use this to help train the departments - so perhaps things will be better for others in the future. I hope so.
I'm leaving the hospital now - will check in tomorrow. Love and peace everyone!!!!!!!
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ok I just started a new topic, "Spring 2018 Starting Hormone Blockers" over on the Hormonal Therapy -Before, During, and After Thread.
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Yesterday after wearing a cotton sports bra for about 4 hours, I noticed my skin being very red. I think the cotton of the bra was rubbing the skin. It's redder than it has been this whole time since starting the radiation. It's the underneath portion and part of the area where the boosts probably were done.
I put on Miaderm last night by this morning it wasn't that red, however now it's real red again. Since it seems to react to the Miaderm I'm guessing it's not an infection. Could the underneath part where the boosts were done be causing this 9 days after I completed them? Anybody have this happen?
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Veeder,
I was told what is going on with your skin this week is a result of your radiation treatment a week or two ago, thus the instructions I received to continue all skin care for two weeks after the last treatment. I'm five days out, still have sensitive areas and am not yet comfortable in a bra. Wore one to church Sunday and had what looked like the start of a rash which went away with aquaphor. So, my short answer would be that yes some thing like that happened to me.
Thanks for starting the new Spring 2018 thread. I'll be posting there as I get my many questions answered over the next couple of weeks.
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Well I'm starting my boosts on Friday instead of next week. My RO wants to give my underarm a break seeing that the skin is peeling and then I'll finish the whole breast after my boosts. So tomorrow after I get all the X-rays done we will go over my boost plan. So far my RO has been great with everything and I'm thankful she is giving me a few days to get my skin issue under control.
I will say this, the aloe gel w/ lidocaine is working wonders to keep my pain at a minimum.
Kaywrite, One more to go for you right? Congrats!
Hope everyone is doing as well as they can.
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At the end of last week I started to itch pretty badly - the itch and the pain have been waking me in the middle of the night. The hydrocortisone and the Jeans Cream were not doing much of anything to touch it. Today one of the technicians said it looked like my skin was starting to break down. Yikes! I saw my oncologist and she prescribed Silvadene. I am praying my skin doesn't open.
Today I also had my planning session for my boosts which were supposed to start in about a week and a half. After the planning session, my oncologist said she was making a change to my plan. She wants to give my skin a rest, so she gave me tomorrow off and will start the boosts on Friday. Instead of just 5 boosts, she is going to do 8. Then once those are finished she will do 3 more whole-breast treatments. I'm a little freaked about skipping a day, but she says at this point since I am so far into the treatments (more than 5 weeks in) that skipping a day will be fine.
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Hi, everyone,
I meant to say bone density scan yesterday, not bone scan. I've had both over the years; they're obviously different tests. Just not thinking clearly, I guess, when I wrote my post.
My MO has not mentioned having a bone density scan. Maybe he will when I see him next. If not, I plan to ask.
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Veeder--Yes, I like "Spring 2018 starting Hormone Blockers" as a name for a group. I went seeking information yesterday and the Arimidex group has over 15,000 posts, which was quite intimidating.
Thanks for starting the new group!
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operamom1:
I had several days off between my whole breast radiation and my boosts. The RO decided to replan on a Thursday, before my treatment, which I didn't get. We did not resume treatment until the following Tuesday. The break did my skin some good and the RO said it should not make a difference in the outcome for me. Hope it's the same for you.
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Wanted to mention to everyone that my RO told me that my "skin would get worse before it got better" once radiation was over. He was right. His last comment to me was that I'd be feeling a lot better--skin and fatigue--when I saw him two weeks after radiation had been completed.
The area of my boosts continues to get worse in terms of symptoms--itching and pain, for example--but the area under my breast, which was always the worst, hasn't improved yet. Still doing skin care as directed and it does help with discomfort.
Just as an added complication, I've developed some sort of respiratory infection. Seems like a bad cold, but I'm concerned about lung impacts since I also have asthma. Should this infection get worse, I'm not even sure which doctor to call...oncologist (which one?), internist, pulmonologist?!?
This is an aspect of cancer care that frustrates me.
When my daughter had leukemia, her pediatric hematologist was the point-of-contact, period. Anything that happened, from a fever to a fall would be reported through their office. With adult cancer, there's so much specialization, the patient really has no clue. When I was diagnosed by a general surgeon, I asked, "Who will coordinate my care?" and got a blank stare in return. Our medical center does not have nurse navigators. They have 'navigators' who are mainly schedulers. That's not the kind of navigation I want or need.
Just venting here. But really, adult cancer could use some of the same coordinated care I experienced with my daughter. On the day of her diagnosis, I received a binder with most of my basic questions already answered: When to call; who to call; what to expect in clinic and hospital; how to understand blood work; how to keep track of expenses, including pockets for your bills and numbers for the business offices; maps of all relevant places; available support groups and when they met; lists of everyone in the practice, with phone numbers, including dietician, social worker...etc. I didn't read it all on the first day, but I had it when I wanted it, and a social worker handed it to me and explained what it was for so I'd know where to look when I was ready. But that was in a highly specialized pediatric cancer care center in a major city. Never got much of that where I'm being treated; the RO's office was better (they handed out a folder with skin care info, fatigue info, and nutrition tips) but the MO gave me nothing to take away. Maybe having an introductory folder is something I should recommend to my MO. Sad part is--he's not necessarily the first oncologist you see when you have breast cancer; you could, as I did, encounter the surgeon first. Talking to the surgeon was an entirely different experience. And I never did get an answer on who would coordinate my care so taking away an empty folder wouldn't help.
Sorry for the long venting. Maybe I can make a difference for the next newly diagnosed person in that clinic by making a few suggestions anyway.
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Your welcome Marigold 8. Same thing with me, there was no coordinator for my care. It was just going from one specialist to another. The frustrating part was that for each specialist I was considered a new patient and had to go through the new patient referral office, although I was a cancer center patient. Lots of hassles with this.
Beaverntx,
I was told the same thing about my skin. But this area is so red I just wonder about it. In a couple of weeks when I go in for my ultra sound of my arm pit, I plan on stopping by the Radiation dept to see if the RO can look at my skin, if the red area is not fading. I hope it is by then.
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Marigold - not sure if it makes sense but check with your Insurance Company too - mine has a case management team and can assign a case worker who not only is great for giving information, answering questions etc. They reached out to me after I was initially diagnosed. I didn't even know they existed. Had I needed it they offered all kinds of services and if nothing else was a source of exactly the kind of questions you have. The case manager is a nurse and just has a lot of resources available to her and ultimately to me.
I know health insurance in this country is a nightmare these days and not everyone is fortunate enough to have a good company who seems to have the patients interest at heart. Once again, I am fortunate in that regard.
It seems so unfair to have to navigate all of this nonsense on your own. I did ask my breast surgeon whether I just go back to my OB/GYN at this point and she said no, she will coordinate all ongoing imaging and monitoring for the next 2 years or so. I felt better knowing that. If I had a better RO and started having anything in the chest area -pain, coughs or anything else I would start there. Every week when I meet with the nurse and RO the nurse always asks those specific questions.
Good luck and I hope you feel better soon.
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I just rang the bell.
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Kaywrite, WTG Isn't it a good feeling?? Now , keep healing and taking care of yourself.
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