Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hi Dani444 -
My OBGYN prescribed my Estradiol Cream, and still does. I have, for many years now, used 1/2 g three times a week, which is the usual prescription. It's super expensive, by the way. It's a proprietary formula, and a knock-off version didn't work for me. The cheaper formula I tried was too watery, reactive and stingy on my tissue. My MO approves, although this is not true for all MO's. The question that's out there is whether it's safe to be adding back estrogen, of course. My MO says that the dosage I use is safe, and that it's not systemically absorbed, just local. I use a small amount of the dose around vulva, urethra, rectum and then the rest /most inside my vagina---all mucous membrane tissue. I've heard that Estrace is also available as suppositories, and as a time-release medicated (cervical fitted) ring. I prefer the cream, since I can put it on other tissue.
Coconut oil: Supermarket type, cheap, or order online---very non-reactive with skin. Kind of greasy. Works well as a daily lubricant, inside and out. My OBGYN friend says that many of her patients find this helpful even without Estradiol cream.
This thread is full of people's experience about maintaining sexual health during cancer treatment:
https://community.breastcancer.org/forum/150/topics/69566?page=140#idx_4173
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Hi everyone - Just wanted to pass this newest research onto you all, in case some of you don't follow the Breaking Research News from Breastcancer.org thread.
This applies to women younger than 50 that had borderline Oncotype scores (11-25) and chose to forgo Chemo based on the results. Totally makes me feel more confident in my own decision. Might do the same for others. Pass along the word.
Impact of clinical risk category on prognosis and prediction of chemotherapy benefit in early breast cancer (EBC) by age and the 21-gene recurrence score (RS) in TAILORx.
"Abstract: TAILORx established that endocrine therapy (ET) alone is non-inferior to adjuvant chemotherapy (CT) plus ET in EBC and a 21-gene RS of 11-25, with some benefit if ≤50 years (y) with RS 16-25 (PMID: 29860917). We evaluated whether clinical risk (tumor size & histologic grade) provides additional prognostic information to RS, a secondary trial objective. Methods: Clinical risk by was assessed by Adjuvant! (version 8.0) using MINDACT criteria (PMID 27557300), defined as low clinical risk (LCR - tumor ≤3 cm and low grade, <2 cm and intermediate grade, or ≤1 cm and high grade) or high clinical risk (HCR -not meeting LCR criteria). Results: Of 9427 women with RS and clinical risk information, 70% were LCR and 30% HCR, with comparable distribution by age ( ≤50 vs. >50). The RS was 26-100 in 9% of LCR and 27% of HCR patients, with similar distributions by age. Although LCR/HCR provided additional prognostic information in each RS category for iDFS, including RS 0-10 (9-year rates 86.7% vs. 75.7% LCR vs. HCR), 11-25 (85.4% vs. 78.9%), and 26-100 (82.0% vs. 70.4%), iDFS rates were similar irrespective of CT (no vs. yes) in the entire RS 11-25 cohort whether LCR (85.8% vs. 85.1%) or HCR (79.8% vs. 77.9%). DRFI rates were also similar irrespective of CT in the RS 11-25 cohort or > 50y group whether LCR (96.0% vs. 96.1% overall; 96.5% vs. 96.0% > 50y) or HCR (92.3% vs. 89.9% overall; 91.7% vs. 90.7% >50y). For women ≤50y, the absolute reduction in distant recurrence from CT with a RS of 16-20 (N=923) was -0.2% (standard error [SE]±2.1%) for LCR vs. 6.5%(SE±4.9%) for HCR (vs. 1.6%[SE±1.9%] overall), whereas for a RS 21-25 (N=492) it was 6.4% (SE±4.9%) for LCR vs. 8.6% (SE±6.2%) for HCR (vs. 6.5%[SE±3.7%] overall). Conclusions: Clinical risk stratification provides additional prognostic information to the 21-gene RS, but not prediction of CT benefit in the overall TAILORx population or those > 50y, and facilitates more refined estimates of absolute CT benefit for women ≤50y with a RS 16-25. (Funded by National Cancer Institute, Komen Foundation, Breast Cancer Research Foundation). Clinical trial information: NCT00310180."
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Hi all-
I just read the article "start here" because I've been dealing with everything else with Breast Cancer. I go to the MO July 1 to learn and/or start hormone therapy. My last day of radiation (hip hip hooray!) is July 8.
Is there any medication you would avoid? highly recommend? I don't know if I even have a choice. They're treating me as triple negative, yet I have just enough (10%) of estrogen indicators to treat my breast cancer with hormone therapy. I just wish I could decline it all, but probably shouldn't.
Your advice is very much welcomed!!0 -
emily I am a big proponent of AIs but for such a low ER percentage I’d definitely want to hear the numbers—the probability of recurrence with and without it. I’ve tolerated anastrozole pretty well but also believe the lack of estrogen affects pretty much everything in your body. As to which AI, I asked my MO why they start with anastrozole and she said that’s the one they hear about the fewest side effects with. If you do go on it, I’d give myself a break after rads (I started my AI a month later) and consider starting at a lower dose. A bunch of us did every other day for a few weeks and we seem to be tolerating it well.
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I made the decision to give AI a try. I start anastrozole today. Scared of SE. Up to this point at 68 I've had no meds.
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Hi giggs, emily and all,
I never took much for medications either. I did take HRT for years which probably had a lot to do with getting me into this cancer mess. Now I take letrozole, zoloft, calcium, vitamin D and need a Zometa infusion twice a year for bone loss. I already had some bone loss but decided to go with an AI anyway. I figured the bone loss would have to be treated anyway, regardless of what I took for hormone therapy. I decided to go with an AI over tamoxifen for the best hope for preventing cancer. I declined chemo due mostly to my age and not wanting to be sick, but since then I read (somewhere) that ILC doesn't respond as well to chemo as other BC. I am not sure how accurate that is but it made me feel better about the decision I made. I find letrozole tolerable and except for a lot of fatigue (which MO says I can lessen with more exercise) I am doing well with it. IN FACT, this week I had my 6 month mammogram on just the left side and it is fine. Such relief! I will see my BS next week and want to ask why no ultrasound and why not the right side since ILC is multifocal and contralateral. In the meantime, I'm good.
Thinking of all of you...I hope everyone has a peaceful, happy weekend.
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WOOOHOOO! Congrats LPLibraryGirl on the clear Mammo! Yay! <does happy dance for you>
It's curious about the one sided scan as well. Good idea to follow up about why that was done that way.
My last scan happened that way too, but there was a reason for it, as one more prior to the scan I had a scare with my R breast. My MO ordered a R breast Mammo/US to figure out what was going on. IF that had not have happened, I was scheduled to have a Mammo for both breasts.
Hope you can get to the bottom of the mystery. Let us know what you find out.
Good luck Gigs! Kudos to you for picking up that pill and giving it a shot. I sure hope SEs will be minimal to none for you. Never know, some women handle it like a walk in the park. May that be you! Keep us posted.
EmilyIsMe -- > Welcome to the thread. Sorry you find yourself here at BCO, but truly this site is such a wonderful place, I'd be lost without it. Hope you will find it to be the same for you too. Good luck with finishing up RADs. That can be a tiring road, in and of itself, let alone knowing there is more to come afterwards. I'm not sure what advice I can offer, as your case is very different than mine, but in general I have found that introducing a new med all by itself, without other factors or meds changing at the same time is very HELPFUL in knowing what is causing what.
Also, in regards to the 10% ES, has your MO told you what your actual benefit for endocrine therapy would be? Meaning, what the numbers are in so far as actual risk reduction? Example, a person that has 5% RR/METs, to my understanding would receive a 2-2.5% reduction with the addition of hormonal therapy, bringing their risk down to 2.5-3% overall. Whereas a person with a 30% RR/METs, would receive a 12-15% reduction, bringing their risk down to 15-18% overall. (I think that's accurate, if not someone pls correct me
) IMO it's very important to get those individual numbers when deciding on treatment and trying to live through whatever SEs come down the road. For the person with the 30% original risk the cost/risk is probably worth the SEs (if toleraable) vs the person with the 5% risk may not want to battle through the SEs if they are intolerable for the small reduction overall.
There's actually a good convo going on in this thread right now about Risk Reduction, granted it started with a brief discussion about Osteoprosis in an 80 yr old member, but the informative posts that follow may interest you or others.
And I'm not sure if it would be helpful for you or not, but just in case it would, here is a link to a Calling all TNs, since you said that they are treating your cancer as a Triple Negative. Maybe they might be able to offer more advice as well.
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Had my 6 month follow-up with the RO this week. Found myself wondering what purpose it served in addition to the quarterly visits with BS and/or MO. He said he would see me again in a year. And again I wondered why? Does anyone have thoughts on their RO follow-ups?0
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Hmm IDK FindingOptiimism. I haven't seen my RO since my last follow up a few weeks after RADS finished. I was discharged as far as my paperwork said. I had no further instructions to follow up with her. I'll be curious to see what others say.
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Got the results from my DEXA scan today. Apparently all is normal, which is a relief given my lower scores 10 years ago in my 30s. I was dreading hearing the news about Osteopenia or the like, since my mom has had it for over 20 year, plus both my parents have broken hips in their lifetime.
Anyway, with that being clear, Lupron injections start on Tuesday for OS + AI therapy. I'm awful nervous. Given the awful SEs I expeirenced on Tamoxifen I really hope I have better luck this route and keep some type of QOL going. Send me luck yall.
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FindingOptimism, I go for my 6 mo with the RO in a couple weeks. His PA told me that will likely be my last appt with them. I will still have every 6 mos with BS (always coupled with mammos) for 2 years, then I’m assuming it goes back to yearly
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Hi Spoonie77,
Congratulations on a normal DEXA Scan. Good luck with your injections and Al meds, I hope you don't have bad side effects.
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Finding—I’m doing it a little differently. My BS said I was welcome to keep seeing her periodically or I could cut her loose. I didn’t see the point in going back given that I’m being followed by my MO and RO. I had a six-month post-rads appt with my RO in April but won’t go back for a year. I just finished Herceptin in May and have a six-month follow-up with my MO in November. I honestly don’t know if it will be every six or twelve months after that. I think because I didn’t have a MO in 2016 with my DCIS, it’s my RO who orders my mammos. I already have her order for one in April 2020. I believe she said I’d be her patient for five years
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Spoonie- yay for a good DEXA scan. I hope you sail through the OS and AI with no SE’s! Do you start them together? Sending all the good luck and good vibes your way!
FindingOptimism- I had a 1 mo follow up skin check with the nurses, then 3 month follow up with the RO. He said he would see me in a year and wants me to have a chest CT at that time. I have definitely seen my PS more than anyone! My BS orders my mammo.
LPLlibrarygirl- awesome news on the mammo! I am curious what their answer was to your questions I would wonder why only one side as well. Also we know ILC can hide In imaging so an US would make sense!
Giggs- I hope things are going well on the AI. wishing you NO SE’s :
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My RO didn't even want to schedule a routine follow up with me. He said he'd be very happy to see me if I had any concerns though, and was always very responsive over email. So I felt comfortable with that.
I keep going to my BS and her NP. They're supposed to be managing my follow up imaging and doing manual exams. I'm comfortable with that since it's their speciality.
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Finding I saw my RO after 3 months and since he works closely with my MO he said as long as I don't need anything he will see me in a year. I think part of it is that radiation keeps working for a year and things can still crop up after that. I'm seeing my MO every 3 months for the first year and my BS was 2 weeks, 3 months and 6 months at which time I'll have my first Mammogram. PS was 2 weeks, 1 month, 3 months and 6 month. Yes I see them all and imagine this will be the case for the next year or two. And to that list that I've had several PT appointments due to radiation tightening the muscles in my chest and under my arm.
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Thanks everyone for the well wishes on this new "journey". Yeah, it's quite the relief to know my DEXA is clear. Dani - The lupron starts next week week and then in September when I go in for my 3rd round, they will test my hormones to make sure I'm fully suppressed and then start me on the Arimidex. If the first month of Lupron goes well, I may ask my MO if there would be any harm to starting the Arim earlier than Sept. We shall see.
I think it's interesting that many of us have such varying types of follow-ups with our ROs and BS/SOs. Perhaps if my SO hadnt' taken over my care, my RO would've? IDK. I do know I follow up with my Surgical Oncologist for the next 3 years, every 6 months. Just saw her in May. My RO did say if I needed anything I could contact her or come see her. I see my MO every 3 months while we are trying to figure out my treatment & what works for me. She's the one that orders my 6 month 3D Mammos & then the alternating Breast MRI the following 6 months due to my young age and dense breasts. That will be the imaging plan for the next years as well. I'll see her at least for the next 10 years I'm guessing.
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Hello Everyone,
The conversations about follow-up appointments have been interesting. I had a 6 month follow-up with the PA who works with my RO. That was my last check in with radiology. I will continue to have 6 month check-ins with my MO for the next 5 years. (I read that lobular cancer is more likely to return in 6-10 years, not 1-5, so I think that is interesting.) I just saw my BS for a 6 month check and will see him again in another 6 months when I have another mammogram, both sides. It will be once a year after that. I did ask him why my recent mammo was just for the left side. He said that it was based on statistics and standard protocol. And he said that was why I wasn't scheduled for an ultrasound or MRI. He said more testing sometimes clouds the issue and that unless something is found on the regular mammo they didn't do additional screening. He reminded me that it was a regular mammogram that detected the original cancer. I forgot to ask if insurance/Medicare had anything to do with this protocol!
Giggs, I hope your first week on AI went well.
Spoonie, good news on the DEXA scan! And continued good wishes for the next steps.
Dani, and others...are you still having a lot of fatigue? I keep hearing that I just need to exercise more. Gardening and chores don't count! I think I might be starting to sleep a little better but I am still tired all the time.
Take Care.
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RE: follow-ups
My immediate family includes several nurses and a doctor. They all wanted me to ask my MO why my follow-ups don't include screenings on a regular basis, to catch Metastases before symptoms arise. After my chemo was finished, my MO taught me what to watch for as far as Mets' symptoms (liver=jaundice, brain= headache, bone= pain that worsens over several weeks, lung = coughing worsening, etc.), which was SO HORRIFYING that I paid attention, but wanted not to.... Screaming in the exam room during this conversation seemed a bit inappropriate. Good thing I have a lot of practice now with Silent Screaming.
So, when I brought up "why not regular other screenings, like MRI and CT and US?" with my (super-excellent, famously The Best and Ultra Compassionate, kind, good-communicator) MO, his answer was as others above on this thread have noted. False positives just wind everyone up and adversely affect mental health, and there are lots of those if we start doing a bunch of extra screening. In fact, symptoms of Mets show up about when they'd be caught on those scans, he said, so the scans don't keep us ahead of this game.
is what I thought about that.... And, he went on, standard-of-care protocols have best-outcome statistics attached for life expectancy, so we're doing what research shows to have the best benefit, and also longest life-extension, etc. After saying all that, he said, "Any time you're worried about anything, any symptom, anything you think is wrong or needs to be checked out, call and come in and we'll check it out, thoroughly." He even added, "My practice has a Low Threshold for ordering scans!" As in, ask, and we'll probably say yes. So, he wasn't dismissing my anxiety, and he wasn't saying that we'll never do a scan, but he was saying that we've completed the best TX for my DX, and that we've done all we can do at this point, so now we're in this time period where there's nothing active to do that is actually shown to have benefit. Yes, the patient will have terror and worry, and we don't really have a great solution for that, he more or less told me. Hang in there and come and see me if something arises that worries you. Go live your life. HA ha, SO much easier said than done, I think to myself, as I glance over my shoulder but pretend that I'm not doing that.....
Sigh. This all seems very reasonable, and the doctor and nurse people in my family agree, based on evidence-based-medicine standards of care. That being said, "standard of care" is based on large populations. Anyone can be an outlier, and we still have to advocate loudly when a treatment's side effects are unbearable, when our fear is overwhelming, or if a symptom is worrisome.
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Spoonie77: I had radiation in May 2017. In October 2017 I had SEVERE pain in my right ribs. Stabbing pain. Went to the RO and she said it was "referred pain" from my breast (breast was still swollen, hot and very sore at that time). I argued with her and said it wasn't the same type of pain. My breast was soreness, this was stabbing. Couldn't take a deep breath, and every time I moved the pain was excruciating. She did NOTHING. Fast forward to 2019. I had a CT scan for my kidney. In the report, it said SEVERAL HEALED BROKEN RIBS!! WHAT???? I had done nothing to break several ribs and have had several CT scans and x-rays over the years that showed nothing. Then I did some research about rib problems post radiation and guess what??? Yep!! Chondritis and broken ribs are COMMON!! I was beyond livid. One woman had several ribs break spontaneously (confirmed by x-rays) and 6 months later was bending over to tie her shoes and another one snapped (she felt it break). So if they haven't already, please demand an x-ray or CT scan and give you a diagnosis. I am also on Anastrozole and am considering going off it. I feel like I'm 100 yrs old and my hair is falling out. I am depressed. I am taking CBD which helps me sleep and helps with the joint pain but not the tiredness, depression and thinning hair. Please keep us posted.
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HikingLady: Makes no sense, does it?? They talk to you about protocols when you are worried sick??? HRMPH!!
My surgeon was great. My RO's were terrible. They sounded like robots, repeating what they were trained to say. Where's the compassion? The empathy about what you are feeling? One of my RO's actually said to me after I expressed concerns... have you considered joining our support group? I didn't need support, I needed her advice and help. My first RO actually referred me back to the surgeon's office when all the skin fell off my breast after radiation!! The Nurse Practitioner in the surgeon's office asked me why I was referred back to them! She met with me and called the RO in to see me and I bet read him the riot act out in the hallway!! I'm one that does not conform to their "standards of care" -- most women don't have severe side effects from radiation. I did. Most women can take AI's. I'm not sure I can. I was given lisinopril for blood pressure that most people can take. I couldn't. So protocols smotocols! They can put their protocols where the sun don't shine as far as I'm concerned. I haven't been through what you have been through but I totally understand where you're coming from. Hugs! 0 -
HikingLady -- SILENT SCREAMING, YESSS! I am familar with the term...very!
I'm in agreement with y'all ladies about how protocols smotocols can be stuck where the sun don't shine! I know not everyone is the same in how the deal with stress, but for me, I worry if I don't know and worry less if I do know. So for me, never having had a PET scan ordered and having lived with migraines (3-5 a month) and awful bone pain for years, plus all the other symptoms I had PRE BC, it's beyond beyond beyond anxiety land to wonder with each occurrence "Is this METs? Is this going to get worse? WHY WHY WHY WON'T SOMEONE SCREEEEEEEN ME?????!" Whew. Yeah, so I feel ya sisters. It's a rough road. All we can do is our best every day and try try try try very very very haard to not look over our shoulders to see if cancer is there.
I will say that even though drs have differing opinions on scanning and research doesn't show it extends survival, there is something to be said for peace of mind AND the importance of at least having a dr that will listen to you, support you, and say "I understand.". Case in point, HIkingLady's MO sounds like a great example there. So glad you have him on your side in this journey HL.
My new MO is much like yours I think. Which I'm beyond thankful for, since my prior MO...a nightmare experience.....had this to tell me during our 3rd appointment where I was declining Tamoxifen due to my Spoonie Life, had questions, concerns, and anxiety about METs and so on. It's from my own thread, "Any Early 40's Declining Tamoxifen?" page 3:
"[the conversation] went like this....
"How am I supposed to know if I have symptoms of metasis/distant recurrence since I ALREADY have symptoms that would be signs of such every single day throughout my body?". She said that it would increase and not decrease over two or three weeks. I told her that would be a problem then since sometimes my symptoms flare for a month or more and then decrease. Sometimes just for a few days. It all changes. Plus I have a history of MRI abnormalities, white-matter lesions, lymph nodes enlarged near my spine, poly-arthrical degenerative disease, diminished bone density, benign calcifications in my jaw, nodules in my right lung, a barky cough that comes and comes over the last 2 years, trouble breathing, fevers on a daily/weekly basis, and C4 plus TGF Beta labs that have been off the charts elevated for years (like in range is around 3,000...some of mine have been in the 32K range!), and CD57 levels that don't even register on their scale they are so low (range is at least >60 cells and/or 1-4%, mine are <5 cells and <1%) and have been that way for the past 10 years no matter what I try to beef them up.
So you can see, or at least most people I'd think would see, that there is history here to take into account.
After that, she reluctantly agreed to order a bone scan for me to get a baseline. I think more to get me to shut up than because she believed me. IDK. Just my impression. I have that tomorrow, so should know results next week I'm guessing.
She said there was NO way she would EVER order a PET scan for me. EVER. Unless I have specific symptoms, which I don't according to her at this time, so therefore no PET SCAN. In general, she stated she doesn't do them and thinks they do more harm then good.
I understand her reasoning for probably 95% of patients, meaning that you end up chasing rabbits, increasing costs, and mental anguish all to come up with "nothing" or benign results, which is great news but at a cost.
But what about that 10%, especially in younger women (according to study 1 & study 2 ) that end up being upstaged by PET Scans finding distant metastasis that did not show up in the lymph nodes, etc or have symptoms that are masked by other conditions or masked in screening by dense breasts?
She didn't want to hear it. And that's when "IT" happened....
When she said (and I quote)
"What?! Do YOU want to FIND Stage IV?! What then?!"
in reply to my questions about PET Scans....I was taken aback. Tremendously.
My response to her was that I would rather know than not know.
She said "Why? What would you do with the information since you don't want any treatment?".
Again, shocked. I replied, "Well, if I knew I had Stage IV that's very different than Stage I or II. I would agree to any treatments that would help since I had further evidence of disease."
Anyway, that whole part of the conversation was really abrupt, shocking, and disturbing. It's going to linger with me for a long time.
We went on to talk about other topics ---
She had no clue about many of the studies I've been reading. Especially ones about alternative treatments like DIM or concerning the latest studies on Tamoxifen gel. Which to me seems like she should be aware of but she said she'd actually never ever heard of it. Ok, not everyone probably reads tons of studies. But then she said she doesn't pay attention to any trials or studies in general until they are approved by the FDA, third arm studies. Which I get, yet, it seemed she would not even look at the logic and information presented in studies involving small mammals and such. That the evidence that's there doesn't matter. I could be wrong but that was my impression.
She did agree with me on one study that shows women with personal history of BC & dense breasts should have alternating breast MRI's and Mammos. So going forward I'll have a BMRI 6 months after my surgery date (Feb) and then in Aug I'll have a Mammo. Rinse and repeat for the next 3 years. AFter that she said I could go down to a mammo every year. I am going to push for a 3D one maybe or every other year add a BMRI in there with the mammo. IDK. But I feel good about this agreement her and I reached.
Well, there is lots more I could post, but need to sleep, will finish up tomorrow when I get home. Bone scan early in the morning. At least there was some progress but mainly this just showed me that I need to search out someone who is more like me, wanting to branch out where reasonable, ensuring all my conditions are taken into account, and to be open to listening on both sides. Thanks for reading anyone and everyone....maybe this all might help someone else someday. Guess that's why I write all down and send it into the Interwebs instead of just processing it on my own."
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Anyway, that was my experience that taught me very siccintly that not everyone is cut out to be my MO and went on to find my new one whom I'm trust and like very much. So, please anyone reading this that feels unheard by their MO, if you are able to pls go for a 2nd opinion and get a fresh set of eyes on your case. We will be dealing with this MO for most, if not all of our lives, if we can't trust them and they don't respect us, it's just not going to be a fun time down that road, for many reasons. ANyway, that's my 2 cents. Getting off my "Be Your Own BEst Advocate" soapbox now.
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Oh and I forgot to mention in my post earlier --- how has decision making been for you all in the rest of your every day lives since this journey of cancer in general? I find I really really really struggle to make choices or put them off or it just feels like "too much" these days. Obviously, I'm not talking about what to have for dinner or the like, but sometimes even having too many options for a tv show or a movie seems overwhelming and hard for me to tackle. I never used to be this way. I find it confusing and a bit concerning.
Maybe my depression is worsening or my PTSD is changing. I wish I could ask my counselor but 2 weeks ago I was summarily kicked from mental health care and permanently blocked from any further care at any other of their clinics because my disability symptoms kept me from making it to three of my appointments in the past year. I made it to 15 of the 18 total though. Guess that doesn't matter. That is their "policy" and I'm fighting it as I believe it's a direct violation of the Americans With Disabilities Act. I had asked my provider multiple times over the past nine months or so for an exemption or modification to the policy due to my disability status but they said that no exemptions were ever given. BS. Anyway, it will take awhile to get that processed I'm sure. Until then, thankfully my angel of a Oncology Social Worker has taken me under her wing, so to speak. Guess I will ask her this week when I speak with her next.
Anyway yall, hope everyone is enjoying some beautiful weather and making the most of their weekends.
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Hiking Lady - thanks for the rundown on what symptoms to look for. That's good information to have. I was thinking about everyone's different regimens for follow-up care. I have only seen my MO these past couple of years after rads finished. My surgeon cut me loose after I healed over two years ago. So it's just me and my MO. lol I see him in October and then I start the every 6 months schedule.
Sdaniel - so shocking to know that you had broken ribs all that time. You read that it's a side-effect of radiation? That's interesting because last November I tripped and fell and broke my shoulder (the radiated side). This was 16 months after rads finished. I wonder if the bones just in that area were weakened by radiation? I need to get a DEXA test/scan done, but I have not made time for it, yet. I hope I don't have osteoporosis at my relatively young age.
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GoKale - yes indeed rib fractures can and do happen according to research but I've never heard that from a doctor, in fact my RO told me that "unless I play hockey or some other high contact sport the risk of breaking a rib/bone is about the same as anyone else." In my case, not so true as after RADs I had a broken rib too that was healing in my Bone Scan. I'm sure the rate of it actually being documented is far less than accounted for as both I and Sdianel can attest, we aren't listened to about that pain and it must be due to something else. Le Sigh.
Radiation Induced Rib Fractures
"They are considered a relatively common occurrence, especially after hypofractionated stereotactic body radiation therapy (SBRT) 1, used for mediastinal or lung malignancies, but they can also occur with external beam radiotherapy to the breast. "Rib fracture can occur when the radiation weakens the rib cage near the treatment area. This is rare with modern treatment."
List of Studies Done On Radiation and Rib Fractures
Osteoradionecrosis of the Ribs following Breast Radiotherapy
"The addition of whole-breast radiation therapy (RT) to lumpectomy significantly reduces local recurrence and imparts a long-term survival benefit [1]. Several late RT toxicities attributable to whole-breast RT include lymphoedema, skin changes, breast fibrosis, brachial plexopathy, tissue necrosis, pneumonitis, pericarditis and secondary malignancies [2]. Radiation-induced rib fracture (RIRF) is a very rare, late complication following conventionally fractionated RT for breast and lung cancers with a reported incidence between 0.1 and 5%percnt; [2, 3]. Various patient, tumour and treatment factors are attributable in cases of RIRF following whole-breast RT.
The management of RIRF involves optimising analgesia, excluding recurrent disease and trialling established treatments for osteoradionecrosis (ORN). The majority of RIRF resolve spontaneously without intervention [4]. ORN is characterised by radiation-induced ischaemic necrosis of bone, with or without associated soft tissue necrosis. It is a diagnosis of exclusion when fractures within an RT field fail to heal following conservative treatment. A distinction between RIRF and ORN is needed to adapt treatment accordingly."
LOL go me for yet again winning the award for getting the SEs with the lowest amount of odds!! <eye roll>
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Hi Spoonie,
After I was diagnosed and before my surgery, I was absolutely disinterested in making any types of non-health related decisions. What to have for dinner, what movie to watch, where to put the flowers someone sent, pretty much anything minor, I felt like it was too much on my plate. I ended up asking my DH to please just decide on those things (which is not normal at all for me).
The good news is that now that I'm through the surgery, my stress levels are way down and I'm able to input on decisions.
So maybe once your stress levels decrease, you'll feel more interested in actively making decisions again.
Hugs!
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Thanks for sharing, OnTarget. That must have been very supportive and helpful that your husband took over for you during that time. Super glad to hear that as your stress lowered your ability to make decisions again reappeared. Hopefully that will be true for me too.
I laugh as I write my last sentence as it's SOOO ironic because I just came in from having a panic attack while on my walk with my puppers.
It's happening.
All over again.
The same pattern of bone pain and spinal pain I had on Tamox, the kind that was debilitating and ended up with me in bed feeling 90 yrs old unable to move without crying and having zero quality of life....yeah that kind is already appearing in little bits and I'm only 3 days into my injection of Zoladex.
The reason I know this is true is because the day of my injection I could walk around our pond twice without even feeling a problem anywhere, even though I was having a bad Spoonie day symptom wise. I could still walk and not give it a second thought, just enjoyed it and looked for bunnies, dragonflies, and the egrets that are usually common on our walks.
This time....not even 1/2 way around once, and the muscles in my back start to hurt, feel like they will give out, just my spine feels radiating pain. Not like nerve pain. Just I guess how I'd describe it if someone hasn't worked out or moved really in about a month due to recovering from a surgery. I almost felt like I had to bend over and give my back a break. THAT's exactly what I had to do while is was in the last month of Tamoxifen at 5 mg a day.
UGGGGGGH.
Just sitting here I feel the same pain, weakness in my back, like I need to lay down because it's too hard/painful on my spine to sit.
If this is starting now, how am I going to make it for a whole month with it getting worse as more of the Zoladex absorbs???? This was one question I had asked my MO about too, in case of bad SEs is there anything they can due to end the med or does it have to wear off and of course, it has to wear of was the answer.
Like I said, panic city. Tears.
Someone talk me down. A very worried stressed unhappy camper.
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And if my panic attack wasn't bad enough on its own after my walk, I just found a lump on the underside of my nipple! Size of half a pea & just normal nipple skin colored. Have no idea what it is. Doesn't hurt. Isn't red. Nada. Wasn't there a few days ago when I did my check. Never have seen anything like that before in my life. Took a picture of it. Will check again in a few days.
Guess when I go in for my next injection, unless it gets super big in the meantime, I will be asking them what that's about.
Oh cancer is fun isn't it everybody?! 😞
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Oh Spoonie, I am so sorry. I don't know how much good I can do re talking you down or helping you through these fears, but I'm (virtually) here for you. You've been such a lifeline for me, I appreciate you so much. Please call your MO if you aren't feeling any better tomorrow.
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