Dec 8, 2017 03:54PM FelineMum wrote:
What to expect from treatment and ways to cope with side effects.
Posted on: Jan 10, 2016 10:26PM
I just wanted to put it out there. Had 25 rad sessions. I was burnt to a crisp. I was even burnt straight through to my back. I had so much pain from the burns that I had to take narcotics, had to get someone to drive me around. I could hardly sleep for the pain on my chest/back. I had open bleeding sores all over my chest for 2 to 3 weeks after rads stopped. I could hardly keep all of the open sores covered, then they would stick to my shirt and when I pulled it loose the blood would run down my chest.
It caused me to have severe radiation fibrosis. I went to PT twice aweek for 3 months with no improvement or relief in that awful iron bra feeling. There are no words in the English language for how f*cked up it felt, numb, painful, itchy and tight even in areas not technically affected by either rads or surgery. The area on my back ached almost constantly, and I couldn't even reach it to massage it. I used to do these stretches with a pole that PT showed me. I would stretch and 10 minutes later it felt like I hadn't stretched in days. TIGHT, TIGHT,TIGHT!!!!! It was a type of continuous torture that went on for over a year.Two things finally helped, fat grafting 5 times as part of reconstruction, , and 120 sessions of Hyperbaric Oxygen Therapy. Rads wreaked my reconstruction efforts, had 4 extra surgeries because of radiation damage related problems.
I know that not everyone has horrific problems like me, but no one ever told me the real risks. The doctors made it seem like a very minor bit of discomfort was the expectation. The thing is, the doctors all know that some women have terrible problems with rads that ruin their quality of life FOREVER! And they are completely clueless who will wind up screwed over and in misery in perpetuity.
I don't even feel safer, makes me nervous for increased risks of secondary cancers just from having Chernobyl on my body.
I wish I had stood up to the whole insane juggernaut of the bc industry that hounded me into rads. I managed to avoid boost, but imagine how much worse my problems would have been. It bogles the mind that they thought this was a viable "treatment ".Log in to post a reply
Posts 331 - 360 (433 total)
Dec 8, 2017 03:54PM FelineMum wrote:
Dec 8, 2017 04:13PM Sara536 wrote:
I just recently saw my surgeon and was asking some more questions even though it was a year and a half ago. I had asked for a very wide excision because acceptable margins always seem a bit skimpy to me and I wanted a reduction as well. i apparently didn't make myself very clear because when I read the report, the tissue was sent to pathology and the margin was not clear in one area which she then had to "shave" before handing me over to the plastic surgeon. I asked her how the margins could not be clear since I had asked for a good 2/3 of my breast to be removed. She said she did what she always does, which is a standard lumpectomy, So the plastic surgeon would have lots of tissue to push around. AARGH! Then she said "That's what radiation is for - to catch any rogue cells." !!! We had never discussed whether I was planning to do radiation and, in fact the radiologist told me I really didn't have to do it (I guess because of low oncotype). Little did I know my surgeon was counting on radiation to clean up anything she left behind! Lucky for me, I obsessively insisted on radiadiation. Or maybe not so lucky if rads cause more cancer.
Dec 8, 2017 04:41PM FelineMum wrote:
I think the medical profession attracts some people with egos and an unhealthy disregard for others. I once worked at a medical school (staff; non-medical) and would listen to the students (staff; non-medical = invisible).
"What do you call the guy who graduates last in his class at medical school? DOCTOR!"
"Psychiatrists try to help the hopeless. Plastic surgeons are money hungry narcissists who want trophy wives to practice on. Pediatricians should just have kids and get a real job. ER docs are glory hounds and adrenaline junkies ...."
Etc. Etc. Etc.
Certainly not all the medical students said these types of things. Still, it was sickening.
Dec 9, 2017 07:30PM Rosabella wrote:
maybe you can't or it wouldn't be good to take extra off for certain person's body type. I'm sure there's a lot we don't know and can't always find on Google. Be a good question to ask and see what the surg says.
Dec 9, 2017 08:40PM cookiegal wrote:
Literally the posts that break my heart the most are folks who had their QOL wrecked by SE's.
I do believe that doctors minimize side effects, but somebody is the unlucky one.
Does that mean rads is wrong for everyone, no. Was is wrong for you? For sure.
My breast swelling never went away, I eventually got LE, it was more than I signed up for.
It's not fair and I hope you feel as well as possible soon.
Dec 11, 2017 04:20AM FelineMum wrote:
I'm nervous. My appointment with the RO is today. I'm bringing my Mom to have an extra set of ears and to help take notes. I'm wondering about asking if I can record the appointment so I don't have to focus as much on taking good notes.
I feel foolish about worrying so much. I used to interview people as part of my job, and I was pretty good at it. On one level, I know if the RO won't answer my questions, then he's actually answered the most important one: Whether I want to work with him. And tossing out a couple questions I know the answers to, to see what he says isn't game playing. It's a gauge of many things, including a person's honesty and how they answer questions. i.e. my SO answers in vague nothings and warm, fuzzy nonsense. Or not at all.
For the RO, this is just another appointment. For me, this is my life, my health and maybe my death. No wonder the balance of power is so unequal.
Dec 11, 2017 12:14PM - edited Dec 11, 2017 12:29PM by Sara536
I think you are right in looking for honesty and willingness to answer. That's how I chose my RO (aside from the fact that the facility had the best equipment money can buy thanks to a recent grant. However, honesty will expose you to the cons as well as the pros. I figure if an RO tells you the cons at least you know they are aware of them and will be trying to avoid bad outcomes.
Also, if they treat you and your questions with respect, I think it will be an indication that they will be seeing you as a sentient being - not just a bunch of algorithms.
Dec 17, 2017 05:33AM Mimie wrote:
I had cancer in my left breast and was worried about the effect of rads on heart and lungs. Even looked into proton therapy, but they were behind schedule starting to use it at my cancer center. I should have declined the radiation treatment. First the tech proceeded to give my a tattoo on my back bone without telling me, very painful, declined all the other tattoos, and they used tape which stayed in place very nicely. Why put us through more than we have to ladies? Then a week post rads I developed radiation-induced pleurisy, which landed me in the ER as I thought I was having a heart attack. Took two months to properly diagnose it, thankful for the tenacity of my cardiologist, MO, and primary physician. The RO was MIA, and very difficult to deal with. I still have this hideous ailment. On the plus side it’s taken my mind off cancer..
Dec 17, 2017 10:23AM FelineMum wrote:
I've been thinking about posting. The RO turned out to be a kind, caring, intelligent man who agreed with much of what I said and answered my questions, including telling me when he didn't know the answers.
He felt that my taking Xeloda during rads was unusual and said it was being pushed by my SO. He suggested I discontinue it during rads. Having 2 months left of the 6-month-long protocol and a consultation almost a month from now, I've opted to stay on X and put rads on the back burner. He wasn't thrilled with there being a delay, but did say the chemo meant I wasn't waiting without doing any treatment. i.e. better than nothing.
The RO told me things I've been asking my SO and a previous RO without getting answers. It wasn't good news, but most of it I'd already figured out on my own:
The RO advocates rads but seemed to respect my decision to get a second opinion. He had no problem with my taping our session. He agreed we should have sat down earlier, but since I was transferred from a different location, my consultation there was considered to be enough, despite changes in the treatment plan. My file's being kept active/open until I get the second opinion.
I meet with the SO this week. I have questions, although I don't expect answers. I've already asked her point blank about my unusual X dose and cycle "Oh, she does that with everyone." No, she doesn't. I asked her if lymphatic system involvement raised my risk of recurrence. I got a song and dance about "best case scenarios" and "what we always want is ...." That time, I listened more to how she doesn't answer questions than the actual non-answer since I did know what it was.
She gets hostile when challenged. After my BMX, when three weeks had passed and I hadn't seen my path report yet, I asked if this meant I hadn't been given all the relevant info about the findings. She had a diva-sized tantrum. ... and I hadn't been given all the relevant info.
It'd be normal to be dreading this appointment. But I just want to get it over with. I've gotten recommendations for MOs. And I refuse to be an unwitting, unwilling science experiment for someone who thinks they're god and doesn't have to follow the law - clear-cut laws about what patients need to know as well as when unorthodox or unapproved treatments are used.
As for rads, I'm leaning against doing them. It sounds like hell and I want to preserve the quality of life I do have. To me, life is about living. Existing isn't living. I'd rather have good days than more days.
Dec 17, 2017 10:41AM marijen wrote:
Thank you Feline, your RO sounds wonderful. Mine was quite the opposite and I hope I never see her again. So sorry you have such an aggressive cancer but at least you are mindful of being your own advocate and have educated yourself. It’s only 10 months since your dx approx and you have so much knowledge. Will you be trying to find a new SO, diva like tantrum is unacceptable.
I have often wondered if I have a positive node behind my breastbone as it swells and hurts sometimes. But if a PET Scan doesn’t find it, then I guess not? I had/have an occult primary with only one positive lymph node.
Well I agree that probably rads are necessary in your case. Please have faith there will be many new options in the future.
Dec 17, 2017 04:01PM - edited Dec 17, 2017 04:26PM by sas-schatzi
FelineMum, I'm from Detroit originally. I agree U of M is the only place to go except for the facility up in Flint. Hurley I believe. But since the water crisis up there, I have no clue how that impacted them. Unknown to many they did some of the earliest research on sentinel node bx.
Back to you, If you had 2/3 of the breast removed, which is insane from a surgical standpoint. BTW I'm the person that walks into a room and pisses everyone off. What did they leave you with? AAND what was the point?
Agree wholeheartedly of changing SO. BUT must sincerely support the addition of an MO. Any case I know of where a SO tried to direct an oncology case, got mucked up.
Easy analysis: Cardiologist versus cardiac surgeon. Sounds similar. NOT. Residencies have crossovers, but focus is entirely different. Surgeons are cutters and medical doc are into physiology of the body and how drugs work. Docs that are cutters when admitting for surgery less than 23 hours, will write an order to have the hospitalist or medical doc follow for medical matters" They're variations on this. The key is cutters i.e. surgeons recognize their limitations on medical aspects.
With the explosion of information in each subspecialty of the AMA, each subspecialty has difficulty managing the info in their own subspecialty. I believe those that try to think they are aware of other specialties are a bit arrogant. In some cases way arrogant.
In regards to radiation, 1. I never been impressed with reports here on BCO of outcome. 2. Radiation creates localized scar tissue that can lead to lymphedema. 3. poor tissue healing b/c radiation obliterates vessels that would bring healing cells to the area. 4. Seek studies that identify outcomes of those that received Lumpectomy and radiation as a primary treatment versus mastectomy and adjuvant treatment.
I was a prophy seeker when BC was found. It's unfair that I offer an opinion on radiation. It was never considered in my treatment plan. But I had many years of surgical contact with those that had radiation therapy. YEARS after the scenario. Tissues that suffered b/c of radiation for the given body part, that later had complications. Or those that developed lymphedema post radiation therapy. Not good. Not good.
WHY create a future problem when another modality can be used?
Dec 17, 2017 04:15PM - edited Dec 17, 2017 04:33PM by sas-schatzi
Felinemum Your list is great!. I suggest creating a thread topic "Questions for the Radioncologist Pro & Con" You can do it now. As a topic starter you can always revise a topic as new questions come up and add them.
Topic boxes can be re-entered at any time by the topic originator. I revise my topic boxes whenever I need or want too.
I do suggest that you separate out the questions where there is more than one question in a sentence.. Because they are separate questions.
That way someone could run off on a printer your question list and would be able to take it to their doc for interrogation. Leave a double space between questions. That way it allows for the person printing it off, space to write the doc's answer.
Do NOT underestimate the quality of your list. It's a goodie.
Dec 17, 2017 11:26PM marianelizabeth wrote:
Not sure how I ended up here tonight. I watched the first three episodes of Breaking Bad, swore I would go right to sleep but searched brachial plexus cancer and here I am. I know some of you from here and there but wish there were more positive stories. So sad to hear how rough it has been for many of you. I do need to sleep but will be back. I am doing well despite loads of rads
Dec 20, 2017 06:32AM FelineMum wrote:
I will be switching to an MO. I want to have my consultation next month before I make any changes like that. I was supposed to meet with my SO today, but I felt so stressed out about this appointment and couldn't find someone to go with me ... so I rescheduled for after the holidays. I saw no point in getting more upset about it. I'm dreading the SO's attitude and lack of answers. I want to know why she orders a monthly antigen test. NOT STANDARD PROTOCOL. Lousy predictors of anything and doing them monthly is nerve-wracking. My numbers are within the normal range, but these tests are great for false negatives, false positives and an inability to check for many types of recurrences and mets. I've read they're so stressful for patients and have such little medical value that many oncs don't use them. YMMV
Mental note: When someone tells you, you're one of their favorite patients; get up and run! Like who you will, but as a professional, act like one.
Random question: When's your anniversary/cancerversary? As in, is it when something was found? I found a lump/tumor on New Year's Day. Or is it when you got your biopsy results? I've heard 'mammoversary' as a term for it, as in when a mammogram found something being when those first 365 days begin. My mammogram found nothing. Ditto on my ultrasound. I had a palpable lump which was biopsied after those tests showed nothing where something clearly was. i.e. How do I calculate my anniversary? To me, the day that changed everything was the day I found that lump.
Dec 20, 2017 12:09PM lala1 wrote:
FelineMum--I count my cancervesary as the day the cancer left my body. For me that was my mastectomy. I didn't need chemo or rads, just Tamoxifen. My 5 year cancerversary was a week ago today! It was a great day!!
Dec 20, 2017 03:08PM - edited Dec 20, 2017 03:09PM by Cpeachymom
lala1- congrats on 5 Years! Here's to many more!
I count my cancerversary as the day they told me it was cancer
Jan 2, 2018 07:59AM FelineMum wrote:
I have a list of questions for an appointment tomorrow with my surgical oncologist. Input please!
She never said anything about switching to an MO post-op and I didn't know about doing so. She rarely gives an actual answer to questions. This may be our last meeting and I want her on the record with answers, not warm fuzzy nonsense and vague nothings.1. What is the 3-year survival rate?
2. What is the 3-year disease-free survival rate?
3. What is the 5-year survival rate?
4. What is the 5-year disease-free survival rate?
5. What is the long-term survival rate? With or without recurrence?
6. What's my OncoType (DX test) score?
a) If not tested, why?
7. What are my chances of survival, based on my cancer as you see it?
8. What is the goal of a care plan: to cure the cancer or to keep it under control?
9. What are the risks and benefits of each of my options?
10. How much time do I have to make a decision?
11. Is 'no treatment' an option?
12. What is the goal of further treatment?
13. Is it safe to receive radiation while taking Xeloda?
a) Why am I on the rectal cancer dose and cycle?
b) How many of your BC patients do CRT?
14. What are the chances the cancer will come back after more treatment/radiation?
15. What would we do if the treatment doesn't work or if the cancer comes back?
16. How would severe skin side effects/adverse reactions affect my ability to complete radiation? Have reconstruction?
17. Am I being told to not worry about long-term side effects because I'm not expected to live that long? Or are they seen as acceptable trade-offs?
18. How often will I need to have follow-up exams, blood tests, or imaging tests?
19. How will we know if the cancer has come back? What should I watch for?
20. What will my options be if the cancer comes back?
21. Please explain your answer to my concerns on Dec. 26th about swelling and pain in my left shoulder and underarm. You were the on-call doctor. Why did it take you 2 1/2 hours to return the answering services pages?
a) Are you aware that expanders cannot freeze?
22. What are the differences between surgical and medical oncologists?
23. Post-surgery, what are the advantages to staying with a surgical oncologist? Switching to a Medical oncologist?
Jan 2, 2018 08:12AM MamaFelice wrote:
Good morning FelineMum!
Wow! Those are fabulous questions-- ones that I have copied and pasted into my question file for future reference!
I'm just a bit confused based on your Bio. It looks like you already had surgery--BMX under the care of your SO, and already received chemotherapy--how many treatments of TCarb? Also under the care of a SO...not an MO? I just want to confirm this before moving to answer your questions. Have you started radiation or met with a RO? May I ask what hospital you are being treated at? Best wishes and hope to be of some assistance
Jan 2, 2018 09:03AM FelineMum wrote:
I'm still under the care of the SO who did my BMX in July. I had six neoadjuvant rounds of carboplatin and taxotere (Is that TCarb?). I'm currently on Xeloda, now in my 5th month. After prepping for rads and having one treatment, I put it on-hold. My experiences were not great. I did meet with an RO after that and he answered more questions than anyone else had, including that I have extensive lymphatic vascular involvement with a positive node behind my breast bone. Somehow, despite my asking, no one had mentioned that before.
The RO said that being on Xeloda means I'm doing something vs. just waiting, although he would prefer I stop the X and do rads. The SO wants rads while on X. For breast cancer, there's no known benefit to doing so, side effects are much more severe and it may raise recurrence rates.
No MO involved. I didn't know that having one post-op was standard procedure until I started asking questions, contacting different groups, talking to different people and researching. I'm getting a second opinion at the University of Michigan next week. I do want an MO. But I don't want to make any changes until after my second opinion.
Jan 2, 2018 09:46AM MamaFelice wrote:
First of all, congrats on coming this far in your fight, and showing your BC who is boss. in I think I've got it-- except, which doctor was overseeing the neoadjuvant chemo? SO or did you have a MO then? Based on your comment no MO, I am thinking SO, but that seems so offbase that I have to confirm. And I made up the TCarb! 😜I know my treatment is referred to as TC-- referring to Taxotere and Cytoxan, so I made it Carb to differentiate.
For me at both my local hospital and major institution that I went to for 2nd opinion (glad you are doing such btw), I have a team of all 3 docs at each that discussed my case together and weighed in, then spoke with me individually. I went for 2nd opinion because I was receiving conflicting "advice" from the first team of docs so wanted to talk with another group.
Is the positive node behind your breast bone the 1 node you refer to in bio or is that something discovered on a scan after surgery? Do you have a copy of pathology report from your SO? This will tell you all about the results from surgery including nodal involvement-- which is important since you received neoadjuvant chemo, which is typical for triple negative (TN) BC. May I ask your age? Is there someone that can go with you to the appointment at Univ of Michigan and be your advocate and listen and take notes with you?
I'm note as familiar with xeloda (yet), and you definitely want to get another opinion re the rads at the same time. If there is a node in your chest that still shows BC, I think you will want that area radiated. Were any nodes taken from under your arm?
Sorry for all the questions-- hopefully they are having you think and gather necessary information for your upcoming appointment at UofM
Jan 2, 2018 10:21AM FelineMum wrote:
I never realized how off base my experiences have been until recently. Which makes me feel like an idiot. Except that if I were going through my local healthcare system, I'd be totally screwed. I travel an hour each way to Grand Rapids for non-Catholic healthcare. Locally, it's Trinity Health which has had many lawsuits filed against it by the ACLU regarding women's health care - including cases involving cancer. People here say, if you want decent health care, at least go to Grand Rapids or Ann Arbor if you can.
The SO oversaw my chemo. She is very well-regarded. People talk about how she's a past president of a research group and once was co-something of a breast cancer clinic. I'm realizing that she may be one of those people who should've quit while they were ahead - go out on a high note.
She's not accessible. If I have questions, I message them online and either a nurse calls me or I get a message telling me to ask that at my next appointment. After my BMX, three weeks passed before I knew more than that I didn't have a pCR and one sentinel node out of three was positive. I kinda lost it and sent a scathing message that said I had a legal right to know everything about my case, to have access to documents like my path report and it was totally unacceptable to keep me in the dark.
The SO's been real fun to work with since.
Anyways, I'm 42. 41 at dx. My PET scan and breast MRI picked up the breast bone node. The RO said the scans done for rads prep didn't show it and it appeared to be gone - but that those things can be deceiving. He also said my lymphatic channels/pathways in that area now looked normal.
My dad and possibly my mom will be going to U of M with me. My dad's a cancer survivor, so he's a good person to bring with. I'll be recording and taking notes. I find that when you write things down, people tend to talk slower and are more willing to repeat themselves.
Jan 2, 2018 01:58PM MamaFelice wrote:
Well, it sounds to me like you are totally on top of things!! I'm 47 (46 at Dx) and hate dealing with all this at a young age....I see you too!
Also sounds like your SO is top notch-- and following best treatment plan for you, but I agree that you should have all info given to you or available for you or see. Our hospital has an online service that you sign up for and it has all my appointments, test results, and even doctor notes available for me to look at. You may want to see if such is available at your hospital and you just need to plug in. You def want to keep a file with all your paperwork, and be sure to gather everything before heading to UofM because they will be asking to see results for everything from your original mammogram to your biopsy to your surgery pathology.
Glad to hear that the RO is saying all looks clear from his/her perspective on your scans...and figure all cancer has officially been "chemofied" or removed! I had surgery first and now in middle of chemo and have to just believe that between the two I'm knocking this cancer outta here!
I'm going to take a closer look at your questions now and get back with you regarding all that! I appreciate you sharing your story with me. Hang in there-- and rest in knowing you are cancer free! Positive attitude is a big player in getting well!
Jan 2, 2018 05:13PM sdianel wrote:
update. Good news! I cooked my first meal in 7 months on New Years Day!! Woohoo! In November I had 2 weeks stabbing rib and back pain but when that went away I got really bad sciatica. Couldn’t sit, stand or walk. I’ve had it 4 weeks! Seems that my body isn’t dealing with inflammation since radiation and I can’t take NSAIDs because of ulcer. So I’ve been almost bedridden in severe pain for 7 months! Finally made it to PT and it only took one visit to help lymphedema with being on Pentoxifylline and vitamin E. Had to switch PT for the sciatica. Shot of anti inflammatory and steroid at ER and PT finally helped. I’m very tired and nauseous from Pento. Reduced dose from 3x to 2x daily which helped nausea. Going to take awhile to get strength back. PS: the heart lung damage was on my consent form. Wish I had taken more time to make decision! I was so scared at the time! Prayers to all and thanks for being here!
Jan 4, 2018 03:02AM - edited Jan 4, 2018 03:03AM by FelineMum
That's great! I felt so proud when I made an actual meal for the first time after my BMX. It took me about 5 months to do that. And another month to do it again (smile). It is an accomplishment. I'm glad you shared it with us.
I have back probs that my physician had diagnosed as sciatica. When I saw an orthopedic specialist, he told me that 'sciatica' is used as a general label by non-specialists when someone has both back and leg pain; that it isn't really an actual condition. It's more a way of simplifying things for patients. He's not a fan of this.
I get quarterly spine injections for a specific problem. Without them, I can barely function. If you haven't already, I encourage you to see an orthopedic specialist. I'm glad the PT's helping.
What did you cook?
Jan 4, 2018 09:10PM macb04 wrote:
Hello FelineMum, this is a good place to talk about the unfortunate reality of rads" therapy ". Your SO sounds like the nasty, abusive woman I had. She got angry that I was getting High Dose IV Vitamin C. Told me if bc came back they would " Cut off your ARM!" She said that to me in front of my friend. The RO I had was just slightly friendlier, but full of Bull Sh*t, and very evasive when I asked questions. SCCA was an absolutely awful place and I will never go there again.
I am so sorry to hear about their negligence. That's what it was, pure negligence on their part. I wish you could sue them. Then they might stop being complete and utter a**holes. Shame on them.
Jan 22, 2018 08:56PM Mvmoss wrote:
Today I finished 26 rads. I still have 2 more then my RO wants to do 6 boosts.
Last week had burning pain started on my right side of back and spread across my whole back now. The techs and RO say it can't be from the radiation cause it only targets the area being treated, the whole breast. I can't sleep burning constantly,
I hate it! I wish I would of NEVER EVER done radiation. They made it sound so easy. It's horrible, I'm in so much pain and worried about what other damage this is causing. I don't know how to stop this. I totally regret it also!!!!!