Wish I had never,never done rads, DEEP REGRETS

Thanks marijen!

Margins are only a few mm, she couldn’t cut an extra cm? I guess patients instructions are meant to be ignored. No admition that she didn’t hear your request? It’s so frustrating

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.

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.

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..

Hi Marijen,

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:

• Based on my PET scan and other imaging, it's very likely I have a positive node behind my breast bone. X-rays and cat scan images no longer show it, but the odds are it's still there since my response to neoadjuvant chemo was partial, at best.
• Overall, I have heavy lymphatic system involvement. I'm not Stage 4, but due to it being TN and how advanced it is, it's likely terminal. Rads might give me more time, but there's no "cure" for me. My chance of being alive 5 years from now is 30%. And that doesn't mean disease-free.
• The X dosage and cycle my SO put me on is used for rectal cancer. The RO called this highly unusual and very aggressive. He seemed to be uncomfortable with it and relieved I wouldn't do it.
• The incident during my dry run is being investigated. After my appointment, I spoke to the facility manager.
• Rads could cause everything from heart disease to thyroid under-function to skin cancer to lymphedema. The skin side effects could be severe.

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.

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?

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

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!!

Hey y'all,

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.

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. 26^th 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?

Hi MamaFelice,

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.

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.

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!

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!!!!!