lumpectomy without radiation

ssam

I am on Vancouver Island and have had a lumpectomy / partial mastectomy, and now am trying to decide on radiation or not. My GP and General Surgeon do, for the most part support my decision if I decide not to have radiation, but my Oncologist advises that because I had DCIS present in my needle core biopsy and even though there were no cells present in the specimen removed from the surgery, recommended treatment is still radiation. Followup mammogram 8 weeks after surgery also shows clear. Also, it is whole breast radiation, not targeted radiation, she never even mentioned a choice on that.

Are there others that have not had radiation? I am not a great candidate for Tamoxifen, as I was not diagnosed with invasive carcinoma, and she says it only reduces the risk of reoccurrence by 3%, whereas radiation would reduce the risk of reoccurrence by 10%.

I was thinking of asking for a 2ndy opinion by another Oncologist, but my GP says it is unlikely another Oncologist will have a different opinion.

erina1986

My situation was similar to yours and I agree with your GP that it is unlikely that a different oncologist will have a different opinion. you may find it helpful to see a Naturopathic doctor. They will give you a more balanced opinion, they are not against conventional therapies they help to support patients through these therapies. I was dead against radiation because I was fearful of side effects then I saw a naturopathic doctor who focuses on integrative oncology and it gave me the confidence to pursue radiation without fear of side effects cause I had that support. The ND that I saw was Dr. Adam McLeod in Vancouver, I had a great experience with him and I would highly recommend seeing him for a balanced opinion. There are ND's on the Island as well, one of them is Dr. McKinny and my sister had a good experience at his clinic.

ChiSandy

My former office manager (with whom I share both a PCP and MO at two different health systems) was diagnosed with IDC at 76 and had a lumpectomy at 77. She was not given chemo or radiation, and is only on Femara. 3 yrs. later, so far, so good.

poopysheep

I decided against radiation, just doing tamoxifen. Going to save it for if it comes back more aggro - haha.

Purple1205

Hi boobysheep

You posted that you were skipping radiation so I was curious as to how you are doing.  I am opting out of radiation.  I am going to be starting tamoxifen soon.

Salamandra

Were your doctors all supportive of skipping radiation?

I definitely got the feeling they would not be happy if I refused it, and might well strongly encourage me to go back and get a total mastectomy.

In the end the research I did and the meeting with the radiation oncologist made me feel more positive about it and I'm going for it. But I had a lot of questions and it wasn't that obvious to me. Namely, it is clearly effective for reducing local recurrence but the impact on overall mortality seemed so slight.

In the end, though, I guess the impact of tamoxifen is pretty slight too (my oncotype also said about 3%). It is hard to feel confident about any of this...

Purple1205

My oncologist did try to encourage me to change my mine but knew it was my decision to make.  I have my one month follow up appointment with my surgeon on Tuesday and I don't think she will be happy with my decision.  I will have to see how that goes.

Purple1205

Hello

I met with my surgeon and as I thought she would prefer I do radiation but I don't believe the benefits outweigh the risks for me. So no radiation for me. Everyone has to make the decision that works bes for them. And no, it is not an easy one to make. Good luck to you.

L-O-R-I

Doctors can't be supportive when you decide to not go ahead with radiation.  They have to try and get you to do it or they would be in trouble for not following the "set breast cancer protocols".  I don't believe that the benefits of radiation out-way the risks either.  Especially when one of the long-term risks is cancer!  The Dr. keeps doing lumpectomies until they feel that they got all of the cancer and then when they feel that they got it all, they then do radiation!  If radiation worked so well, why didn't they just do that in the first place, instead of putting you through multiple surgeries?  What seems sad is that women try using their own common sense and then go to hash it out with their Doctor, only to be pushed in the direction of radiation because the Dr. has no other choice but to follow the "standard protocol".  I also agree that everyone has to be comfortable with THEIR choice.  It is a tough one!

Meow13

LORI, my surgeon said I had no choice I would have to have radiation after lumpectomy. So he pushed mastectomy with DIEP reconstruction. I did that but he wrote notes on my files when I refused chemo after my high oncodx score. Trying to protect himself I guess.

I wondered what if he did the lumpectomy and I just was a no show for radiation I mean what could they do?

L-O-R-I

Meow13, your surgeon has to tell you that, but it is your choice whether you do it or not.  You don't have to tell him in advance that you have no plans on doing whatever you chose not to do.  You will probably receive several phone calls to reschedule, but you can tell them that you will call them when you are ready.  Women have the right to change their mind.  I refused my 2nd lumpectomy, sentinel lymph node removal ,anti-hormone drugs, and radiation.   It just seemed so conflicting to me!  A great percentage of sentinel node removals come back negative and yet the woman is left with life-long lymphedema in her arm.  I've heard of women with a negative result in their lymph nodes and yet they still end up taking chemo.  The Dr. is just following what he is told that he has to do for a breast cancer patient.  Nothing much is individualized to the patient's type of breast cancer except to be put on anti-hormones or not.  Severity, yes, but even that is still pretty much the same protocol.  When I refused to move forward with the typical suggested treatment, my family Dr. wanted me to put it in writing for her so she could have it in my file.  As long as their butt is covered, they are fine.  After I did the letter, she relaxed and told me that she would be happy to be there in any way that I may need her.  I will still want to follow up with blood tests and mammograms/ultrasounds from time to time.  I am not just blindly refusing treatment.  I have a regime that I have been following for the last 8 months and I have dropped 35 pounds and haven't felt healthier in years.  What so many people don't understand is that it takes way more energy and self-control when you choose to beat breast cancer in a natural way than it does to let someone else tell you what to do every step of the way until you are considered cleared from breast cancer.  Doctors complete your treatment and then let you go back to your regular lifestyle.  Even if you choose to do both the conventional treatments that their Dr. recommends and to also use nutrition and herbs for healing, it is better than only the conventional ways.  Don't worry about upsetting your surgeon.  You are not his personal friend.  Do lots of reading on alternative options and decide what is right for you.  There is so much that science does back up regarding alternative treatments.  Ty Bollinger has some really good information.  Google "The Truth About Cancer".  His videos are very informative with a lot of great testimonies too.  Nice to chat. Keep me update on your journey!

seeclearly

Thank you all for weighing in on this topic.  L-O-R-I, my diagnosis seems very similar to yours, so I am very interested in how you are doing and specifically  WHAT you are doing to combat the cancer in a natural way.  I had my lumpectomy last week for DCIS/microinvasion and I am waiting for the excisional pathology report.  I did NOT do a SNB.  I am leaning away from doing anything else, medically; at the same time, I don't want to be stupid.  I know every cancer and every person is unique.  Thanks to all of you for your advice/input. 

L-O-R-I

Hi seeclearly, I am doing great!  Thanks for asking.  I have lost most of my access weight and haven't looks this good in years either!  I exercise almost every day on a mini-trampoline/rebounder called the Bellicon (lots of videos on line if you Google "Bellicon Work-outs"), I eat and drink an all organic diet, I take several herbal supplements a day both in capsule form and in teas, I pay close attention to boosting my immune system health by a daily routine of "dry brushing" (google that) and a coffee enema to detox my liver, I did a parasite cleans (no one likes to think about that!), I use infrared heat with caster oil to my breasts and abdomen 5 to 6 times a week,  I listen to soft music while doing those last 2 things and meditate on positive things,  I deep breath whenever I remember during the day but especially while meditating, I got rid of all unnatural shampoo, hairspray, body and face creams, dish and laundry detergents, perfumes, deodorants, etc.  There are all- natural and organic items to replace them with.  I go out of my way to tell myself not to sweat the small stuff and to pick my battles (for some reason my husband and I are conflicting less ).  I've Googled on how to get my digestive system to be as alkaline as possible for good digestive health.  When I pump gas, I do it as quickly as possible and breath as shallow as possible.   I know I may sound like a crazy person for doing all of these things and more, but for right now, I believe that every little thing can change the direction of my diagnosis and if that's what I have to do for a couple of years, then its a small price to pay to avoid some of the life long side effects that I may have had to endure going the traditional route.  I think that staying in tune with how you are feeling about things, both physically and mentally, will really help you out when you are questioning what to do for your situation.  No matter what you chose to do, it is a battle for your long-term health and it is a battle that many have won, no matter whether they have gone traditional, in a holistic way like me, or a mixture of the two.  I'm curious, too, how your results of your lumpectomy will come back!

L-O-R-I

Found this today and enjoyed watching it, so thought I would share!  Not for everyone, but you can take out of it what you like )

https://www.youtube.com/watch?v=-wMagRD3E0A

seeclearly

Thank you, L-O-R-I for the info and for the video. I appreciate all the info. Happy to hear you are doing so well. (You don't sound like a crazy person at all. I will definitely post when I get the excisional biopsy results. I'm sure I'll need more guidance.

seeclearly

L-O-R-I, I got my excisional biopsy results and it is GREAT news! Clean margins! (5mm and 6mm!) The microinvasion was bigger than expected (2mm vs. anticipated .5mm), and many would define that as IDC, but my doctor went with the "single focus of invasive carcinoma < 2mm = microinvasion" definition and I am happy to go along with that! I am so happy I don't need another surgery and so happy nothing worse was found. So much to be grateful for.

At this point, I don't expect to do rads or hormone therapy. My doctors don't know this yet, but that's my gut feeling for what I need.

Thank you all for posting all that you do, revealing all possible options. I so appreciate all of you.

L-O-R-I

Seeclearly

I'm having a toast to you right now!! Congrats!! There are so many options you have right now and your Drs. will do their best to scare you. Be strong in your convictions!

seeclearly

L-O-R-I, thanks for the toast! Beautiful tree. I love this time of year. Thanks for the pep talk, too. Yes, I am trying to mentally prepare myself for the medical pushback. Knowing others (like you!) have also taken this path without rads/hormonal treatment, for a myriad of different and often personal reason, is also very helpful to me. I realize there are no perfect answers and no guarantees regardless of which path is chosen. I've told all my family of my choice, and they are all supportive of me and accept it is my choice to make.

runor

L-O-R-I, you posed a question, sort of, back at the start of this topic. You asked (I am paraphrasing) if radiation after lumpectomy is supposed to be so good at saving your life, then why don't they just do the radiation in the first place and skip the lumpectomy?

Good question. According to your bio you have, to this point, made 32 posts. I wonder how much reading you've done. It should have become obvious that radiation comes in many different flavours. If you aim to 'mop up a few stray cells', as is the point of radiation following a lumpectomy, then you apply one type of radiation. However the radiation needed to kill a tumour is a much different animal. It is critical to know this before making any sort of decision. To assume that radiation after lumpectomy and radiation that kills a tumour are the same thing is just plain dead wrong. One needs to know the weapons of war they are about to use in battle and this is a basic thing to know. Lumpectomy radiation and tumour killing radiation - not the same thing!

Forgive me if I say that I sense an ever so subtle tone of accusation that the medical establishment is trying to pull a fast one on us cancer patients by duping us into all sorts of unsubstantiated treatments that come with their own risks. Yes. The conventional treatments carry risks. Cancer carries a risk. The risk that it will come back and kill you. How comfortable you are with that risk determines what treatments you choose. But your doctor and modern medicine are not the bad guys in this drama. (which is not to say that bad stuff doesn't happen and there aren't rotten apples, but overall modern medicine helps us not die from things like stepping on rusty nails)

Over in the Steam Room thread many people, having lived through some terrible treatments, post that they are pretty sick and tired of someone who blithely swoops in and starts telling them that they can cure cancer with kale, lots of lemon juice, staying out of the sun and wearing a tinfoil helmet. This preachy tone, this inexperienced lecture from a know it all (who knows nothing at all) is how unsuspecting people get throat punched by bald women missing a boob. And I say, hooray bald woman! To read it posted here is disturbing.

It is the job of the doctor to provide you with the latest information and treatment that he/she has available. Anything else is malpractice. Your doctor may know more about survival rates of people who take radiation vs. people who keep crickets for pets. It is their JOB to make this apparent and obvious to you. Your right to refuse any treatment is absolute. Hopefully you have thought this out clearly and with scientific rigour, not emotional wishing that there is a silver lining and quick answer by living the right life. Many, many, many, of us lived the right life like clockwork AND GOT CANCER ANYWAY. (not me, I smoke, drank, gambled, swore, drove fast, cheated on my taxes and ate way too many chocolate bars). So the idea that you can make some right life sacrifice to the God Of Cancer and he will forever after stay away from your door is, sadly, dead wrong. There are no guarantees, no matter what you do.

Anyone choosing an alternative method should do so because the research they have conducted shows peer reviewed success in several trials. Not because some zealot on Youtube says so. Choose alternative medicine as an ACTION that you believe to be right and good, not as a RE-ACTION to medicine that you think is bad and damaging. One is motivated by intelligent decision making and the other is a knee-jerk reaction without much objective thought. While this is a very emotional time, in the wake of a recent diagnosis, emotional decisions are often not the best kind to make at this time.

L-O-R-I

That is exciting for you, seeclearly, that your family is so supportive! You will enjoy going on line and learning about all the things you can do to improve your health and immune system. There are so many things like certain herbs or foods that can kill cancer cells with no side effects. Lots of cleanses you can do too, so that your body can effectively fight any cancer cells that may still be in your body. I think that the route I’ve chosen is way harder than just saying yes to whatever your Dr. says to do. It’s time consuming and takes a lot of commitment! The advantages are that you can keep working if you chose to, there aren’t the side effect which can be life-long, and you end up being a healthy weight due to eating healthy and exercising regularly. I feel so much better than I have in several years, both physically and mentally. When do you meet with your Dr. next

seeclearly

I met with my doctor for the surgical f/u appt. on Thurs. My surgeon is fantastic and really listens to me. I misunderstood the diagnosis by my doctor regarding the cancer component: it is 2mm with one focus, so she staged it at T1a, but NOT considered a microinvasion. FYI. I am meeting with my radiologist next week, who is also a really good guy and listens. That's all I want is for people to hear me AND for me to hear them. I really want to get all the information I can so I can make the best decision for ME on what to do re: adjuvant radiation. My doctors have all been great, and naturally, want me to follow the accepted standard of care, but I don't feel pressured to do what they recommend. They all say it is my choice.

One of the considerations, as Purple1205 noted, might be to save the radiation for the next time (should that occur) ...

L-O-R-I, I am so glad that you are feeling so great and making such healthy choices. I hope that continues! I, too, have cut all dairy and meat and refined sugar. I have been exercising at least 30 minutes a day as they say that is the most impactful thing you can do. I wasn't overweight, I already exercised regularly, and I didn't eat much meat, so it's not a huge change. But I do feel better. It's always a good idea to eat healthy and to exercise, right?

L-O-R-I

Hi Seeclearly, I’m glad your Doctors and Radiologist make you feel comfortable! Nice or not nice, they all have to try to move everyone in the same direction. Biopsy, lumpectomy, nodes removed, radiation, anti hormonal drugs (if positive to hormones), etc. If you are not comfortable with some of these procedures due to things you have read or heard, trust yourself and your instincts. You are the one who has to live with your decisions/side effects.Keep studying and learning about the things you can do to improve your health too. You’re Doctors aren’t going to educate you much about that. Remember your family Is there to support you! So am I )

Lori

seeclearly

Thank you, Lori, for all your support. I really do appreciate it.

runor

Forgive me. Forgive me because I can't keep my big mouth shut any longer. But I am having a very hard time with the tone of this thread and some of the claims being made here. Like, certain foods and herbs can kill cancer cells without side effects. Uh.... on what solid, peer reviewed evidence is this based? A statement made at the start of this thread, that if radiation was so effective why don't they just zap the cancer with it to begin with and have the cancer go away. Wow. Just....wow.  It is utterly IMPERATIVE that before ANY DECISIONS be made about what treatment to take or not take, that you understand, WITH ABSOLUTE CLARITY the situation and the procedures / treatments being offered. Until you have the whole picture, clearly painted, and a grasp on the basics, no one is in any position to make any intelligent decisions. 

First, just because you don't like the traditional treatments on offer does NOT automatically mean that the alternatives on offer are any better. This is faulty thinking. You might decide that radiation is not for you and just as rightly decide that jogging a mile with  carrots in your ears doesn't sound like it's a much better option. So, it is very possible to find that you don't like ANY of the options, traditional nor alternative. But declining one does not mean that the alternative has somehow achieved automatic credibility. 

Radiation after lumpectomy is designed to mop up a few stray cells. Radiation to kill a tumour is a  VERY DIFFERENT animal and the suggestion that they are the same displays a lack of understanding. If you are unclear on the difference between post lumpectomy radiation and tumour targeting radiation, ask your rad onc to explain the difference. Anyone grappling with this issue needs to clearly understand the purpose, goal and method for after lumpectomy radiation!

Seeclearly, I see you are newly diagnosed. All I have to go on is my own experience and what I have read of others, but this is a terrible, terrible time. I was freaked out. At first when I was told I had a 'thing' and it looked like a radial scar, I did some reading and found that most radial scars turn out to be nothing. I had convinced myself that I probably shouldn't even have a biopsy, this was over-treatment, I had no risk factors, I had no reason in the world to have breast cancer, I had an 8% lifetime risk. I was all ready to walk away and not do a damn thing, because on some level the thought of finding out bad news was too much to cope with. It was an ugly thought. This crap happens to Other People. Not me. But I could tell  Hub was worried so to ease his mind I said okay, a surgical biopsy. Let's have a good look at this stupid thing and find out for sure that it's nothing. It wasn't nothing. It was cancer. 

I realized that by doing nothing I was taking a big risk with my life. Oh, there are no guarantees, none whatsoever, that throwing the kitchen sink at breast cancer will save you.  But are you comfortable passing by the few treatments you have available? Yes, they carry risks and misery. No, they are not perfect. Is doing nothing perfect? Is it better? These are hard questions asked at a time when you are fragile and terrified. This is the worst time to make big decisions. This is the worst time to think emotionally. You need every critical thinking skill at your disposal. 

Your doctors are not the enemy here. They have taken an oath to do what they can to keep you alive and they know that chemo, radiation and surgery carry risks, but risks weighed against your potential long term benefit. Does the organic grocery guy take the same oath and consider the same outcomes? I say no. 

Please. Before you turn down any treatments, do research that is peer reviewed and associated with reputable medical establishments. If you decide not to take conventional treatments, you need to know a lot more about why or why not. There is a lot on this site to help educate you on the different approaches people have taken and why. Read. Gather information. Think about how big a gambler you are. Because you are at the poker table and you have the hand the dealer dealt you. How do you place your bet? Your life might be on the line. Prayers and strnegth to you. 

BrooksideVT

Seeclearly, you are very unlikely to find a doctor who tries to shove you in one direction or another. Anyone who did that would be performing an ethics violation. Today, it is all about informed decision making and the doctor, perhaps working with an informed decision center at your hospital, will see that you have the knowledge to navigate the choices we have to make. Not only can your team provide you with info, they can also address any concerns you may have about things you may have read, or hear from friends. To me, the most important thing my docs could do was to provide me with statistics from published studies, and links to the studies themselves. For me, outcome was my motivation.

I was very much on the fence about radiation treatment and both my surgeon and my R/O were very clear that although rads was indicated, my particular cancer was very slow growing and it would not have been especially unwise to decline rads. I looked at the odds and decided to go ahead. Today, I'm happy I did so.

seeclearly

You ladies here are all so awesome, taking time out of your lives to give people like me thoughts, advice, and most especially, your own story. I thank you all and I value everyone's input, no matter how widely divergent they might seem to be, at times. I do not believe doctors or medicine are the enemy, by any means. I welcome ALL points of view and all the varied ways people fight their own cancer. As so many have stated on this website, each of us is a snowflake with a unique situation particular only to us.

Runor, I love your passion. Fear not; I am researching everything. That is just what I do (now). Knowledge is power. In this particular situation, that is all I have done since receiving that first phone call suggesting there might be a microinvasion - research. Thank you for telling me your backstory. That was really helpful for me, as my response this time was very similar to yours. In 2012, when I was 49, they found something "suspicious" in my annual mammogram. They sent me for a diagnostic mammogram and ultrasound. Then a needle biopsy (the yuckier version where you are lying facedown on the table). Then I saw the surgeon, who told me that they weren't really sure (after all that!), so an excisional biopsy was recommended for a bigger sample, and as we're doing that, might as well do a lumpectomy. I stupidly went along with the whole thing. There was nothing - just calcifications. Yay! Happy news! Yes, happy news, but I was mad at myself for just blindly doing everything I was told to do without researching.

Fast forward to Oct. 2018, 6 years later. Story starts the same: annual mammogram, diagnostic mammogram, ultrasound, needle biopsy (same breast, right, different location). I was so skeptical throughout the process. I told the doctor who did the needle biopsy that if this came up inconclusive like the last time, the buck stopped there. She took 10 passes (vs. the normal 5) just to be sure she got the tissue in question. Dense breasts, hard to get a good sample, not as big as she was hoping for (the sample, not the breasts; although the breasts are quite small, and getting smaller with each surgery!!) ... I had done the research by this point, and I knew DCIS was a (relatively) common diagnosis in these situations. I was prepared for that, worst case. They called a couple of days later when I was at check out in a Dept. Store. I answered the phone, as I wasn't expecting any significant news. Imagine my shock when she said DCIS with a microinvasion. Real live cancer. What?! The poor girl at the cash register was as shocked as I was.

Then I did all the research on DCIS with a microinvasion (thanks Beesie for all your info and research!). I was prepared again! I met with the surgeon, MO and radiologist. They are all great, and answered all my questions and respected me, just as I respect them. I told them no SNB based on a .5mm microinvasion, as I had done the risk assessment for me in my situation, and the risk of lymphedema for me is career ending. The surgeon was OK with that as we were expecting a .5 mm microinvasion; odds of that going to the SNB were very small (not impossible, I know, but very small). I knew the final pathology could be much worse, and I would take the required steps at that time. The final pathology showed 2 mm invasion (no longer micro) and 2 mm of DCIS. Margins were 5 and 6 mm. Doctor was still OK w/no SNB, agreeing chances of spread were still slight. Yay.

Which brings me to the radiation question. Which brings me here, where ALL of you are kind enough to offer me advice. I meet with my radiologist tomorrow to ask questions and get more info.

Brookside, thanks for letting me know you were on the fence, that you did the rads and you are pleased you made that choice. Great info. That's all any of us want, I think, is to finally make a choice and to be at peace with it.

Runor, no matter what, I doubt I'll be running a mile with carrots in my ears. But I LOVE that image. It made me laugh out loud when I read it. Still makes me laugh. Thanks!

(Apologies for the length of this post. It is cathartic to write it all out!)