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DID YOU OPT OUT OF RADIATION?

mopar
Posts: 1950
Joined: May 2003

Just wondering if any of you ever chose NOT to have radiation?  Clinically, I'm a Stage 1 Invasive Lobular Carcinoma.  Going for lumpectomy on December 3.  They have recommended radiation (Monday thru Friday, for 6 1/2 weeks) afterward.  I'm on the fence on this.  Of course, they will also test several lymph nodes, which as they say, will make the determination for chemotherapy.

I'm a 14 year OVCA survivor.  So, I'm not exactly knew to this.  But really unsure about the radiation.  You wonderful ladies have responded to my earlier posts.  I am grateful for all of your advice.  Just struggling with this decision.  

Thank you!

Monika

 

TraciInLA's picture
TraciInLA
Posts: 1857
Joined: Jul 2009

Monika,

Radiation is really, truly necessary after lumpectomy, because there's no way for a surgeon to be 100% certain that he/she removed every single cancer cell -- you don't want any stray cells that are too small to be seen in surgery to decide to go on a "road trip" out of your breast and into your bloodstream.

All of my doctors say "lumpectomyplusradiation" like it's one word -- radiation is completely integral to the decision to have a lumpectomy.

I'm not a medical professional in any way -- but, if you were my sister or mother, I'd be pleading with you to go through with radiation.  I had bilateral lumpectomies in 2009, followed by 4 rounds of chemo, then 33 days of radiation to both breasts.  I got through it, and you can too.

Traci

disneyfan2008
Posts: 5437
Joined: Oct 2010

I had llumpectomy 5 yrs ago followed by radiation and just finished tamoxifen. I never thought of NOT having radation-I just did it since suggested. I did  not have ANY side effects, burns, chapping, fatigue etc (Happy to say)

 

Denise

24242
Posts: 1417
Joined: Mar 2001

Even though I had stage 3 with lymphnode involvement it was said benefits from my having radiation thereapy were little adding another 2% to life expectancy which didn't seem like allot after everything.  But when I look at my initial reaction to my terrible diagnosis after trying to convince the medical community for some 10 or more years I was ill I had come along way.  I remember telling my mother at stage 3 that maybe I wouldn't do any treatments because I was already very ill and couldn't imagine having to get worse and go through more.  My own mother made it clear to me I did not have a choice though I too begged to differ, it was my God given right to make my own choices.  She was right, I had a son who needed the one constant in his life and that would be me a single mother who was realistic and came by hard work honestly.

So I guess I decided that if I was going to do anything then I had to resign myself to everything and try to get through it all practically unscathed.  That I did and I am not going to say every story is easy because we are all different.  It amazes me those who can still work and those who don't suffer the side affects when I was riddled with them all.  Would I do it again, YES I would even the radiation because I wanted every percentage of life there was since beginning this thing.

I am the stat that should give us all hope since less than 20% actually survived my form of the big C.  I was part of a study all those years ago and actually just a couple of years ago the stats were put out.  Stage 3 IDC with Triple Negative and 11 out of 21 positive nodes.  Seriously I had been exhausted and catching everything for more than 10 years finally being diagnosed with stage 3.  Then I heard a friend who was dying from lung and bone cancer diagnosed at stage 4 and little time left that breast cancer sympton found was hip pain.  Oh yes tired sick with hip pain described me since about the age of 26 and I actually use to laugh about how I would be the youngest hip replacement recepient since pounding the pavement in manufacturing for more than 30 years.

We never know what will happen to us and yes there are no gaurantees but I decided to give it all I had if I was going to do anything or one thing...  I have learned if we do not have hope we do not have anything and for now HOPE is becoming my four letter word replacing some of the others I have learned to use.  I too found my way here and seems we survive amazing things.  Tara

sandra4611's picture
sandra4611
Posts: 121
Joined: Sep 2013

I chose a mastectomy rather than lumpectomy with radiation which is the most common form of treatment for my kind of cancer. When I looked into the side effects of radiation to other parts of my body on the John Hopkins, Mayo, and MD Anderson websites, I decided that since I had a choice of treatments that would accomplish the same thing, losing a breast to avoid radiation was worth it. Not everyone has a choice.

Although some of the side effects are temporary, the damage to your heart, for instance, is permanent. I have a bad heart already. Every day on BC.org I read stories from women who've had to have reexcision because their lumpectomy surgeon didn't get good enough margins. Others end up still having a mastectomy after one or two lumpectomies. I just didn't see the point of trying to "save" my breast (for what?) and in fact had a prophylactic mastectomy on the other side too. Not everyone would have made the same decision but it was the right one for me.  I could not deal with the worry that if I had a lumpectomy, the surgeon might not get it all or that I could develop breast cancer in the other breast in the future. It's a good thing: pathology on the "good" breast showed it had cancer too that had been missed on two mammograms and an MRI.

If I develop cancer again and radiation is my only choice, I'll do it. But since I had another option, it was a easy decision to pass on radiation.

Doe1504
Posts: 94
Joined: May 2013

I had a bilateral mastectomy and so far 14 chemo treatments, 2 to go. I had no lymph node involvement and was offered rads. I chose not to do rads because of the mastectomy and chemo.

If I had instead had a lumpectomy, I would have done rads.

Good Luck on making your decision.

Dolores

New Flower
Posts: 4065
Joined: Aug 2009

Hi Monica

Ladies gave you enough information to consider just my two cens

there are choices for Stage I (small tumor, no nodes) treatment, however they are consist of several steps: lumpectomy with radiation + antiestrogen therapy = one treatment choice.

a mastectomy with antiestrogen is another. In oncologist mind they are undivided and represent a single treatment plan. Please talk to your doctor before making any decisions.

Good luck 

mopar
Posts: 1950
Joined: May 2003

I so appreciate all of your insight on this difficult area of decision.  New Flower, I have talked to my doctor, as well as received a second opinion.  I must say, though, that the second opinion came from a group of doctors in the same hospital system.  I didn't expect much of a difference in approach, but the forum was offered to me and was still quite informative.

Their treatment advice: lumpectomy + radiation + aromatase inhibitor.  I had hoped to see my homeopathic doctor whom I haven't seen for years, to get his opinion.  However, it would all be out-of-pocket, and unfortunately I'm not in a position to do that.

Lymph nodes will be removed during surgery.  That will determine the chemotheraphy approach.

Well, again I appreciate everyone's input.  Prayers to all of you!

Monika

 

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Monika, I wish you best of luck with whatever route you decide to take. We miss you very much on Ovarian board.

Hugs,

Alexandra

mopar
Posts: 1950
Joined: May 2003

So thoughtful of you to post here for me!  I miss you ladies, too.  Haven't forgotten you, just trying to accomplish a great deal before my surgery (December 3).  I do check in on all of you from time to time.  I promise I'll be back.  

(((HUGS)))
Monika

 

24242
Posts: 1417
Joined: Mar 2001

I am in Canada and it was explained to me like this.  When they cut you open and drag the affected tissue through the opening they cannot be sure that the disease our kind of cancer hasn't seeded itself.  Like having a mastectomy does not ensure you will never have breast cancer again because they cannot get every cell radiation is often percautionary why it doesn't have that much affect on percentage of survival rate.  Now I was stage 3 with lymphnodes so that too has bearing on my case.  It too came with its own set of side affects for me but I am just grateful to be here and to have been able to see my son flourish.

Tara

sandra4611's picture
sandra4611
Posts: 121
Joined: Sep 2013

True Tara. It also depends on the kind of breast cancer you have. Mine was in the ducts on one side and the lobules on the other. It had not spread yet. The oncologist said the entire breast was removed with deep margins all the way around on both sides, so the cancerous areas were intact. 99% of my breast tissue was removed and also the fascia of the pectoral muscle. The remaining tissue does not contain any ducts or lubules and since my kinds of cancer HAVE to have ducts or lobules to grow, I cannot develop the same kinds of breast cancer in that tiny bit of remaining tissue. I have only a 1% chance of getting some OTHER type of breast cancer, but what i have is gone. The oncologist said there is no point in radiation or chemo because there is nothing left to kill. My lymph nodes were clear. Often they aren't checked in non-invasive cancer but I wanted to make sure. I willl get follow ups every 6 months but that's it. I don't even need hormone therapy for 5 years. Very lucky it was caught early enough to do this type of radical but effective treatment.

2ndxyvonne
Posts: 41
Joined: Nov 2013

In 2008, I was dx w/IDC Stage 1B (lump 1.6 cm.), Her2 pos, I opted for modified mastectomy (left Breast), 1 of 9 lymph nodes involved.  I did not do any other treatments. I was comfortable with that decision.  Last month, I was dx with recurrence, same side, now with mets involved.  There are just no guarantees,  and I still don't regret or second guess myself on the decisions I made the first time around.  Do what you feel comfortable with and do listen to your doctors,  cancer is their expertise.  Good luck!

2ndxyvonne
Posts: 41
Joined: Nov 2013

In 2008, I was dx w/IDC Stage 1B (lump 1.6 cm.), Her2 pos, I opted for modified mastectomy (left Breast), 1 of 9 lymph nodes involved.  I did not do any other treatments. I was comfortable with that decision.  Last month, I was dx with recurrence, same side, now with mets involved.  There are just no guarantees,  and I still don't regret or second guess myself on the decisions I made the first time around.  Do what you feel comfortable with and do listen to your doctors,  cancer is their expertise.  Good luck!

Double Whammy's picture
Double Whammy
Posts: 2321
Joined: Jun 2010

If you don't have it, buy Dr. Susan Love's Breast Book.  You are not new to cancer so it should not be overwhelming.  What I read about lumpectomy and radiation treatments was pretty interesting.  She talks about the pathology of breasts removed by mastectomy and that 40% of the time there is cancer elsewhere in the breast, at least 2 cm. distant from the original tumor.  These small lesions would not be detectable on mammogram nor to the naked eye and, of course, with mastectomy, they're gone.  In the breasts of women with lumpectomy, there is no way to know whether there are any other small clusters elsewhere in the breast, even with clear margins.  Left alone, they will grow.  However, these minimal cancer areas will usually be destroyed by radiation and this makes lumpectomy + radiation as effective as mastectomy for most women.  She says for ductal cancers, if there is a lot of DCIS associated with it, (or EIC - extensive intraductal components), this makes cancer elsewhere in the breast more likely.  About lobular cancers, she said it is often difficult for surgeons to get the entire area because of the way lobular cancer grows, so radiation is important.   

No one explained breast cancer and treatment options to me like this book does.  I highly recommend it to anyone who wants to understand a lot about all types of breast cancer, environmental factors, diagnosis, treatment, types, etc., etc.  I didn't read it until I had completed all of my treatments and while I really wish I'd had it prior, it confirmed that my decisions were good for me.  I had lumpectomy + chemotherapy + radiation + hormone therapy for Stage 1B IDC in 2010.  I had chemo because of a hgh oncotype dx score.  I didn't want to do any of it!!

Good luck to you.

Suzanne

CypressCynthia's picture
CypressCynthia
Posts: 4011
Joined: Oct 2009

My younger sister had Stage 1 IDC and had chemo and hormone therapy but opted not to do radiation.  She had a local recurrence 5 years later - treated with surgery and radiation.  She was also put on arimidex (she had done 5 years of tamoxifen).  The recurrence was about 10 years ago.

She regrets not doing radiation and is angry that her physician for not pushing it.

RE's picture
RE
Posts: 4622
Joined: Feb 2004

Hi Monika, 

Not only did I not opt out I ended up having more than is recomended because it came back.  I was a stage 2a and had six sessions of chemo and 6 weeks of rads after having a lumpectomy.  They took 31 nodes and found no evidence it had spread to the nodes, however I did not want ot chance not killing everything.  I have to tell you my cancer came back 6 months later in the senitinel node and in my chest wall.  I had to then have another 18 sessions of chemo and my rad doc highly suggested I have an additional 10 weeks of rads which yes is a lot and there were things to worry about, but I wanted to do all I could to avoid it killing me since that is what i was tryng to do having madei it to my chest wall and sentinel node.  I was then cancer free for 9 years, it did return but my onco tells me the third cancer was a stand alone one not related to the other two.  If I had to do it again I would do it just as I ddi the first time. 

Treatment is such a personal issue but I will give you my take on what I view is.  I have history with Ovarian Cancer since I lost my mom to it after she had battled bc twice and stomach cancer once.  I would have the rad treatments just to be sure you have done all you can to kill this nasty beast that continues to attack you. 

Whatever you choose to do I wish you only the best!

 

RE

 

 

Jennifer1961
Posts: 137
Joined: May 2010

I had a choice, mastectomy or radiation.  I chose mastectomy (bilateral).  Here's why.  I didn't want to go every day for 6 weeks, sounded exhausting.  Also, I was already disfigured from having a lumpectomy and radiation would have added to that.  If down the road you need to have surgery on that area it will be every difficult.  Radiated tissue does not respond well to surgery.  Consult with a good surgeon and your oncologist and make an educated decision.  That's my advice.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

The majority of the time, people who have a mastectomy  do not need radiation. It depends on the size of the clean margins, type of cancer, grade, etc.

Many people are under the impression that just because they have a mastectomy, they won't need rads. This is not necessarily true. There is always a chance that one may need rads after a mastectomy.

A mastectomy is not a guarantee that a person will not need rads.

Surgeons need to bring this fact up with patients more often. They don't know exactly what is going on until they actually get in there and start cutting.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Do some research and ask your surgeon/oncologist for information regarding ILC. From what I have read, ILC can be sneaky and hide from scans.

If I  had ovarian cancer and now breast cancer, I wouldn't be debating it. I would go for the rads. My thinking is that ILC is sneaky, and with only having a lumpectomy, I would get rads.

Your surgeon will know more when he gets in there. You will need to have clean margins, or may have to go back for another lumpectomy.

With ILC and a lumpectomy, I would go for rads. I figure I would rather do everything I can now to get rid of the cancer, then take a chance of some ILC cancer cells being left behind and grow in the breast, or worse yet, metastasize somewhere else in the body.

But ultimately, it is your choice. Read up on your type of cancer, get all the information you can from your doctors, cancer.org, breastcancer.org, MD Anderson's website, the National Institute of Cancer website. Be as informed as you can then make a decision.

You may also want to try breastcancer.org. The website is set up a little differently, as it is devoted to only breast cancer. There is a section/forum for ILC. I highly recommend that you check that forum and website out as well.

As a side note, since you are having lymph nodes removed, be aware that you are at risk for lymphedema in that arm and you should be practicing LE risk prevention: no needles (IV's, blood draws) or blood pressure in that limb. You will be at risk for the rest of your life.

Some women that I have seen on breastcancer.org, recommend that you get measurements done BEFORE surgery by a certified LE therapist. That way IF you should develop LE after surgery, there are presurgical measurements to compare to.

 

mopar
Posts: 1950
Joined: May 2003

I truly appreciate the insight.

Returned home yesterday.  Surgery went well - lumpectomy and 2 lymph nodes removed.  Now we wait for pathology (clear borders and no lymp node involvement).  Most likely I will go with radiation.  Seeing the doctor next week for a post-op check and the next step.  Did not do well with the anesthetic and meds, so they kept me overnight.  Sure glad I stayed - still trying to get out of this fog.

Thank you for all your help, ladies!  

Monika

 

HaMich
Posts: 1
Joined: Oct 2014

I had a lumpectomy for DCIS, a small amount of invasive was found on the first surgery the second 2 surgery reveal no invasive but 5 out of 16 blocks positive for dcis and the 3rd surgery no invasive and clear margins dcis 4 mm and .85 .

I really don't think radiation is nessary but my oncologist says its standard of care :( I'm not taking the tomoxafen either, I consulted with a holistic oncologist that put me on Myomin, DIm quercitin and rutin. I'm really confused.

I don't want a reocurrance.

Did I mention I was a very heavy Beer drinker "ESTROGEN" and now drink very modestly (glass of red wine) if at all .

anyone have any reccommendations ?

 

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