Anyone choose to NOT have radiation?? after a lumpectomy??

hezmyrock

Anyone choose to NOT have radiation?? after a lumpectomy??

hezmyrock

I am so wary of having radiation-I have heard about the side effects for years. There is even a current study going on right now, as to whether selected patients with clear margins and nodes, actually NEED radiation. I am having a tough time deciding, and was wondering if there was anyone out there who chose not to go through with it. A part of me totally wishes that I would have had a masectomy and then I wouldn't be having this dilemma. Everything just went so fast, I didn't really have time to think.I was diagnosed on a Friday, and surgery on Tuesday-My surgeon strongly recommended a lumpectomy because of my age 39- and then the new 5 day 2x a day radiation. I just went with it-I just wanted the cancer out of me.

My tumor was 1.1 cm-was poorly or 'less' differentiated. He had to cut so close to the chest wall cavity, that I am not able to do the 5 day rad. 

My nodes and margins were clear.

Anyone out there who may relate to my feelings, please let me know. I also have a very strong faith, and I had such a peace about not having rad. until today. My Dr so STRONGLY wants me to have rad.-I don't think he's ever had anyone have a lumpectomy without it-so how does he know of the outcome?? I am scheduled to see an oncologist tomorrow, and a radiology oncologist on Friday.

MarieKelly

I had a lumpectomy with single node SNB in 3/2004 at age 48 for a small (just under 1 cm) low grade IDC mixed with DCIS tumor but didn't have any radiation because I refused it. I also refused any hormonal therapy as well so the only treatment I've had was a lumpectomy with single node SNB and removal of the breast biopsy track. It's now 3 years and 8 months since my diagnosis and thus far, all is well per my yearly mammograms. 

Since your cancer was high grade/aggressive and mine wasn't,

making treatment decision comparisions between us is not a very good idea. I was comfortable making this decision primarily because of the cancers low grade and small size...and because my surgeon took out the biopsy track at the time of the lumpectomy. I probably wouldn't have made the same decision with a higher grade or larger tumor, but still would have avoided radiation any way I possibly could for a variety of reasons and probably would have opted for a mastectomy. 

  

Shirlann

Hmmm, with the cancer close to the chest wall, I would do the rads.  It is not bad and if the cancer returns to that location you are in big trouble.  The rads clean up the area near the cancer.  A huge help with one by the chest.

Just my opinion.

Hugs, Shirlann

PSK07

I have DCIS, so I'm in a different category altogether.   The doctor today referred to a just-released paper on radiation after lumpectomy, but I can't remember if it was just WRT DCIS or applicable to any stage.

As they told me, think about it, do the research, talk it over, get a second opinion (I did), talk about it some more, and then decide. An informed decision - especially one as crucial as this - is the best decision.

Whichever way you go, I wish you the best.

Pam

hezmyrock

What is a 'biopsy track'?

MarieKelly

A biopsy track is the area that a biopsy needle traveled through to get to and sample the tumor. When a needle biopsy is done, that needle is advanced through the breast tissue into the tumor to collect the sample(s) and then withdrawn back out through the breast tissue through that same pathway. If there are any tumor cells hanging on the end of that biopsy needle, they too are dragged back through and possible deposited along the way into that needle track area.  Surgically removing the needle track is done to minimize the possibility that malignant cells might have been deposited along the needle track as it exited the breast and so left behind to grow into another tumor.

Many surgeons don't concern themselves with this possibility and don't remove biopsy tracks during lumpectomy for a couple fo reasons 1) it's still controversial just exactly how frequently this "malignant seeding" actually occurs and 2) radiation after lumpectomy is expected to take care of any stray cells that might have been deposited in healthy breast tissue through this process. So, since the current standard of care calls for radiation

after any lumpectomy, most surgeons don't see the point in bothering to remove the track. But others, like my surgeon, do and make it a part of their routine lumpectomy procedure.  

hezmyrock

I wishhmy surgeon would've removed mine-it should be standard procedure for every Dr. in my opinion-I didn't even think about that.But I have a copy of my surgical report, and that is definitely not in there....

hezmyrock

Hi Shirlann-To get a good margin-my surgeon went close to the chest wall, what happens if cancer gets in the chest wall-is that harder to get out??

I would rather have a mastectomy than have radiation-the long term side effects are not told to everyone, especially when it is over the heart.

thanks for all your advice--

Mamasj

I refused radiation, but I also had Chemo. I was told, that radiation would damage the upper part of my lungs. I have COPD and can't afford any part of my lungs damaged. Sorry that you are going thru this.

May God Bless

Sue

Shirlann

Well, yes, there is not much they can do with the chest wall.  So I would get the rads, just so this won't come up.

Remember, the first shot at this is the best.  Screw this up, get a metastasis, and that is curtains.  Not curtains soon, people live a long time with mets, now, but no fun and no cure.

So go the whole way, and then, you will have no "what ifs?".

Hugs, Shirlann

hezmyrock

Hey Shirlann-just met with an oncologist yesterday and was shocked to hear that I need chemo! I thought my only decision would be to do the rads or not- but this is unbelievable. My tumor is poorly differentiated, and my HER2 was 2.3 which makes it positive- 1.8-2.2 is neg, and 2.3 (me) and up is pos. He also wants to follow it up with Herceptin- I have read so many terrible things about that drug-

Simone

I had a low grade cancer grade 1 with negative nodes.  The chief director of oncology told me that I should go under chemiotherapy, radiotherapy and hormonotherapy.  I read a lot on internet on serious medical sites and I learned that all breast cancers are different.  It means  that you always have to make your choice  taking in account  your own story and your own feelings.  I choosed not to take chimiotherapy but even if it was not necessary from my point of view, I choose radiotherapy and to try hormonotherapy.  I had no side effects of radiotherapy except  being a bit tired sometimes.  Believe me that the rays were going very near my chest and bones as I have very small breasts. After one year I still don't have sides effects.  So before making your decision you have to be carefull and well informed: ask questions , talk to different doctors, read, listen to your emotions and ask yourself if you will be able to live easily with your decision .  With  all these informations  you will find the final answer which will be really yours.

hezmyrock

thanks Simone for your comment-I will continue to do research and get more opinions-God Bless!

hezmyrock

Hey Pam- what was the jsut realeased info on radiation you were talking about??

hezmyrock

Hi Mariekelly-

in response to your comment- I sort of feel the same way about having a mas. I actually didn't understand everything nor did i even have time to research anything-Found out on a friday, and surgery on Tues.-Now that i am thinking more clearly, I can do lots of research and see a variety of doctors, both medical and alternative, and jsut have faith and pray that there is no cancer growing anywhere else until I figure out what I should do- thanks for your thoughts!

Jen 

PSK07

You would ask me that!  I'm going to have to think - it was presented at the ASCO conference. From what the rad onc said, it is now much more difficult to advise no rads on anything other than the lowest of the low grades and very small DCIS bits.

Part of the problem is that they have trouble getting pre-menopausal women with intermediate grade cancers to participate in randomized studies. Again, though, I'm looking at it from my own DCIS knothole and it may be totally different for other than stage 0.

Shirlann

All the new gals please keep in mind, while mastectomies reduce by a small percentage your chances of recurrence, it is imposible to remove all of the breast tissue.  You can get a recurrence in the scar, the chest wall, and the tissue goes up your arms and around under your breast.  BUT, if you have a large tumor, or the tumor is multi-focal, you don't have a choice.  Just make a mast decision based on proper information.

I am not saying don't do a mast, at all, just do it for the right reasons.

And to another poster, if you want, you can surely try chemo.  If you feel you can't do it, then stop.  It is not jail.  You can do what you want.  Not real good to stop, but if the horror stories come true, just stop.

All of this is just my opinion, all of us need to listen, learn, read and decide what is best for each of our individual cases.

Gentle hugs, Shirlann 

Brenda_R

One thing you mention in both your questions about chemo and rads, is that you are afraid of future complications.  You need to keep in mind that if you need to ensure a "future", and one way is to do the chemo and rads.

Ultimately, it's your decision, but go into it with knowledge. 

rrobbie12

I' doing rads my was on chest wall its not hard to do 5 days a week you will be able to get in a routine even if you are still working. Think of it this way better safe than sorry.

twinkly

I chose not to have radiation or chemo with my lumpectomy three years ago.  My surgeon took a larger margin of tissue around the lump, stating that studies showed this to be effective.  I don't remember the details of this study.....my apologies.

My cancer recurred in the same breast two and a half years later (I really wish I had had an MRI with the first instance, as it has been discussed that this 'new' lump I found was older than the initial lump I found - and yes, mammo's missed them both times, even with a little steel bb taped to my skin to show them exactly where to look).

So, please make sure the cancer they have found is the ONLY cancer there.