Wondering About Radiation Even when MRI and PET neg?

DebbD72 · February 2013

I am curious to know if anyone has ever chosen to NOT do radiation after having chemo when their MRI and PET came back clear showing no cancer left?

A little back round on me...

I was diagnosed in October with Stage 2 breast cancer in my left breast. (Right breast was clear after a Mamo, MRI and PET. ) The left breast had 2 tumors (I had self diagnosed the smaller 1 strangely and not the larger). The smaller was .65 at 3 O'clock and the larger was 1.6 at 1 O'clock on left breast. I also had a lymph node involved. They did a biopsy on all 3 and all 3 came back positive for cancer (Invasive Ductal Carcinoma). After a MRI (confirming the 1 lymph node) I also had a PET because of the metastic nature and sure enough the PET picked up another lymph node.

I went through chemo A &C (4) and then Taxol (4) every other week for 16 weeks before surgery. I handled that very well working full time as a teacher through it all.

I just had another MRI and PET both showing no tumors left and no up take, clear, nothing. I am getting ready for surgery (double mastectomy) and want reconstruction at the same time, however, now they are saying possible radiation. My question is radiation for what? Nothing is showing up. I realize there could be a cell or 2 there but I am doing complete mastectomy so that should get it all if nothing is showing on scans.

My question is has anyone else ever been in this situation or is in the situation now? Have you gone through with the radiation why? why not? I am curious. I am going for second opinion to Dana Farber. Just wondering how everything went if you did or did not go through with the radiation after surgery. If you did radiate how was the reconstruction process after radiation?

Thank you in advance for the advise and support. :-) </p>

CameraKim · February 2013

Hi Debb, I'm in a similar situation. I just finisheds chemo and had my MRI last Friday. I won't have my results until this Thursday, but am hopeful nothing else shows up!

On my last chemo treatment, my MO told me that it has become standard for women with node positive BC to have radiation done as a precaution.

I have not had surgery yet, but at this point it sure looks like I'll be putting reconstruction off until after radiation.

Kim

pupmom · February 2013

Debb, if you haven't had an axillary node dissection they would want to zap all the remaining nodes to make sure no stray cells remain there. Even though you've had chemo this is just extra insurance. I had an ALND and they also did rads. The rads were primarily becase I had a lumpectomy. But along with my breast, they aimed the machine at my bc underarm to get any strays, even with 21 nodes being removed.

I also want to caution you about the results of MRIs, CTs and PETs. I had a CT and 2 MRIs before surgery, all of which indicated no nodal involvement. They don't always see everything.

stride · February 2013

PET scans are pretty accurate, but they can't pick up single cells that might be floating around.

I have personally known someone who never got the opportunity to have radiation and had tumors growing in her chest after mastectomy. It was not pretty. If your doctors recommend having radiation, I would suggest you take their advice.

stride · February 2013

Also, just to add, I had a mastectomy in November, a clean PET/CT scan in December and started radiation on January 16. So I'm right there with you! It was not an easy decision.

DebbD72 · February 2013

CameraKim:

Thank you for responding so quickly. :-) I appreciate your feed back.

Good luck with the MRI results. I know it is difficult waiting to find out such important results. I will keep you in my prayers and send good vibes your way. :-) Let me know how it all goes. :-)

DebbD72 · February 2013

Thanks for the information Yorkiemom. I appreciate all the input. :-) I will take into consideration everything.

DebbD72 · February 2013

Thank you stride for the information. Good luck with everything. I have to say they convinced me to do the chemo first and then the surgery and I thank them every day. When I was first diagnosed I just wanted the cancer out of me and I wasn't very happy when they suggested the chemo first. Now that the tumors are no longer prevalent on any scans I am thankful I went with their advice. i am sure the radiation will be the same way. :-) Good Luck with everything and let me know how everything goes. </p>

KSteve · February 2013

DebbD72 - Sounds like you've already answered the question in your mind. Just to reinforce it, I also had chemo first, no evidence of disease from the BMX or the lymph nodes that were removed, and then followed up with radiation. It was never a question as to whether I would do radiation or not. But you need to get all questions answered so you can be comfortable with the path forward. Congratulations on the successful chemo treatments! Good luck with your upcoming surgery. I'll be thinking of you. I was in your position a little over two years ago. And, just so you know, life is awesome again. You will get there too!

Hugs,

Kathy

Letlet · February 2013

Chemo is systemic treatment, goes through your bloodstream to kill whatever cancer cells may have been lurking in there. Radiation works differently, it is localized, targeted and specific. One of its main reasons is to kill whatever cancer cells that may have been left on the surgery site/ mastectectomy scar. This is to prevent ideally recurrence on the skin. Some people have had recurrence despite everything but cancer is never predictable, we wouldn't be on these boards if there was a cure . Its a personal choice for everyone, some have a higher risk than others. I was told since I was 31 at that time and had 6 positive nodes, it was strongly recommended. So I did, I burned horribly, horribly and sat on my couch for 6 weeks out of exhaustion but I have never looked back.

Jennie93 · February 2013

I had a PET scan before my surgery and it showed nothing in the lymph nodes. Then during surgery they took out 6 nodes and 3 of them were full of cancer. Later on a 4th was found to have microscopic cells. So, they say I need rads now. Bummer. Even though the last 2 were clean, they said it's no guarantee that there wasn't some more left behind. So we blast them now just in case. Anyway, don't trust a PET scan.

sundermom · February 2013

I also had a PET scan and MRI before surgery and both showed no node involvement; however, the first two nodes were positive on the sentinel node biopsy, so I had a ALND at the same time as my BMX. Additionally, I had two tumors in the same breast, only one of which was detected with imaging. I followed surgery with chemo and rads to the whole breast, axilla and collar bone nodes ( I can't remember what those are called) with boosts to the scar line. I really wanted to be done and going to radiation was an inconvenience for sure, but I viewed that (and my Tamoxifen) as extra insurance.

DebbD72 · February 2013

Thank you everyone. This is extremely helpful information.

I wish all of you the best and will pray that someday someone finds a cure for this horrible disease. I have known so many that have beat it and so many that have not. I am thankful I am here and that you all are also here with me. :-) Hugs and prayers. :-) It really helps knowing there are others in the same "boat" and it helps to talk it out. Thank you. :-)

addisonse · February 2013

I had a double MX in Nov 2012 with clear nodes and.clear margins. Traditionally I would not be a candidate for radiation, but I'm 25 and triple negative. These are both high risk factors ans because of that I'm going forward with radiation. Part of me is selfish and doesn't want to because it makes reconstruction more difficult and its just annoying to go every day. Then I smack that part of me in the face! Radiation is proven to cut your recurring rate by 2/3. So hello! I'm making the choice to live! We have these treatments for a reason. I'm going to throw everything possible at this disease.

dbm75 · February 2013

I had a lumpectomy and so radiation is a given. I start a week from this Thursday, on Feb 28. I had my planning session yesterday...CT scan, tattoos, markings and all. Am ready for this! No matter how easy or how hard it ends up being for me, I never questioned the decision to do radiation. I know the prevalent thought today is that I could have avoided radiation had I chosen to have a mastectomy. But no one, not one of my docs, recommended a mastectomy given my stats and the fact that a mastectomy wouldn't have been any more beneficial to me than the lump/rads treatment. So all that a mastectomy would have offered was a way to avoid radiation if I didnt want radiation or couldn't do radiation. But avoiding radiation wasnt an option in my mind. My mother went the mastectomy/no radiation route when she was diagnosed years ago. At the time she was told that radiation wasn't needed since she'd had the mastectomy instead of just a lumpectomy. But mom got a local recurrence years later, same cancer, in the scar of the mastectomy site. Doc told her it was undoubtedly a rogue cell or two left over from her mastectomy surgery years earlier. So radiation could have prevented her recurrence had she done it. So for me, I would still have insisted on radiation even if I had chosen to have a mastectomy. So a mastectomy would not have given me an escape route out radiation, so why go that much more invasive route if I wouldnt gain that benefit? No doubt I'd have opted for a mastectomy if my stats were different...if I'd had more than one tumor, a larger tumor, if my margins weren't clean, or had been previously radiated. But either way, I'm actually ready to get that radiation, to bring it on, to do its job on any little buggers that may still be lurking in there, as happened to my mom.

Shari0707 · February 2013

I am in similar sitruation.... except my positive node did not show up on I have two more weekly taxols to go.. My question to u all is the same....if there r no positive nodes after chemo and we r getting a mastectomy... R they still going to radiate... I know I had postive node before ( don't know for sure how many) chemo but if after there is nothing I n the nodes both my bs and onco think it would b overkill to radiate there if they r doing an ALND as well.... Any thoughts... Hopefully there won't be anything in the nodes come surgery time for me but now I am confused about radiation regardless.. I am young(31) so I would think they would want to b more aggressive... But all docs deem radiation unnecessary unless there is still something in the nodes.. I am so confused and don't know what to do...advice please!

DebbD72 · February 2013

Addisonse you are so brave. Thanks for your reply and the information. Good luck with everything. I will keep you in my thoughts and prayers. It sounds like you are very positive and that is half the battle. Stay that way and good luck! :-)

-Hugs Debb

DebbD72 · February 2013

DBM75 Thank you for your reply and for sharing your information and your mom's experience as well. It is very much appreciated. :-)

My tumors cover a large area and my only option in the left breast is mastectomy. I am rather larger (Double D) and since I do not want to be this large again, I would have to do breast reduction in the right breast so figured why not get 2 that match. I know it will not decrease my chances but I figure why cut into the good breast to reduce when I can just do both and be done with it. My tumor in the left breast was .65cm at the 3 O'Clock position and 1.6cm at the 1 O'Clock position. I also had calcifications around the tumors, although they did not believe those to be cancerous. So because of this lumpectomy was not an option. My 1 lymph node that was biopsied because it was "plump" according to the dr. that did the biopsy was positive and then the other one did not show up on the MRI it only showed on the PET Scan.

Thanks for all of the information and I will look at all the info before I make a decision. it is one of the most important I will ever make.

Hugs and prayers, Debb :-)</p>

DebbD72 · February 2013

Thank you for all the responses. I will be going with radiation after considering all the options radiation is the best way to go.

Good luck to all on your journey and THANK you for your honest comments and support. Very much appreciated.

:-) Debb</p>

CMBKCURLY · February 2013

I had a bilateral mastectomy, deip flap immediately, followed by chemo. I was not supposed to have radation- that's why they did the reconstructive surgery. After chemo, the doctors decided that it was a good insurance policy to have radiation. My doctor told me that you have a 39% chance of it coming back if you do not have radiation. I figured that the doctors know best, so I opted for radiation. Due to the rads, they had to start over on my reconstruction. I wish that I had know someone to ask at the time. If you have any inkling that you're going to have radiation...wait on reconstruction! If I had to do it all over again, and I had the same info, I'd still go thru it all again. Anything for the extra insurance!

melmcbee · February 2013

I had a bmx followed by chemo and then rads. If you are deciding to have rads according to what the scans show after chemo then remember that a lot of us had positive nodes that did not show up on the scans. I had a pet scan, CT scan, and mri that did not show my 8 positive nodes. It all boils down to what you can live with. For me the risks of the treatments were worth it to me as opposed to me worrying that I didnt do enough.

Wondering About Radiation Even when MRI and PET neg?

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