I had a very confusing phone call from my Breast surgeon last night . Plan was to do lumpectomy mid October but now she discussed me at tumor board with her colleges and all plans have changed .
Surgery will not be till Jan/22 after i have my 2 year mark of treatment and they want to move forward with surgery radiation to my breast maybe breast reduction and radiation to my bone Mets to make sure no remaining cells are in there sleeping i guess .
She said this will add many more years to my life . I am totally confused scared and a bit shocked that we are moving in this direction .
I know i should look at it in more of a positive way but was not prepared for it at all and need to process all this information . Had scans done mid august and it was all good . She said they are kind of treading in new territory here with woman doing so well with treatment at stage 4
Did any of you ever get pin point radiation to Mets ? Have a Appt with radiation doc on Monday so i guess ill find out more .
Any info is appreciated so i can make it thru weekend without going crazy
Anita
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Anitafazz
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Hey Anita, I am reading your post with interest. Why are they doing a lumpectomy and it sounds like your Mets are not active so why are they radiating them.
I am also Stage 4 with Mets to bones. I have been stable 4.5 years on Ibrance and letrozole. I go to MDA and there has been no mention of radiation to inactive bone Mets.
I hope there is a new treatment they are using on you and all of us will soon be benefiting from it too.
Hi Susan I guess it is new because they never mentioned it at any time to me either . I think that's what i was so surprised for it to go in that direction . I was ready for my lumpectomy but i guess they are thinking long term . I don't know what's going really .
Maybe this is a new direction they are taking and i hope it is a new way for all of us to add many more years to our lives . I am a strong believer in my team . My daughter had cancer 22 years ago and back then they did a experimental stem cell transplant on her after she relapsed and it saved her live . I was not sure at that time if i was making the right decision but i did .
i guess its my turn now to follow there guidance and hopefully i will get positive results .
I also have bone lesions ribs and back, my oncologist has only mentioned radiation one time for pain. I take letrozole daily along with Herceptin and Perjeta IV every three weeks. This has been working well for 6 years in December. Take care, Eva
Hi LucieI really don't know how many Bone Meets i have .I do believe its less then 5 . Yes she told me the radiation of those mets is to kill any remaining cells that are sleeping in there i guess if there is any .
My breast tumor shrunk from 3.5 to less then 1 cm . How did you do with surgery ? Was it painful? and how was the radiation ?
I am just glad to hear that other woman had this kind of treatment and im not a guinea pig. I trust my doctors but hey sure threw me for a loop on this one .
Now im even more stressed out over these next scans because so much is riding on them .
Maybe i feel better ones i see that radiation doc on Monday and he can explain a bit more on how this is going to happen ,
I have had 10 total targeted radiation treatments, 5 for each of 2 lesions that were found. One set in November, the second set in March. The lesions were small and were not causing any pain but my oncologist and radiation oncologist felt this would prevent them from growing and causing pain later. I was scared also as I never had radiation before. The treatments were fairly quick (about 10 to 15 minutes each) and painless. I was able to play golf after each treatment and have not had any residual side effects. I'm not sure I understand the change in plans for the lumpectomy though and the longer wait to have the surgery. I had read some articles recently that some doctors were going away from mastectomy and doing breast conserving surgery with radiation and were finding that was just as successful, but had not read that about lumpectomy. I would definitely have a serious discussion with your oncologist and breast surgeon to find learn more about this. Best wishes and hugs to you.
Hi I will still have a lumpectomy just with checking my lumph node and getting plastics involved for breast reduction if that's what i want ( which i always wanted to have done ) but not this way lol. Thanks for letting me know about the radiation part which im really scared about . Before i was diagnosed stage 4 we had this plan in place 2 years ago so i guess it will happen after all .
The reason for the wait is that she said most cancers come back within 2 years if they do so they want me to be at my 2 year mark in jan . I was not happy with that because i had my mindset on getting this done in the next few weeks .
Hi again,The surgery was fine. I can't remember even taking any painkillers after! The radiations are painless. You may feel like a sun burn after a month treatment. It all clears up in about 2 weeks when you stop radiation.
I really have no regrets. My breast looks fine. No scares.
Well of course it shows when I'm undressed, my breast is a little squashed underneath compared to the other.
I feel better having this tumor out.
Now, I can say I'm NEAD.
I must say I don't understand why your doctors are waiting 2 years to do the surgery. I was told it could be done as soon as Pet scan on mets was clear.
When I was first diagnosed in February of 2013 with breast cancer I had a mastectomy on my right breast and they put an expander in. They removed 2 lymph nodes and said they got it all. My genomic testing did not indicate a need for chemo or radiation. I almost wish they would have done some radiation at that point, maybe I would not be MBC. Anyway, 3 months after the mastectomy I had reconstruction surgery on the right breast with an implant and reduction on the other breast so they would match. The plastic surgeon did a great job and I even look ok in a bathing suit. I think your lumpectomy will go well and try not to be afraid of the radiation to your bone mets. It really was easier than I thought. I don't blame you though for wanting this to happen sooner. I would want to get it done with. I hope you get some answers that make sense to you. Hugs and prayers
I too had a low genetic score in 2012 and wondered if I should have had radiation when it came back in one spot in 2019. My surgeon said, trust me, it was not necessary. Today it would not even be considered.
That is interesting that your surgeon said the radiation would not have been considered today. When I first started with my oncologist here in Florida I was asked if I had radiation after my mastectomy as apparently there were some trace cells on one of the lymph nodes they removed. When I said no, it was implied to me that should have been done. My breast surgeon was the head of breast surgery at the hospital I went to and does lots of research and publishes many articles about breast cancer in addition to being a survivor. I trusted her and my oncologist to do the best things for me, but they did not recommend radiation or chemo based on my score which was a 10. I don't really know if it would have made a difference in the long run. I think this diagnosis is just something that was predetermined for my life and I just have to move forward and do what's best now. Sending you some hugs and hope you are doing well.
The treatments are making great strides. I’ve not heard of this, but I don’t think they’d do something risky. It sounds like they are still planning surgery (no need to reconstruct if they aren’t taking out residual cancer…) but adding the radiation. I had gamma knife (pin point) radiation for brain mets. Seems to have worked.
relief! Yoou have another appt with your doctor or someone he would suggest to sit down and thoroughly explain this to you. It islikey the very best treatment for you but if it were me l would be unable to proceed wit u out understanding this better. I m a nuse practitioner and have had MBC for almost 4 years. I don't have enough information about hi or to give you any kind of intelligent answer. The good news is that a tumor board normally has the very best docs on it (surgeons, oncologists, pathologists, researchers, possibly others) who give a recommendation based on the case presented to them. You deserve all the information you need to make an Informed decision. There is no cure - You get to say yes or no to every treatment option. A second opinion is also always an OK thing to do for yourself. Good luck, wish you the best of outcomes. Let usknow how you are. ❤🌺❤
Hi Anita ! Take heart. I just finished Cyberknife pinpointed radiation on an open tumor which yielded OUTSTANDING results. I sure wish I did what your doctors are suggesting 2 years ago when I was first diagnosed with a lump on my right breast. Had I known then, what I know now, I would have NOT done a lumpectomy initially. I did however have a lumpectomy in March of 2019 removing 4 lymph nodes under my armpit. They then followed up with 4 months Chemo and 2 months general "boob fry" radiation. Thought my right girl was going to fall off. All of this hulla baloo ended in Nov 2019. I thought I was cancer free ! ONLY to find out that the tumor came back in the PRECISE location as the lumpectomy. Now I'm MBC. Boy was I upset. Lumpectomy shakes up the tumor cells and if they don't get them all, whala, you're back to square one. I highly recommend precision targeted radiation. I just had it done in August to kill that tumor that came back and my latest petscan said that puppy was eradicated. I'm 57 now but had I had the opportunity to get targeted I may have said "to heck" with the lumpectomy. So I'm excited for you if you go the pinpointed radiation route. The results are phenomenal ! Blessings and Best of Luck !
I agree with NPmary about the value of input from the tumor board! And I think it shows that your onc values input from other knowledgable doctors and isn't rigid in her thinking about treatment, which I see as a big plus. I'm a long timer with MBC, 17 + years, and have only radiation very recently for a pair of tiny brain mets, stereotactic rads, just one treatment and found it very easy to go thru. I've had two lumpectomies, both on the right side, and found those procedures to be quite tolerable. I have heard that with a very few bone mets that radiation can kill off the cancer cells and offer a "cure" for some of us. but all this is so highly unpredicable and individual. I hope you will make decisions that you have peace of mind about!
Hello Friends Went to see that radiation doc yesterday and it was a complete waist of my time . He tole me that him doing radiation on my Mets is not necessary and pretty much said i would have to radiate you all over and it would do more harm then good . Was not impressed on how negative he was at times pretty much saying that i have cancer cells in my blood stream they don't see and i will have new bone Mets it will just be a matter of time . To come see him when i have pain or after i have surgery if they want to go that route . I felt totally defeated and angry because i feel like a problem that gets handed off to everybody and NOBODY is telling me why or what's going on . My Onc wont get get back to me and my surgeon is not texting me back either
Why is removing this lump such a big deal . I'm stressed and i doubt my future even more now with all tis . I feel like they know something i don't and just waiting for the ball to drop .
Im sorry ladies for being so negative but that's how i feel today . I'm to the point to say the hell with it and not do it at all !!!!!
I am sorry Anita that you are going thru’ this and feeling this way , but I think you at least deserve a full explanation from your onc and surgeon . I would email their secretaries and ask for more information regarding the change in treatment plan and for the opportunity to ask questions , either a face to face appointment, or a virtual appointment, rather than via a phone call , and have someone with you and taking notes . Keep strong ! Sending love x
I totally agree. You need a much better explanation of all of this so you are not stressing. Tell them that stress breeds cancer, they are stressing you out, and they need to concisely and completely explain what is going on! And call out the radiation tech who spoke to you like that. Way way out of order!
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