CALLING ALL STAGE I SISTERS
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I was not offered partial breast irradiation, I believe because of my age. I considered asking about it, just on the principle that the minimal effective invasive treatment seems like a good idea.
But from what I could tell from my own research, external partial breast irradiation often has worst cosmetic results and has not been proven to have equivalent medical results, let alone better ones. My radiation oncologist also assured me very seriously that there would be no radiation to my heart or lungs.
Now, your tumor is much smaller than mine, and in your left breast. And you may have other health issues that are impacting treatment. But I guess in your place the first thing I'd want to know is whether the radiation oncologist was confident he could do whole breast radiation without hitting my lungs and heart. Then, I'd want to hear whether and why they would consider partial breast irradiation an equivalent alternative to whole breast. If they can't explain to your satisfaction, I think that would be a good enough reason to for me to go with the tried and true whole breast radiation option. (Disclaimer - I'm just another layperson).
(To me partial breast irradiation seems like the worst of both worlds - the drawbacks of the limited treatment area associated with intraoperative partial breast irradiation but the hassle and side effects of the regular whole breast radiation. Unless there is concern about radiation to hearts or lungs, I would be pretty wary of it. But I am a complete layperson and this is only my impression, and I'm very glad to read other opinions and experiences).
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Hi Cindr: my tumor was larger than yours and I am having total breast radiation on the left breast. They did a CT scan before to see where my organs were to calculate the angle for the radiation to avoid touching any internal organs. I looked at their computer modeling and I could see how they were having the radiation beam at an angle so that it was just on the breast. You should talk to your RO about your concerns, they were very patient with me wanting to look at their computer modeling before the radiation treatment started.
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Cindr, I had a 12 mm tumor in my left breast. It was next to (but not attached to) my chest wall. I had 15 of my whole breast rads treatments face down. They attached a ramp to the treatment table, with a hole for my boob to dangle through. Gravity pulled everything down, making it easier to avoid my heart and lung. It was a little awkward climbing on and off the table, but totally doable. The last 5 treatments were boosts to the tumor bed, which were done face up. The techs said not every facility is set up for face down treatments, but it could be worth asking your doctor. Good luck!
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Cindr I had partial breast or the boost through IORT during surgery and followed that up with 15 whole breast sessions. Mine was on the left side using a Deep Inspiration Breathe Hold (DIBH) technique to help spare my heart and lungs. I think my age was a factor in my RO wanting to make sure we covered all our basis.
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Hi Salamandra, thank you so much for your post! I realize your a “layperson” 😊 but it is so helpful to hear different opinions from women who have been through this. I starting to lean towards hypofractional whole breast radiation. Have you heard of this? I’m a little worried about partial- what if there’s a rouge cell somewhere in my breast that they miss! 😳 Thank you again for your post.
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Hi Salamandra, thank you so much for your post! I realize your a “layperson” 😊 but it is so helpful to hear different opinions from women who have been through this. I starting to lean towards hypofractional whole breast radiation. Have you heard of this? I’m a little worried about partial- what if there’s a rouge cell somewhere in my breast that they miss! 😳 Thank you again for your post.
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hi Momsgirl and Greenharbor, thank you for your help! The repliesI’m receiving seem to be confirming my thought that whole breast radiation is the best way to go. Thank you to everyone for your thoughts and help in trying to make this difficult decision!! XXOO
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To MyMomsGirl & Green Harbor -
My radiology/oncologist never offered me the option of the face down procedure or the deep inspiration breath hold. I found this out on my own when reading about better ways to give radiation to the left breast. It was on the first day of radiation Sept 4th, 2018 that I asked about these procedures & if I could try them since I was worried about my heart & lung. He told me they weren't set up for those procedures but would think about trying them in the near future. They also told me that I definately will get some radiation to my lung & heart!!! Now just another problem to worry about down the road. 🤔
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Cindr- Sorry you had to find yourself here. I had whole breast radiation, 22 session and the last 4 were boost. Mine was on the left side as well, my Radiation Oncologist was great about showing where everything was lined up and it would not affect my heart or lung. She initially thought I would have to have the first part of my sessions face down but after looking at the CT scan, she assured me it would be fine to do them all on my back. It made me feel more at ease when she showed me the films as well. I didn't have a whole lot of side effects (thank goodness), it was like a bad sunburn, some swelling and towards the end I did have some heartburn. I did not have a lot of fatigue but I tried to stay busy and I think that helped.
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Hi Cindr, I'm glad it was helpful!
I did the hypofractionated schedule. I think it's becoming more and more common, so people don't always mention it specifically.
It's what my doctors recommended, and from what I could tell, for that they actually do have research that medical and cosmetic outcomes are equivalent to the long schedule, and compliance is higher so the benefit is greater overall.
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Welcome to the club no one wants to be in. Lol. For myself: Stage 1, Grade 3 DCIS. I had a left side mastectomy with reconstruction in Nov. 2018, pathology came back with bad margins so a complete mastectomy in December 2018. That time pathology was good so oncologist ordered 4 rounds of TC chemo. I am starting round 2 in a week. Lymph were cleared during pathology.
I am a wife (married 2002), mother of 3 and fighter. Nice to meet you all.
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Hi Cindy. Once the lymph pathology comes back a path of treatment will be more clear. I think it's too early yet but I understand this waiting game drives you nuts. My oncologist had the best line.... this was it. Cancer has 3 steps. Step 1 is Diagnosis, that is tests and more tests. Step 2 is Surgery. This isnt for everyone but generally they cut it out if possible. Step 3 is treatment. That is radiation, chemotherapy, hormone therapy etc..
Good luck and kick ass. You are not alone and you got this!!!
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Hi there all. I am finished with surgeries (finally). It has been a long year and a half. I was initially diagnosed stage 1 but after bmx I got “upgraded” to stage 2. So I started here with you ladies. I am doing well. Fighting side effects from my lovely daily pill, but I really can’t complain too much. I am back at work full time (and then some!) and besides staying tired I feel almost back to normal. Until the hot flashes. And night sweats. And leg cramps. But really am doing well. Hope you all are fighting on along and making good progress towards kicking cancer to the curb.
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TaRenee your post made me smile this morning! Glad to hear that you are doing well and starting to find your life again. It truly is some kind of journey isn't it?
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Thank you for all your replies!! So very helpful to see gals with the same DX and steps you all took!! Waiting for results from my sentinel node surgery. They took two nodes, hoping to hear Monday! Leaning towards hypofractional whole BR. I just think it would give me more peace of mind. Even though I have been offered partial BR??? I HATE making these decisions!!
Love to all of you!! This is me climbing the cancer mountain and kicking cancer in the A_ _!! 🧗🏻♀️
XXOO
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Hi TaRenee! So glad you are finally done with surgeries. I think I had a simpler path than you but I am now five months out from surgery and 2.5 months out from radiation and surprised by how tired I continue to be. It's pretty frustrating and not good for my work.
Cindr, good luck with your decision! I really believe the doctors would not offer you the choice unless they believed they were both good options, and if they didn't see an easy way to choose between them, no wonder it's a hard choice for the patient who has so much less knowledge and experience with cancer! Whatever you choose, it will be the right option. Love the graphics!
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I am 68 and was told that it was optional with a oncotype of 31..definitely different at different ages.
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Cindr - I had 20 rads, 16 whole breast , 4 to tumor bed, on the left. Used the deep breath hold. The techs can see if you have taken a deep enough breath and do not do the rad treatment unless you have. Back in 2017, I wrote a long message about rads that included my experiences and others. Please PM me if you would like this info.
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TaRenee - glad to hear you are doing well!
Cindr - Keep up the fight and keeping you in my prayers
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Hi Cindr,
I too had a lumpectomy in February and am having sentinel node surgery on Wednesday this week. They found ILC during the pathology for the lumpectomy for DCIS. I too was DCIS grade 2, but in my right breast. I've talked with the oncologist for radiation but he hasn't given options yet. We're waiting for the path from the sentinel node surgery and the Oncotype test. I hope all goes well with your surgery and path results. XOXO ((hugs))
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Hi 60notpretty ( although I am sure you are pretty!) 😊
I had my sentinel node surgery one week ago. 2 nodes removed. Praise God, the nodes were negative! My issue is I have a large lump under my arm from the surgery. Very tender and hard to the touch. Not sure what’s going on! Going to see my BS tomorrow. Hoping this is nothing serious although it’s definitely gotten worse since his surgery. I’ll also be seeing MO tomorrow to discuss hormone therapy Really not wanting to go down that road. But everyone is telling me I need to at least try, so I will 😃
Seeing my RO next Wednesday, hoping they will do a CT and start planning for hypofractional full breast radiation. 🙏🏻🤞🏻 I’m worried this lump may slow down my treatment. Just feeling like I want to get all of this done and over with so I can get on with my life.
Hoping your path comes back negative.
Cindr
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Cindr
It is probably just fluid which will absorb into your body. The body doesn't like empty spaces and will fill it with fluid. After a time (unknown for each person) that fluid will re-absorb into the body. It is normal, but should be looked at by your BS. I believe it is called a seroma.
Good luck with your MO and the hormone decision.
Jules
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Hi Jules,
Right! It’s on my BS today and it was a large Seroma- 2 pockets. She had to drain it. Feels better. I guess it’s a 50-50 chance it will come back keep my fingers crossed 😃🤞🏻 Hoping and praying this doesn’t slow down the beginning of RAD! I really would like to get this done and over with so I can get back to my life!! 🤪
Loved the MO is met today! So glad I got a 2nd opinion. She wants to put me on an AI after RADS. She’s very willing to work with me find the right medication for me. She understands how nervous I am about going on a hormone inhibitor 😳.
So onward we go!! Wishing you a fun filled weekend!!
Cibd
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Hi Cindr,
Had my sentinel node surgery on Wednesday and they removed 2 and both were negative
I go back for follow-up on Thursday for full path results and then on to the radiation oncologist. I'm so ready to get this over with too. So glad they got the pockets drained for you. I know it feels better. So far, so good on mine. I'm back to work today but trying to take it slow. Let me know how it goes moving forward. ((hugs)) to all.0 -
Hi Cindr,
I'm back from the BS and path results show 0/3 clear. Now on to RO tomorrow. Hope you are doing better ((hugs)).
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60notpretty- congrats on your path report!
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Thank you CindyNY. I went to the RAD doc today and still doesn't have the oncotype tx back. So still a hurry up and wait game.
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Gosh CindyNY,
Our dx and treatments are almost identical. My dx was at 60 and onco score 18. The only thing really different is yours was left mine was right side. Please keep me up on how it's going for you. I'll be with you in thoughts. ((hugs))
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I'm new and stage 1 . I'm waiting for my Oncotype results and I hardly see anyone on the forum that is grade 3 (3+3+3)with ER/PR positivity. I'm hoping for a low but I've been told it will probably be intermediate or high. My biopsy came back Her2 equivocal and after mastectomy the pathology came back Her2 equivocal but both times negative thank goodness. My Doctor told me on Oncotype that they won't test Her2 again, is that true?Also my tumor was upper inner quadrant and was wondering if anyone else had similar results? 1.5 cm was my tumor. I have family history but negative for the BRCA gene. Thank you
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Lyndalysa my tumor was similar in size, inner quadrant ER/PR positive, Her2 negative with family history and no genetics, but Grade 2. I was worried about a high Oncotype because I think the doctors were trying to come up with a reason why I was within 2 months of the same age as my mother when being diagnosed with BC. In fact my first MO was talking chemo in my first appointment, before my Oncotype. Well he was wrong, I was a 9. Good luck to you and remember everyone is different. And btw I switched MOs.
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