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Is There a Timeline within which Radiation needs to occur?

I have a pretty large seroma in my breast near the tumor incision. I met with radiology Fri and she said it has to resolve before I have my "Planning Appt" as if they make all their marks and the seroma continues to get bigger or smaller, everything will be off.

I've had this at least for several weeks. I saw the PA at the breast surgeon's office last Mon. She was going to aspirate it but didn't have the right anesthetic (I can't have epinephrine). So she said if it got more painful to call and radiation would aspirate it.

I have no idea, obviously, to tell if this is getting bigger or shrinking. And the breast surgeon's PA said that they weren't going to monitor it, so how then does anyone know when it's "stable"?

I really don't want to have radiation until it's gone, even once it's "stable" as the radiation oncologist said that once you have radiation it "locks it in" and can never be aspirated and will never go down. She said she thought it best to let it resolve naturally rather than aspirating it due to the potential for infection, but I am worried about delaying the radiation beyond 8 weeks, which is what I was told was the max timeframe to start radiation.

The PA also said if it's aspirated it can just come back again. I really would like to see the breast surgeon, but I've been trying for 2 weeks and every time I call they say she's totally booked.

I called and made another appt for tomorrow so I can review with the PA what the radiation oncologist said and see what she says....

Anyone else go through this? I don't know if it's better to aspirate soon or wait a few weeks and see what happens. The radiation oncologist also said if it's aspirated, I have to wait a minimum of 1 week before I have the planning appt. Nov 9th will be 8 weeks since my surgery.

Comments

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited October 2021

    Maybe talk to the surgeon (rather than PA or radiation oncologist) about whether hot packs could help with the seromaat this point, and exactly how to use them. That really worked for my relative, whose surgeon advised it.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    Thanks ShetlandPony. The PA did advise that and I've been doing that, but yesterday I started getting these "shock" like zings in my breast that hurt like crazy. So I stopped today.

    I would like to talk to the breast surgeon but don't know how to do that without offending the PA or making it seem like I don't trust the PA. It seems like I can't get through to the breast surgeon even. She's in the office tomorrow. Maybe I'll just ask the PA if she will run by her our plan and see what she thinks. I just don't want her to think I don't trust her.


  • kasmid
    kasmid Member Posts: 1
    edited October 2021

    I have been dealing with a large seroma since my surgery on Aug.6, 2021.I had to return to the surgeon 5 times to have it drained. This was difficult since I had to fly to another island each time. I went from 120cc in the lymph node area, to 4 additional drains from 80cc to the final one on Sept. 30 of 5cc. Surgeon said she got as much as she could and the rest should resolve over time. Saw radiation oncologist last Fri. and he said they could start right away as soon as they got my oncotype score, assuming it does not indicate chemo (going in today to get that from med. onc.). He also said that the 8 week max is from one study and since then studies have shown up to 20 weeks is effective. He also said the seroma becomes like a thick gelatin and should resolve eventually. So I am over 10 weeks out. My advice is to insist you see the doctor because you need to get as much fluid drained as possible. Draining seems the surgeon's follow up duty or maybe I have been lucky. Do not worry about hurting the PA's feelings-your recovery is critical. All the best as you move forward.

  • pamep
    pamep Member Posts: 66
    edited October 2021

    kasmid, I had surgery the same day as you and am having my first RO consultation next Tuesday and getting my OncotypeDX score this Thursday to rule out (hopefully) a need for chemo. I have been worried about the effective radiation timeline as well.

    macdebbie: I read that rads before 20 weeks is acceptable. Glad to hear that confirmed and I will also bring it up with my RO. With referral and simulation, I imagine I am looking at a couple more weeks before getting first treatment.

  • ratherbesailing
    ratherbesailing Member Posts: 116
    edited October 2021

    Macdebbie, I also think you have longer than an eight week window, but this is really for your radiation oncologist to decide.

    Are the RO and the surgeon both at the same hospital? If so, I would suggest that you get them to talk with one another. I was shocked to find that my plastic surgeon had no idea I was scheduled for radiation, so was taking her sweet time on tissue expander fills. So best to make certain everyone knows what the plan is. They should work together to make the best plan for you you - you have enough stress as it is.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    RatherBeSailing. I agree, but it's not happening, and is falling on my shoulders. Maybe it's time to call the nurse navigator to try and coordinate or intervene. I called the Radiation Oncologist's office to ask how I know when the seroma is stable, and the message she relayed was I needed to talk to the breast surgeon. So back I go tomorrow to try and convince the breast surgeon's office that the seroma needs to be monitored. And I need the breast surgeon to weigh in on all of this, not just the PA. I'm not happy that I'm not able to get in to see the breast surgeon. Seems like you have the surgery, the post op, then off you go, not matter what "complications" you have from the surgery. You're right. It's very stressful, and it's unnecessary stress. I'm going to say something tomorrow.

  • Rubytoos
    Rubytoos Member Posts: 44
    edited October 2021

    I have the same issue. I had a lumpectomy and SNL and was doing OK but less than a month later, a mastectomy. With that I developed a seroma in my armpit. It really bothers me. It had mostly resolved but eight weeks out, I have started radiation therapy and now it has puffed up and is as bad or worse than ever. I asked my RO if that area could get hard or fail to resolve and he said no. I have to have a small revision at some point, and if it is still an issue I will have it addressed then. I decided it wasn't worth pushing my radiation therapy out any further, and given that the treatments seemed to cause it to "reactivate" anyway, probably just as well.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    Rubytoos. I am so sorry. I hope that it resolves. May I ask what made you have a mastectomy after your lumpectomy? Hopefully your seroma will resolve.

  • Rubytoos
    Rubytoos Member Posts: 44
    edited October 2021

    Macdebbie, I learned I had a local recurrence of what was thought to be a very indolent cancer (still is, but it did come back so maybe not so indolent after all). When I had the most recent lumpectomy, they found additional DCIS and another area of IDC, plus I have some areas of micro calcs that while stable, need to be watched. I had clean lymph nodes and no evidence of mets anywhere, but dirty margins on the two tumors. I just didn't feel like tempting fate with that breast any longer, too much was going on with it. I got an aesthetic flat closure and frankly it looks pretty nice. I am tall and reasonably lean, wasn't overly endowed. If ever I have issues with the other breast I will do the same.

  • alicebastable
    alicebastable Member Posts: 1,933
    edited October 2021

    I had to have an unrelated surgery between my lumpectomy and radiation. My RO was adamant that no more than twelve weeks pass between surgery and the start of radiation.

  • muska
    muska Member Posts: 224
    edited October 2021

    I think ideally, radiation treatment would start within six weeks after surgery. However, the benefits do not disappear if radiation starts at eight or nine weeks, they appear to gradually decrease.Read this summary https://www.dana-farber.org/newsroom/news-releases/2010/delaying-radiation-treatment-following-breast-cancer-surgery-increases-recurrence-risk-in-older-women/

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    I just found this article from Dana Farber which is kind of unsettling... wish someone had told me this.

    https://www.dana-farber.org/newsroom/news-releases...

    muska - just saw you posted this too, thx. It says there's a 19% increase in recurrence after 6 weeks. But yes, I did see that it's gradual.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    Rubytoos, I don't blame you. I would have done the same. Best of luck to you.

  • alicebastable
    alicebastable Member Posts: 1,933
    edited October 2021

    The article states "For the overall group, slightly more than 4 percent of the women experienced a local recurrence. The risk increased to about 5 percent, approximately a 19 percent jump, when the surgery-radiotherapy interval was longer than six weeks." So it's a 19% jump, but still just a 5% risk of recurrence. It's also an article from 2010, with the study covering years prior to that, I think it said ending in 2003. I'd like to see a more current study, and information on advances in radiation techniques since that time.

  • redhead403
    redhead403 Member Posts: 65
    edited October 2021

    My RO said 12 weeks as well from surgery to radiation

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    redhead403. Are you having chemo also?

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    musk, yes I saw that. I just wanted to give myself every chance to not have a recurrence.

    I wish I had known about this before now. My MO appt really messed things up, as it was 3 weeks after my surgery and my BCS told me that I MO is the one to give the green light to RO since it is dependent on needing chemo or not, which I didn't.

    In hindsight, it's too bad that MO can't just call the patient and say "no chemo needed, you can go to radiation" and meet with the MO at some point during the radiation. I have no idea why my MO booked my appt 3 weeks out and didn't know enough to realize that would thrown the whole RO schedule off.

    It's too bad there isn't some "coordinator" that manages all of this scheduling because someone being new to all this, how are they supposed to know?

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    PamEP, let me know what your RO says about timeframe for radiation therapy. I'm going to call mine today and clarify and will post since a lot of it seems to be based on age and for people who did not have chemo.

  • pamep
    pamep Member Posts: 66
    edited November 2021

    My MO also delayed my start of radiation and when I asked about timing he said rads could be performed within a year. My hospital does not have a coordinated team, they have individual practitioners who refer patients at each step and then the patient may need to advocate for timely care. They are booked up now due to Covid-19. I called both my MO and RO to get an appointment scheduled after I didn't hear from them. These are general cancer oncologists, not breast cancer specialists. My surgeon is a breast specialist and she was always pressing to have treatment scheduled and completed. This is becoming a Steam Room topic for me,

    Yes, macdebbie, I will post my RO's advice on timing. I would imagine tumor staging and grade and margin plus the patient's age and health would have a bearing. Hopefully none of this will put us in much greater risk of local recurrence. I may have to find another oncologist.

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    PamEP, I know, it's so frustrating.... I am in the same boat. Even though all these docs are under the same "hospital system", they are all in different offices scattered over 3 different towns. There appears to be little coordination, or a schedule mapped out and someone coordinating things to make sure everybody stays on schedule. That falls on the patient. I wouldn't even mind that so much, if I had know what the schedule was. The only clear dates I got were the surgery and the post-op with my BCS that I booked.

    I had a huge mess with the MO when I tried to relay that the BCS said he and I should have an "if this than that" discussion BEFORE my surgery so that I knew when he would send Oncotype or not, and he would have the results of that when he and I met for my post op with him.

    That didn't work out so well, as we never had the conversation, and when I called him to discuss, he told me to just wait until our post op which was like 3 weeks out. I was also told by the RO that I should meet with her 2 weeks after my surgery, after my post op with my BCS, but by BCS told my I shouldn't meet with her until after I met with my MO and he cleared me for radiation, meaning no chemo.

    So the whole scheduling thing can really get to be a mess. It seems no one talks to each other or is on the same page.

    Anyway... I just got back from meeting with my BCS's PA. I told her the RO said I could not have the radiation planning session until the seroma was "stable" and when I asked her how I would know it was stable, she said that was on the BCS. So I asked for another ultrasound today. And asked the PA to take measurements (she unfortunately did NOT do this last week). She "thinks" it looks smaller, but no way now of knowing without the measurements.

    She brought the measurements in to the BCS whose office day is today, and she said I should be good to go for radiation. I asked the PA what happens if this keeps shrinking - then the measurements will all be off from the planning appt, but if we delay the planning appt then I am pushing 9 weeks, and it seems 4-6 weeks is the optimal timeframe. She said it's kind of like the chicken and the egg.

    So the BCS is going to call the RO to discuss. I just don't want to go through radiation and have if not be effective because the seroma is throwing everything off. I've called the RO's office to see if coming in next week for the planning appt. is reasonable. As luck would have it I can't come in the following week because the RO is away at a conference.

    Seems like it's always something... Good luck with your appt!

  • ratherbesailing
    ratherbesailing Member Posts: 116
    edited October 2021

    Macdebbie -

    Glad you got the RO and BCS to discuss.

    I would just caution you not to go by one isolated study. The Dana Farber study was in women over 65, and it's eleven years old. Another ACSO study published around the same time said radiation was effective in Stage I-II patients as far out as 20 weeks. We all need to be careful not to read just one or two articles and take it as gospel - our physicians should be up-to-date on all the research. That doesn't mean there is one "correct" answer, even for them - different studies have different underlying parameters and, often, different results. But still, they have a lot more information than we do, and are more adept at interpreting it.

    Also, ask your RO for confirmation, but I believe in general they take "port" films once a week to check for any changes in body habitus that might affect the radiation field. So if your seroma changes, they will likely see it and be able to adjust. Again, I'm not a physician - check with your RO.

    Sounds as though you're making progress!

  • macdebbie
    macdebbie Member Posts: 65
    edited October 2021

    Ratherbesailing, thx. Yeah, I know. It's hard. I just looked at my notes from the RO and she said they like to wait at least 4 weeks for a patient to heal, and she told me that if I have to go an extra month (so at 8 weeks) that would be OK. I seem to remember too that the MO said radiation ideally should happen between 4-8 weeks.

    In any case, my RO office just called, and they said my BCS had cleared me for radiation, so I booked my planning appt. for 10/21. That gives me another week of compresses to try and resolve this a little more. I'll ask about the adjustment process, because I'd really like this to be gone before the actual radiation treatments, as I read that if a seroma is left, that it can become infected, and according to the RO once radiation starts it won't resolve.

  • ratherbesailing
    ratherbesailing Member Posts: 116
    edited October 2021

    That's terrific that you're cleared! I promise the stress of waiting and questions before treatment are almost always the worst part. Hope the seroma clears, and all goes smoothly for you.

  • BCat40
    BCat40 Member Posts: 121
    edited October 2021

    Radiationdoes not “lock in" a seroma. I had a seroma show up on my planning CT. At the time it was not bothering me. RO went ahead with radiation. A week in it started bothering me. RO said I could have drainage, she would just have to take new films before my next treatment to make sure the radiation location did not change. They didn't get it all out the first time and I had another drainage with ultrasound guidance the day after radiation. They got it all out in needle aspiration with no problem. It was certainly liquid and came out.

  • Too-Ticky
    Too-Ticky Member Posts: 19
    edited November 2021

    I developed a fairly large seroma below my mastectomy scar, back in June. They tried to aspirate it shortly after surgery but couldn't. There are big treatment delays in my area so my radiotherapy didn't start till 5 months (yes, months!) after my surgery. Of course by that time the seroma was stable anyway and my Oncologist believed that was just the shape that I've healed in and didn't want to delay my treatment any further (which I was very pleased about!).

    I've just completed my 15 radiotherapy sessions with bolus, so it's close to the skin's surface. So far the remaining seroma doesnt appear to have made any difference.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited November 2021

    I just had DMX with expanders November 2. Had some issues with skin healing. Had another surgery for that. November 23 Most likely radiation would be put off till January sometime after my fills are finished and skin has healed. Which could be 10 to 12 weeks out. I had completely clean margins and no lymph nodes involved. I had chemo before surgery.

    So my question is would the 10:12 weeks out be too long to be beneficial of radiation???

    I have looked online but thought maybe you all could probably answer better as you have contact with your own drs.

  • pamep
    pamep Member Posts: 66
    edited November 2021

    LoverofJesus: My RO stated that radiation therapy should start by 12 weeks out from surgery. He was prompt to start my treatments to be within this timeline because my MO's referral was cutting it close. But, as you can see in my signature diagnosis, my BC is quite different than yours and that may play a role in professional timeline decisions. All in all, I am glad to have undergone radiation as a local recurrence preventative.

    Be well.

  • parkstar
    parkstar Member Posts: 1
    edited August 2022

    I am still waiting for my radiotherapy, I am well from lumpectomy and delays due to hospital wait lists. I was meant to get radiotherapy 6 to 8 weeks but only just got my planning CT scan date which will be week 11 and told won't get radiotherapy until week 13 or 14 and am concerned, delay could mean a less good outcome. Any advice?

  • quietgirl
    quietgirl Member Posts: 165
    edited August 2022

    I know this isn’t going to give you an exact answer but a Canadian group studied patients for 15 years post surgery/radiation and found no significant statistical difference between when radiation was started https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4982229/ obviously from most perspective the sooner the better and statistics can get all wacko the more you look at them but considering recent COVID delayed in the last couple of years and such what might be ideal and what is reality can be two different things (added to that different countries seem to have guidelines the study I linked said something about in Italy they like to start before 15 weeks


    I hope that helps a little

  • carmstr835
    carmstr835 Member Posts: 147
    edited August 2022

    I had surgery March 2017, chemo May 2017, and radiation Sept 2017. The radiation was 6 months after my surgery. There were delays after surgery because my oncologist really didn’t want me to have chemo, but relented. They waited for the Ontario score and mamaprint even though I was HER2+. My cancer returned to my lungs almost 5 years to the day my first cancers were diagnosed. I had bilateral 2 primary breast cancers it was extra nodal and node involved on the right side, as well as HER2+. I wonder if I had treatment sooner would it still have returned as stage 4