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Sarah_Louise's avatar
Sarah_Louise
Member
13 years ago

Radiation Advice

Hi ladies, firstly, I just want to say that you all inspire me! Made of much stronger stuff than I am. My Mum was diagnosed with TNBC about 7 weeks ago. She had a mastectomy of her right breast and total axillary clearance, with 37 lymph nodes removed (yes, her surgeon was very thorough, thankfully!) The original tumour was 2.7cm and it had only spread to 1 lymph node out of 37. All her scans came back clear, placing her at early Stage 2, Grade 3. She started chemotherapy 3 weeks after surgery and has had 2 rounds - so far so good! No extreme side effects yet, apart from the hair loss, but she's ok with that because it means she can finally have straight hair for the first time in her life! What I really need some feedback on is radiation. Her surgeon works within a team of specialists at a couple of different hospitals in Perth. Both he and another surgeon don't believe she needs radiation as it had only spread to 1 lymph node but one other came back saying that he recommends radiation in all cases with node involvement. I was just wondering if anyone out there with TNBC (perhaps a similar situation to my Mum's?) has any information or suggestions? She doesn't finish chemo until January so has until late February to decide whether to go ahead with radio or not - I just wanted to get a bit of feedback. There are studies that have shown that it does help to prevent a recurrence later on, yet other studies have shown that when it has only gone to 1 lymph node, radiation doesn't really have much of an effect. Just wanted some feedback! Thanks!

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  • donnar's avatar
    donnar
    Member
    13 years ago
    Hi Sarah, What a lovely daughter you are looking out for your mum like this. Oh, so your mum is hormone positive? Surgical margin clear? My hormone receptors were negative so didn't need hormonal therapy and HER 2 was negative as well so no need for herceptin.. ( a drug needed for 5 years I think) yeah, all up I was recommended 4 x AC every 3wks for 3mths ( this was the hardest) and then taxol weekly for 3mths. The biggest challenge I found was navigating all around this! What helped was my journey kit. Get hold of that as its a great introduction to this mindfield. My surgeon has been great. My oncologist gauged my reaction as the weeks wore on. I needed the booster shots to increase my white cell count so maybe your mums is on the low side hence not too much chemo as it does effect your white cell count.. I would ask the question and mention my treatment plan if you like. Well, I had good news this week. Had my mammogram and ultra sound and it was all clear- yay! Such relief! I'm looking at reconstruction next year as after radio needs to heal for a few more months. Oh and my surgeon said inplants are a no go after radio . So I'm looking at using bit of tummy, skin off back etc.. The other thing to be aware of too is that once you start radio the doctors said I must complete the treatment. No stopping mid way. Its a tough one. They also said not to wait more than 4wks after chemo.. My fear was damage to my heart and lungs but they positioned the rays on an angle. Also, I had no radio to my armpit. Just the chest wall. My surgeon made sure of that. Doing so increases risk of Lymphadema. I hope this helps, here if you have any other questions :) cheers, Donna
  • Sarah_Louise's avatar
    Sarah_Louise
    Member
    13 years ago

    Another question Donna - sorry, it's a bit like 20 questions! I see that Mum's chemo regime is slightly different to yours (I have been reading your blog). She is only have 6 rounds in total, every 3 weeks, and I was wondering - is there a reason for this? I mean, I know that everyone's situation is individual but I just wanted to make sure that Mum's Oncologist is doing everything right! Ha, I am a paranoid daughter... Mum and the rest of my family is in WA and I am in Melbourne so I guess I am just trying to have some sort of control over an uncontrollable situatiob. Thanks again! Sarah

  • Sarah_Louise's avatar
    Sarah_Louise
    Member
    13 years ago

    Thanks so much Donna, I really appreciate it. I think Mum is feeling the same - she has to get through the chemo first and then she can think about making more decisions. She is going through 3 rounds of FEC and then 3 rounds of Taxol. Her last chemo treatment (all things going to plan) is the 8th of January at which point she will do some research on radio. I am going to suggest to her that she gets a second opinion as well - that seems like a good way of getting a couple of ideas. 

    As for her arm - it is really quite annoying for at this stage, more than anything else. She too has slight cording which she is working with her physio on and she also has a trained lymphedema specialist who does the manual draining massage on her about once every 3 weeks, after the chemo - she is very lucky to have all this on her doorstep really! She is also petrified of lympedema so we are trying to keep on top of that as well. Did you find that radio affected your arm at all? I think that is one of the considerations she is taking into account when trying to decide about radio.

    How are you going a year on from diagnosis? I hope everything is great with you.

    Thanks again, Sarah

  • donnar's avatar
    donnar
    Member
    13 years ago
    Hi Sarah, Happy to help anyway I can. Yes I waited until I finished chemo ( AC and taxol) as you need to process things. Had about 4wks break before I commenced radio. Needed to heal from chemo. I found it helpful that I got a second opinion. Both doctors explained their views and even my surgeon. What ever decision your mum makes will be ok. I did have a sore arm. Still do from time to time. I needed to drain the armpit after the tubes came out a couple of times.. I also had slight cording which my physiotherapist helped with. Recommend getting a physiotherapist to keep your mums arm in check. The thought of Lymphadema scares the life out of me so I'm doing all I can to be informed. Went to Lymphadema work shops to be across it and aware of the risk factors..good luck with everything if you have any questions at all ask away. Take care, Donna
  • donnar's avatar
    donnar
    Member
    13 years ago
    Hi Sarah, your post reads like a carbon copy of mine a few months ago... Get as informed as you can. I got 2 opinions and asked a lot of questions. I decided to go ahead with radiotheraphy as my cancer was grade 3 aggressive with a high recurrence. It had also spread to one lymphnode out of 30 ( stage 2) had left breast removed, lump was about 4cm.. It was more the aggressiveness that swayed me.. But in saying that, do what's right for yourself. It can be so subjective. I just thought throw everything I can at it. When I met with my doctors I asked them both the following question.." If you were me what would you do"? All the best? Donna
  • Sarah_Louise's avatar
    Sarah_Louise
    Member
    13 years ago

    Hi Chamini, 

    Thanks for the reply - it really does help hearing from other people about their treatment programs - lots of decisions and lots of different paths to take. My general impression is that if you have a lumpectomy you generally have radiation to stop it coming back in the same location... seeing as Mum had a mastectomy (wide excision) and total axillary clearance, I'm not sure radiation is as effective as with a lumpectomy, especially because there was only 1 active node. She is currently going through 6 rounds of chemo so I guess we assess after that is done.

    Hope all is now well with you.

    Sarah

  • Sarah_Louise's avatar
    Sarah_Louise
    Member
    13 years ago

    Hi Chamini, 

    Thanks for the reply - it really does help hearing from other people about their treatment programs - lots of decisions and lots of different paths to take. My general impression is that if you have a lumpectomy you generally have radiation to stop it coming back in the same location... seeing as Mum had a mastectomy (wide excision) and total axillary clearance, I'm not sure radiation is as effective as with a lumpectomy, especially because there was only 1 active node. She is currently going through 6 rounds of chemo so I guess we assess after that is done.

    Hope all is now well with you.

    Sarah

  • chamini's avatar
    chamini
    Member
    13 years ago

    Hello

    I was given radiation even though mine had not spread to the lymph nodes.  The directed radiation to the affected breast is to prevent it coming back i nthe breast rather than anything else. I was told it does depend on the person's age.  However mine was a lumpectomy and not a full masectomy. So slightly different case. They also believe that older you are the less effective radiation thearapy is

    All the best

    Chamini

     

     

  • chamini's avatar
    chamini
    Member
    13 years ago

    Hello

    I was given radiation even though mine had not spread to the lymph nodes.  The directed radiation to the affected breast is to prevent it coming back i nthe breast rather than anything else. I was told it does depend on the person's age.  However mine was a lumpectomy and not a full masectomy. So slightly different case. They also believe that older you are the less effective radiation thearapy is

    All the best

    Chamini

     

     

  • Jennt28's avatar
    Jennt28
    Member
    13 years ago
    Sounds like you have done some research already and know that the studies are out there showing no benefit to rads if you have had a full mastectomy and axillary clearance with 3 or less positive nodes. In those cases the short and long term risks of rads starts outweighing the benefits... If you've had 2 opinions for "no" and one for "yes" I would go with "no" personally. Jenn