"You may or may not undergo Radiation Therapy"

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Of all the statements, this has stunned me because it was said in an open-ended fashion. I am used to a definite answer all the time from surgery, chemo and other procedures. 

My radiation onco actually mentioned that I may or may not undergo radiation. And stressed on the side effects of the treatment.

Why yes to undergo? Because one of the excised nodes was found to have a 1 mm. cancer cell in one of the nodes. Secondly, Higher chances of no recurrence.

Why not to undergo? the surgery, chemo, herceptin might have removed the cancer cells left, the reconstructed breast will shrink and will become tighter, swelling might occur and will be permanent, + the side effects of the treatment, the heart and lungs can be affected etc.

More disadvantagse than the advantages  were given that in my mind , i better say no. But still , i  need a lot of advice before making my decision. 

Any advice/opinions are welcomed. Thanks in advance.


By the way , my doctors did not carry out axillary dissection because of the reconstruction and the vascular augmentation done on my right breast.

Comments

  • vballmom
    vballmom Member Posts: 426
    edited December 2012

    I had a similar diagnosis but did not have reconstruction yet.  My team (MO, RO and BS) that radiation showed a significant survival benefit.  I just finished and it was definitely the easiest part of the journey so far.  I believe the number was  7.3% benefit, which was significant enough for me to go for it.

  • lago
    lago Member Posts: 17,186
    edited December 2012

    I too was in a grey area. Usually tumors over 5cm (mine was 6.5cm in the posterior region right over my heart) get rads. I think in my case my heart, lungs and bones definitely would have been affected. Benefit not worth the risk for me. My RadOnc said I was getting such agressive treatment that she was giving me a pass.

    But I didn't have any node involement.

  • mumito
    mumito Member Posts: 4,562
    edited December 2012

    Do all your research before you agree to radiation.For some of us the SE's are awful.

  • Traii
    Traii Member Posts: 1,138
    edited December 2012

    I won't be having radiation as this is whats caused my BC.

    I was dx with Hodgkin's disease in 1996 see below details....mantle radiation caused my BC and thus through lots of discussions etc rad doc said that I could have radiation again .. i've opted for no no no. My onc seems to think that even with rads the benefit isn't all that different even with 2 positive nodes out of 10.

    I did have axillary clearance though and will be having a BMX after chemo

    I've just completed Taxotere and starting CMF x 3 in Jan.

    Good luck with what ever you choose

  • PixieNel
    PixieNel Member Posts: 90
    edited December 2012

    Hi all. Thank you very much for your inputs. I am weighing it very carefully. Its very tough when doctors puts you on the spot. 

    Iago!!!!! Nice to see you!

  • Outfield
    Outfield Member Posts: 1,109
    edited December 2012

    PixieNel, my diagnosis was very different from yours so I don't want to tell you about my personal experience, other than that I did have radiation.  

    I do want to urge you as you make your decision to be sure you are factoring in what I think are the really important side effects from radiation.  You'll hear a lot of people say it was easy, or they were tired or burned but that got better, but those are all things that are temporary.  Radiation inevitably causes permanent, irreversible damage to the normal tissue in the field which is often not very visible.  Of course, sometimes it's very visible, but either way, it's there.  Wounds and infections aren't expected to heal as well.  There's a reason there is a local limit to how much radiation any specific part can receive:  after too much the tissue kind of falls apart.  

    But as I said, I did choose radiation.  With my particular cancer, my risk of local recurrence was fairly high.  Radiation's biggest effect is in decreasing the risk of local recurrence.  It wasn't until the past 2 years or so that it was even shown to have any effect on survival.  That was difficult information to get because it's been standard of care for so long for a lot of breast cancer because of the improvement in local recurrence.  I don't want to pretend to know your personal risks of recurrence, but when you look at a number like 7.3%, it's important to know if that means relative or absolute risk reduction.  

    Usually, when risk reduction is published, relative risk is the number made more prominent because it's larger and looks more impressive.  Say you have a recurrence risk of 10% (just making that up).  A treatment with a relative risk reduction of 20%, which sounds like a lot, would actually only mean a 20% reduction of 10%, not 100%.  Your absolute risk would go down fom 10% to an 8%.   

    I know my radiation oncologist would have gone over my own numbers in that kind of detail.  Of course, it's all risk, nobody can say for sure what will happen to you in particular, but treatment decisions are basically playing the odds.  

  • PixieNel
    PixieNel Member Posts: 90
    edited December 2012

    Thank you for your input, Outfield. When I was given the %, I put that aside. Because still, cancer can recur. I weighing more on the damage it can cause on the tissues + effects of radiation. You made a valuable info on it. THanks so much.

  • lago
    lago Member Posts: 17,186
    edited December 2012

    PixieNel I would also look at if you decide no and did get a local recurrance, what would the treatment be?

  • PixieNel
    PixieNel Member Posts: 90
    edited December 2012

    Iago, from what i research, radiation stops growth of cancer cells while  systemic therapies remove cancer cells. Most likely, systemic therapy will be step up again. 

  • lago
    lago Member Posts: 17,186
    edited December 2012

    PixieNel if you choose not to have radiation and have a local recurrence you might get both systemic and radiation but you'd have to ask your onc to be sure.

  • Rose_d
    Rose_d Member Posts: 144
    edited December 2012

    I too had a similar diagnosis and struggled with the radiation decision (more than any other one this year!).  I had 2.5mm in 1 node (had 17 others removed all negative) and a 1.7 cm original tumor.

    I met with 3 ROs all of whom recommended radiation, but 2 of which clearly said I was a boderline case and they would support my decision either way.  I spent a lot of time with one of them going through studies that showed local recurrance rates of anywhere from 6%-30% depending on the population (e.g., woman under 45, women with 1-3 positive nodes, etc.).  Which is what makes this a difficult decision - if you believe 6% you would not do radiation because the risks aren't worth the very little benefit.  But if you believe 30% you would do it.

    It feels like it is very hard to get a good opinion because ROs are understandably looking only at local recurrance rates and over a very large population.  So they aren't thinking about quality of life tradeoffs or whether the benefit to a single person is worth it.

    At the end of the day I think you just don't know - both how your body is going to respond to the treatment and whether or not it's worth it for you.  So I think it will come down to your personality type.  Are you the kind of person who can say 'I know I have done enough of the things I should to prevent this from coming back.  I'm not doing radiation and I'm moving forward and not looking back' or are you the kind who would say 'In order to sleep at night I need to be able to say I did EVERYTHING possible'.

    For me I knew in my heart I was in the latter camp, that I would probably always be looking over my shoulder wondering if I had made a mistake.  So I did radiation and finished at the end of October.  I know that I have a very small amount of lung damage from it (because the RO told me not because I notice any difference) and a couple of weaker ribs.  I understand that I may not have seen the full impact yet, but my implant looks fine (isn't smaller or higher which they warned me about) and my skin is slightly darker in a couple of places but only noticable to me.  I had burns at the end of treatment that were disgusting but healed in a couple of weeks.  And I know that I have a 2% increased risk of lymphedema which I am truly truly hoping I don't get.

    Radiation was definitely the easiest part of treatment, nothing compared to chemo and surgery.

    One thing - because I had 18 nodes removed, they did not radiate my axilla which would have increased my risk of lymphedema up to 50%.  So I had the breast area and the superclavical nodes only treated.

    I wish you luck with your decision!

  • PixieNel
    PixieNel Member Posts: 90
    edited December 2012

    Thanks Rose_d. Truly the decision is driving me nuts. Even if I ask my medical oncologist on her suggestion. She just said its not her specialty and push it to RO. RO never give a definite answer and even said MO is also not sure if its indicated or not. Its like im in an limbo. Need to pray , really. Thank goodness for this forum. I read a number of cases who declined radiation and been learning heaps.

    Between the two personalities, i am more inclined to the first one. Its a relief to read your post. 

  • Alicethecat
    Alicethecat Member Posts: 535
    edited December 2012

    Hi Pixie

    I guess it all depends on how you will feel if you don't have the radiotherapy and your breast cancer comes back.

    Like you, I'm HER2+ - and I had a 3.4cm lump and 2.8 DCIS. The lump was near the chest wall.

    In the UK, being HER2+ and having a 3.4cm lump near the chest wall means radiotherapy, according to NICE guidelines.

    I didn't want to have radiation but I did it and got only tiny side-effects (a bit of fatigue, two tiny blisters).

    It's worth it to me to know that I did everything I could when tackling HER2+.

    Best of luck with your decision!

    Alice

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited December 2012

    PixieNel - I also fell into the grey area and had a difficult time with the decision and got multiple opinions on it.  The biggest argument for radiation in my case was that I had 2 positive nodes (more invasive cancer found there than in my breast) and I refused the ALND.  However I did not want my chest wall radiated because it was on the left side and I did not want my heart to be radiated.  My doctors said if I chose no radiation at all they were OK with it, after all it was a grey area.  Ended up formulating a compromise.  Had my axilla and supraclavical radiated and no radiation to my chest wall.  We discussed potential options if I had a recurrance (knowing that things could change if it did happend).  My MO said if I got a local recurrance then I would still have the ability to radiate that area.  The approach I went with for radiation is considered going outside the 'standard of care'.

    It is a touch decision, go with your gut feelings.  

  • lago
    lago Member Posts: 17,186
    edited December 2012

    Just to add my large HER2+ tumor (5.5cm IDC + 1cm DCIS =6.5cm .75mm from posterior region for IDC, 2mm for DCIS) was also in the posterior region. Rad oncs need to way risk vs benefit. It can be a judgement call.

  • websister
    websister Member Posts: 1,092
    edited January 2013

    Hi everyone

    I find this topic interesting as I was faced with a similar decision, thought I had made it and now it is being suggested to me that I get a second opinion (from a friend who works in radiation oncology area as a nurse).

    My story - I was referred by my MO to see the RO, appointment was November 9th. It was the end of the day on a Friday. The RO seemed very distracted, a medical student did the questioning and the exam and the RO did not seem very familiar with my pathology, when I mentioned different parts of it I had to show her in my pathology report where I read it. She seemed to shrug off my pathology or need for radiation, suggesting that it would be of minimal benefit for me with my tumor size and having had a mastectomy. I stopped asking questions after my concerns continued to be shrugged off.

    Now I am being told that I should reconsider the decision not to have radiation and so I have been researching. I have a few questions/concerns that I am wondering if anyone can help me with.

    When they look at tumor size when considering need for radiation do they combine IDC and DCIS or do they just look at the size of the IDC? If combined it would seem to be indicated by my pathology and node involvement.

    I had two nodes out of 27 positive for macrometastases, the largest areas was .5 cm, it seems that others had radiation recommended for much less than this amount.

    It seems to me that if my IDC was just under 2 cm but I already had macrometastases to two lymph nodes and I was HER2 positive that this would indicate the cancer was fairly aggressive, therefore should be treated aggressively.

    Has anyone had a port on the mastectomy side and still had radiation or is this a contraindication, it wasn't discussed with me.my port is for my Herceptin treatments and the surgeon who inserted it insisted that it be on the right side which is my surgical side.

    Input is appreciated. Thank you

  • lago
    lago Member Posts: 17,186
    edited January 2013

    websister from what my PS said the rules for who and who should get rads changes and is very complicated. He told me he just couldn't keep up. My tumor IDC + DCIS was 6.5cm but only 5.5cm was IDC. My understanding is the IDC is what they go by. Typically tumors over 5cm do get rads even if you get the MX but my RO gave me a pass. In her opinion I was in a gray area. My tumor was also on the left side between 2 & 11 oclock in the posterior region which would have also put my heart, lung and some ribs at risk. My RO felt I was being treated so aggressively ( BMX, all those nodes removed 6 tx of TC and a year of Herceptin followed by 5 years of Anastrozole) that I got a pass on rads… but also note that I didn't have any node involvement. I was 49, perimenopausal at diagnosis.

    But I agree you should get a 2nd opinion. The RO didn't seem to be paying attention nor did s/he seem familiar with your pathology. That information is much to important in your case to be overlooked. But remember you were treated pretty aggressively too.

    My port surgeon insisted my port be placed on the left side since my IDC was there. I did  have a BMX and the other side had a small amount of LCIS. At that time he did know I wasn't getting rads. I'm not sure how that would complicate things. I suppose it depends on the location of your tumor and where you would get the rads. The port might not be an issue.

  • websister
    websister Member Posts: 1,092
    edited January 2013

    Thanks, Lago, I appreciate your answer.

    I will be getting a second opinion, some on line research I found this evening from University of Pennsylvania, May 2010 -



    'PMRT in women with 1‐3 positive nodes remains controversial. However, it is our

    practice at Penn to recommend treatment of women with 1‐3+ nodes based on the long‐term data from both the Danish and Vancouver Trials, both of which show that the relative risk reduction in LR is the same in patients with 1‐3+ nodes as it is in women with >=4+ nodes, and that the absolute improvement in survival is the same in both groups of patients (about a 10% gain).'



    I dislike being in the grey area but this helps, in the end I will need to weigh the pros and cons and the info provided by the second opinion and then make my decision.

  • Traii
    Traii Member Posts: 1,138
    edited January 2013

    Websister, How you going ?

    I was told I can't have rads due to previous radiation I've had in the chest and lymphnodes area, however there was talk that I could do it again as it was 17 years ago.....they opted and I agreed, for no rads even though I had 2/10 positive nodes that was full of the dreaded 'c' ! After all it was the rads that brought on my BC!!!!

    My onc told me that having a lumpectomy, removing the lump along with tissue ( no clear margins so having a BMX mid this year) cleaning up with chemo would be sufficient ( well I'm hoping and praying that it is) but my onc does not always recommend radiation for his patients due to the SE's and future complications however depending on the BC

    I had a port for my previous hodgkins' lymphoma followed by rads so I don't think that would be of an issue however do get a second opinion indeed.....for the peace of mind later on that you know you did everything you could now.

  • websister
    websister Member Posts: 1,092
    edited January 2013

    Hi Traii , doing OK , still having some muscle aches and joint pain post chemo 6, very tired. Sounds like you had a wonderful New Year's Eve in Australia, I'm glad. It's 11:17 pm here right now, getting close. I napped this afternoon so I could stay up with my husband this evening to celebrate the New Year.

    Thank you for sharing, difficult decision - Definitely sobering to reflect on what the side effects can be vs the benefits. So sorry that you are here because of previous radiation but very happy to have made your acquaintance.

    You are having your next chemo on Wednesday, right? - I'll be in your pocket or on your shoulder :)

  • Traii
    Traii Member Posts: 1,138
    edited January 2013

    Wow, nearly 2013 in Calgary.....:) here's to a better year full of good health to you and all !!

    I'm having some muscle and joint pain, have had a 'flu' or like 'flu' this time around for just over a week and really playing with my mind . Can't wait to speak with my onc tomorrow, yes first CMF for me tomorrow.....half way there Websister and so excited :) Make sure you pop out of my pocket tomorrow, I'll be needing you :)

    I'm glad to have met all you wonderful ladies....maybe not under these circumstances, but I guess we are here..we are getting through it together and I'm so greatful :)

    Hope you go for that 2nd opinion re side effects vs benefits....it would most definetely be a difficult decision in which I trust with all your knowledge and wisdom that you will make the right choice , the right one for you :) x

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