I had a lumpectomy and SLN Biopsy three weeks ago.
I’m healing nicely, happy with the cosmetic outcome and the scar.
My tumour was mostly DCIS, with a 7mm invasive ‘leg’, Grade 1, Her2 Neg, & strongly oestrogen and progesterone positive, margins well clear and nothing at all in the SLN biopsy - deemed an excellent prognosis.
By far the worst part of the healing is the ongoing and very slow to get gone, swelling & tightness around the scar tissue in the underarm. I’m extremely active and used to being very flexible (prolific yogi!) and high impact, and I’m upset and frustrated now by the ongoing ‘marble in the armpit’ feeling and tightness.
Now…I have to see the oncologist on Tuesday. And I have no doubt that radiotherapy is about to be talked about - and I’m dreading this.
I’m just starting to feel like I might see an end (at some point!) to feeling sore, tight, etc, and get my flexible body & enjoyable activities back, and just see radio therapy as further injury & really resent the side effects - especially the cosmetic ones and idea of more tightness, fibrosis, sore armpit etc.
Also, it massively reduces my options if the cancer were to come back in the same breast.
Given such a good outlook, low grade, and a high (8/8 for both) oestrogen & progesterone receptive tumour - I will definitely be given hormone therapy - do I really need radiotherapy? What is the difference in the chance of local recurrence with it, as opposed to without it? Would it be better to ‘wait & see’ - i.e. save radiotherapy for ‘if’ there was a recurrence in the same area?
Could I not just have it to the tumour bed? Or not at all?
Has anyone been in a similar position and has some experience they can share?
I believe I understand how you are feeling - mine was a Grade 1 strongly ER/ PR + tubular cancer which is an unusual type and very slow growing and rarely spreads outside of the breast . It was 8- 10 mm hard to say exactly which as I had a failed procedure under local anaesthetic to remove it as part of a clinical trial . After lumpectomy though my margins were clear and SNB was negative . I am older than you I’m 59 now and was 56 when I was undergoing treatment but that was still considered fairly young.
Being younger than me I would think that hormone therapy is going to be essential for you whereas my surgeon said that it would be reasonable for me to stop it if I didn’t get on with it due mainly to the type of tumour I had and because it had been caught so early . My medical history meant that I was unable to take Tamoxifen and I had pretty awful side effects on Anastrozole ( about 10% of us get joint pain and stiffness ) and stopped taking it after about 5 months .
I did have radiotherapy and sometimes like yourself I wonder if I wasted my radiotherapy treatment on this tiny slow growing thing but on the other hand having stopped the hormone therapy sometimes I’m glad that I had it . I did have redness for quite sometime , some swelling which settled on its own and some fatigue afterwards as well but I had a lot going on in my life and a shoulder injury which didn’t help. I’m aware when I’m stretching that my cancer / radiotherapy side is slightly tighter than the other but there’s no restriction of movement . I did the post - op exercises diligently for months after and still do a set most days even now . You do have to patient when you’re healing - I wasn’t if I had been I don’t think I would have fallen and hurt my shoulder after surgery. I did pull something in my Yin Yoga class on the radiotherapy side because I forgot it was tighter than before but it’s fine now.
I’m also a huge fan of Yoga - considering my age and the fact that I’m overweight I’m very supple and also love cold water swimming . I remember experiencing the frustration you describe not being able to the things I loved to do having had a lumpectomy on one side and with a rotator cuff injury on the other . I just about got back into swimming and then it was time for radiotherapy after which I didn’t swim for a good 6 weeks and with one thing and another it took ages for me to get back to Vinyasa Flow again though I was able to restart Hatha fairly soon and then Yin later . It’s tedious and frustrating and it feels like your life has lost its colour - but you will get it back . My very active friend who had BC ten years ago had a lot of problems with cording for the first 3 months but she determinedly went back to the gym anyway and did what she could which was mainly the exercise bike and gradually built up as things improved.
Have a good talk with your Oncologist about your treatment going forwards both hormonal and radiotherapy . Also make use of your BCN and the helpline on here , when you are in BC world the decisions are yours to make but make one that you can live with and based on evidence - I do still second guess myself at times about stopping hormone therapy and had my circumstances been a bit different would have tried to continue . Get them to do a Predict score for you which may give you a better idea of the risks with and without radiotherapy . I think you’re right , as you’re young they will want to stamp on this hard which will likely mean they want you to have it.
I’m sorry that you are healing so slowly and please make sure to highlight that at your appointment and get your wound assessed by your BCN if it doesn’t improve . Xx
My situation was similar when I was diagnosed two years ago. I had a lumpectomy with clear margins and no spread to lymph nodes. My surgeon explained the statistics for reoccurrence to me and it seemed the radiotherapy had a much bigger impact than the hormone therapy and he strongly recommended it.
I was prescribed Letrozole but was allergic to it so was switched to Tamoxifen. Tamoxifen is a little less effective but since I had the radiotherapy I and the doctors were happy with the change. I have some side effects from tamoxifen which I am living with but feel I could give it up if it became too much as I have had the radiotherapy which has a much bigger impact.
I had five days of radiotherapy and had few side effects and was off on a three week holiday to Patagonia a week after it finished.
I also think that having the radiotherapy as soon after surgery is better as there are fewer potential cells left the clear up at that stage so it is more effective.
I was worried about the lumpy scars under my arm pit but they did eventually go and you can’t see anything now.
It’s important to keep doing the stretch exercises - I still do them after two years. I do Pilates twice a week and I am tighter of the surgery side but the Pilates helps.
Thank you so much for your reply - could I ask you how long your course of radiotherapy was? I was expecting to be offered the five days given that my prognosis is so good, but then my surgeon said it was more likely to be three weeks and they only do the five days if you’re over 75. I’ve read, and my breast care nurse was of the impression, that 5 days is actually the standard now. (I had read it did the same thing in a higher dose over five days than over three weeks and reduced the side effects, so that’s what I want if it is possible & I decide to have it.)
Thank you so much for your reply - it is very helpful. I don’t have a surgical scar under my armpit at all, it was all done through one scar hidden in the fold at the side of my breast, but there is lumpy scar tissue there giving the marble in the armpit effect and I hate it! It’s really good to hear that settles. Is the tightness going to be a percent thing now, then?
Could I ask you, does the pain go away and you’re just a little tighter on that side? Or am I living with it hurting to stretch my body on that side forever now? (I’m a little cross that absolutely no one tells you to expect this with lumpectomy!)
Well done for reading my post - I went on a bit ! I only had the 5 treatments . At a pre- treatment phone call from someone actually on the Radiology team I realised the Oncologist had given me the wrong information when she suggested I might have 15 treatments and I think someone else had been involved in selecting my treatment plan and had picked 5 so it might be that there’s a Radiologist or MDT involved in deciding how many treatments everyone has. Oncology is a broad speciality they order the treatments but perhaps aren’t always party to these relatively small tweaks for every condition. With the 5 treatments the dose per treatment is higher than if you have 15 but the total dose is less - 29gy instead of 40 . You could ask the treatment centre to clarify or get your BCN to do it for you because unless the protocol has changed again from 2 years ago ( which I suppose is possible ) a lot of us who are well under 75 have been having 5 treatments and if they have you down for 15 you have a right to know why especially if that would a deal breaker for you . Xx
It takes time but it does get much better. I have found I still feel a little tightness sometimes (after 2 years) when exercising/stretching and some tenderness in the breast, especially with tight hugs! I think they could explain this better when you get the post treatment advice. The nerves and muscles have been impacted and it takes time to fully heal. But the worst was over in about 3 months. It really does not bother me now.
My advice is to get as much information as you can about your personal cancer, get all the statistics you can. Reading posts on here, I feel I wasn’t told enough, just what treatment I would be having. My lump was 31mm Grade 2 & I had 5 sessions of radiotherapy, which I’m glad I had as I chose not to take Tamoxifen, because for me at 76 the 1-3% better chance of not having a recurrence (figures given me by my radio therapist at my follow up appointment) it gave me was not worth the risk of any side effects. I have been extremely lucky as my surgeon was brilliant, the scars from my lymph node removal, lumpectomy & excision have practically disappeared after only 4 months. They are smooth & I don’t even notice them. I didn’t suffer any stiffness whatsoever. I had an itchy rash & skin burn from the radiotherapy & I suffer the occasional fatigue, but I seem to be fit & healthy again. I do feel happier that having the radiotherapy will improve my chances of a recurrence.
Arrrrgh… So, after seeing the oncologist yesterday, it just got even harder to decide whether to have radiotherapy.
She said the actual invasive part of my cancer, the 7mm ‘leg’, was tubular breast cancer. This has a low rate of local recurrence. It was surrounded by an area of intermediate grade DCIS. Whole tumour size 22mm. The clear margins were a massive 4mm. Tubular breast cancer also rarely spreads outside the breast.
She said my risk of local recurrence without any further treatment at all, would be less than 15%, but she cannot say how much less than 15%. They wanted me to have five days of radiotherapy followed by boosters to the tumour bed. Because my tumour was very close to the skin, this is likely to result in a permentant ‘burn’ mark where the tumour was, on my skin. Unacceptable to me, I’m thinking definitely no boosters.
She said radiotherapy would reduce my risk of recurrence in the same breast to 5 - 7%, maybe 10% without boosters.
Cosmetic outcome at the end of all this is VERY important to me. I’m only just 40. A higher, tighter, shrunken breast, is not what I can live with - I’d become a depressed hermit.
The thought of fibrosis from radiation further tightening the area of my surgery is really upsetting to me - my freedom of movement is invaluable (I’m probably hyperactive in some way, if I was a child now, I’d put money on being diagnosable!). The thought of lung damage or a permentant brown square on my chest are also devastating to me.
Without any further treatment there’s better than an 85% chance this doesn’t reoccur in the same place. If it did, within the next 15yrs, I would definitely want to be able to have implant reconstruction - i could no longer have that if I’d had radiotherapy.
They also suggest 5yrs of tamoxifen. My tumour was 8/8 positive for estrogen & progesterone. This is ok…I can try to do this & see if anything transpires that I cannot live with. The radiotherapy is irreversible & can keep having ongoing effects my whole life.
Less than 15% chance it recurs in that breast. Better than 85% chance it doesn’t.
The invasive cancer was low grade & the tubular type, only 7mm.
Is radiotherapy worth it?
Do I ‘save’ radiotherapy for if anything else were to come along/to preserve the reconstruction options if it did???
Anyone not done radiotherapy in similar circumstances? Are you happy with your decision later?
Any advice or experience really needed & welcome!
Maybe you could ask your BCN to clarify for you or just talk it through with them / use them as a sounding board . I did this when I was having a dilemma because I’d stopped the hormone treatment - she mainly just listened but that helped me to come to a decision . I had the Predict survival score done rather than the recurrence risk . You might benefit from going through everything with the Nurses on the helpline on 0808 800 6000. And perhaps the Someone Like Me Service might be useful - they may be able to put you in touch with someone younger who has had the boosts which might be useful.
It may be just because you’re young but there must be a reason why they’re wanting to give you the boosts so make sure that you have as full an understanding of your situation as possible before you make this decision . Xx
Hello, I had similar surgery age 36. I was happy to do anything that reduced my risks of recurrence. I too am super active. I had 15 doses, then an extra 5 targeted at the tumour site. It was left side too and when I had radiotherapy, there was no techniques used to minimise impact to the heart, which are inplace today. For me radiotherapy was an inconvenience with no lasting problems. You can’t tell where I had it and I have no movement restrictions because of it. I am years on and I am a triathlete, skier, anything outdoorsy and I love yoga and pilates too. I think I am trying to reassure you radiotherapy can be worth it. I appreciate everyone is different and balancing risks and well-being is difficult. Best wishes.
My predict score is 96% without radiotherapy, 97% with radiotherapy for 15 yrs. And probably actually higher than that in both cases with it being a tubular cancer. The radio is only about local recurrence risk for me, I think. And the boosts are due to age, yes - a longer time where the cancer could recur. I did speak to my BCN and she was really good - she was saying the only reason they are offering me the radio is age and agreed due to my slim body type, if I could no longer have implant recon if a recurrence were to happen, there is not much option as I do not have any tissue flaps to give! It is such a tough call.
This is reassuring but, as you say…it going this way for one person doesn’t mean everyone would be as lucky. It’s so difficult to make this choice.
Thank goodness it has gone so well for you & not recurred.
That is my greatest fear, I think - I do it and regret it because I am so harmed by it or the cancer comes back and I have no options!
Hi, Sorry to come to this late. I also had grade 1a cancer with 50mm grade 8 DCIS and 2mm invasive. Lymph nodes clear. Positive for oestrogen and progesterone receptors. I also had a lumpectomy, like you. The radiotherapy was presented to me as pretty non-negotiable and I was pleased to have it. I thought I had got away without any side-effects: no tiredness or burns but a few weeks later got a tightness in the breast tissue leading up to the armpit. I have had to do a lot of stretching exercises but 6 months later it has almost gone. So I would recommend having the radiotherapy but unlike you, I have decided not to take Tamoxifen because the details of my cancer were put in the predictor programme and the difference for me was a 0.4% benefit over 10 years. I might change my mind but at the moment I am thinking that it’s not worth risking the side-effects for such marginal benefit. I asked the oncologist what that stat actually meant and he said that in 10 years roughly 1 in 200 women who hadn’t taken Tamoxifen wouldn’t survive but that you might also not survive even if taking Tamoxifen. He said that he thought it wasn’t worth taking but it was up to me, so that’s where I am at the moment. Did anyone reading this make the same decision? Thanks and good luck!
Hi rosab, it was good for me to read your post, I too decided against taking Tamoxifen, my statistics were 1-3% benefit, so I’m not taking them either. I keep reading posts regarding recurrences and secondary cancer & just hope I’ll be lucky not to get it again, or if I do, that it will be primary & not secondary. good luck with your decision.
I tried Anastrozole but stopped it due to side effects after 5 months or so. I was on Predict 2 and my scores only improved by 0.8% over 5 years to 1.3% over 15 years with it and my Consultant surgeon said that he felt it would be reasonable for me to stop it if I didn’t get in with it. I was initially prescribed Tamoxifen but when I queried it it was changed due to my medical history. I am 59 now - 57 when I stopped it.
I also had the radiotherapy - 5 treatments only though to the whole breast. There was some fatigue and redness some swelling and itching all of which have resolved now though my breast has pulled in a little more this year . Compared to hormone therapy radiotherapy even with the side effects was a breeze really. Considering I didn’t tolerate hormone therapy I’m glad that I had radiotherapy . Xx