Hi @linda6,
With A Cups, I don’t think I’d have worried half as much about tightening & fibrosis - as my oncologist says: the less tissue (I’m slightly built) the less there is to have a reaction. I think it sounds like you are in a very good position to get your margins shaved, & radio (so far, so good, for me) & get on with living your life.
I also asked about mastectomy regarding avoidant radio & the surgeon was very sure that I would have greater issues long term from scarring & scar tissue across my chest wall, & the function & flexibility of my body was really important for me.
All the very best with your decision
Xx
Just to say for people having radiotherapy boosters, dont worry, I had it and in no way has it caused any burning of the skin.
If they want to do boosters as its near the skin, that probably counts as a close margin. There are I suppose 6 margins (up, down, left, right, front, back), unfortunately mine had to be zero anteriorly as up to skin, and zero superiorly as was so high up there was no more breast tissue to take, other margines were fine.
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Hi,
If you don’t mind: how old are you?
I think a lot depends on your age and family status.
I am 42, have had and breastfed 2 kids and do not plan on having more.
So, I am focused on extending my life expectancy and quality of life (overall health).
I did not care about preserving or giving up the entire breast as I have A- cup, and my husband assured me that my life matters for him more.
Re Tamoxifen: you are weighing ~1% lifetime (I think) chance of Uterine cancer and increased chances of DVT and stroke (have not found the numbers for these yet) against the chance of local, other side and distant (metastasis) recurrence. If your benefit is only 0.4% (4 in 1,000 better chance of not dying or not having recurrence - depending on which forecast you did) with Tamoxifen, maybe not worth it given the other risks from taking it.
If you are young and still want to have kids, you could try Tamoxifen if it feels OK on your body/mood, etc. but you’d need to stop it for 1-2y to get pregnant and give birth. Then can get back on it, if oncologist thinks it is beneficial for your life extension.
For older ladies, I think there are many other comorbidities that might get worse with certain treatments, like radiation or hormones. So, again, you weigh them.
The hardest thing is the realisation that these are all just statistics of other women before you. How YOUR organism would react to therapies and behave in general in terms of recurrence, another cancer, heart attack, stroke, pneumonia, etc.etc. remains unknown
Best of health and luck to everyone!
XXX
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Hi,
In my case, the 4 side margins were good >2mm, but the top and bottom ones were <1mm for the same reason as yours - no more breast tissue. However, I remain puzzled: why not cutting a small piece of skin and muscle to be on the safe side? I also wonder if with such tumour locations (and tiny amount of breast tissue in the upper part of the brteast, as in my case), whether mastectomy is a safer option, i.e. do surgeons remove skin and some muscle tissue in mastectomy case or not.
How long time ago did you finish your RT? All good - no serious side effects?
XX
If you were to cut the skin above the tumour away, that would likely lead to an uneven puckered scar, that may have been created for no reason, or an extra unnecessary scar as, if similar to me, where the scar is, is not necessarily above where the tumour was - mine was positioned a few cm lower, probably to be lower than clothing neckline. Yours was at the side so more hidden and possibly not necessarily directly over the tumour’s position. They can obviously transition across from the surgical site to get to the tumour and sentinel node via the same incision sometimes, so no wound under the arm.
So taking consideration that your front and back margines were less than 1 mm, if they suggest boosters, I’d have them - and did.
I got 1 cord forming over 3 months later, just because I slacked off on going to the gym for 2 weeks before xmas. Snapped it by stretching ( ouch) no stiffness since. You may need to do the exercises and stretches that you should of been given post op for months or years later to keep supple. Its not a case of once feel fine, done with them as an inflammatory flate up can occur months after radiotherapy, it does get better though.
Reach for the sky with your arm on the ex-tumour side, then bend you body as far to the side as you can go, if you a feel a tight stinging sensation, that could be a cord that has formed.
Hello,
Thanks for your advice. I have 2 incisions: 1 rainbow-shape over the nipple (the tumors were ~2-3cm higher) and one under arm. I would prefer a piece of skin and muscle removed - do not show off my AA cup anyway, lol.
Do you see the “cord” or is it just the tight feeling and slight pain under the impacted armpit?
I’ve tried doing yoga (waited for 1 month after surgery) and feel a bit of pain and shhortness on the surgery side. But not too bad considering it is recent scar there.
Very happy to hear that you RT went well - gives me some piece of mind as I am scared to death of doing it and consider if mastectomy (going flat) is safer for long-term survival.
XXX
Lol no, the cord is imbedded in tissue. It wasn’t under the armpit at all in my case - yet everyone gets told that’s where it always appears. I suppose it could of started from there byt it was attached to lower ribs on tumour side. Interesingly, a week earlier, I had woken up with a sharp rib stab in the same area and wonder if that was when it attached. When it snapped, it was like a rubber band twanging from my ribs with a stinging sensation and sharp pain. Full mobility without soreness after though, so releasing it did the trick.
Hi Amy! I know your post is a while ago now - but how are you doing post-rads? I may have to do 5 days of partial (left breast) - so, rly appreciate others’ experiences! Thank you so much.
I’m doing 97% fine, thank you! Living my best life! I pray it continues this way. Every day my body is this healthy and flexible and willing to rise to every challenge I put in front of it is an absolute gift.
I ride horses, hike, climb, wild swim, confidently change and skinny dip in the wild, do daily yoga. Finding the right team and treatment for me has meant I’ve been able to get back to 97% exactly who I’ve always been. What I see as the last 3%, the NHS (& most other people) don’t see but I am fighting yet, for my best body all the way back!
Following the RT, for about 16wks I had the feeling of swelling/book under the armpit that had been there since surgery, intensify, and I’ve since fought the NHS to have their lymphoedema department look at it, their physiotherapy department look at it, and paid privately for a lymphatic flow imaging test to check everything is moving as it should be on my surgery side.
The NHS take one look at me and tell me I’m doing way better at 40 than most people my age and there is nothing to work on, but what is good enough or average, is not my lifestyle or what I want from my body. My lymphatics were fine – even the nurse I was paying to check for swelling said she could not see any, only my yoga back muscles (I quote: “To be fair, luv – you’re ripped! I don’t see anything!”). I’ve since learned from physio, that any time this swollen feeling bothers me now, it is a process of re-injury from my high level of activity and will continue to get better as the area re-navigates my demands of it. It’s already much less and a little ‘chicken fillet’ shaped piece of Mobiderm in my bra cup, like a walking around massage, helps it move on the occasion it is a bother. It’s expected to completely resolve.
Physio has also been great for a little residual tightness I had where my node biopsy was taken and in the side of my breast, from surgery more than RT, I think. My physio used a Lymphatouch machine on the whole area, which lifts and separates scar tissue and helps the flow of everything to encourage your body to go do more healing and softening in that area. It has been really good – ouch, at first – was a bit bruised and swollen for two weeks, but following, much softer and significantly reduced any tightness in the yoga poses it was mildly bothering me in. I might go for another session of this, then look into long term private scar management.
I used the 70% S2RMs – Recovery Serum from Neogenesis for 2 weeks before RT, twice a day for 3mths after, and once a day to 6mths. I’m just considering whether I can stop and just use the 5% moisturising spray now for maintenance. I was never more than slightly pink and this only happened on the last session. The pink did, however, fade to a very pale ‘sun tan’, which again, no one else feels they can see, but I can, and since it’s still there at 6mths post RT and bothers me enough that I won’t wear a triangle bikini in public anymore, I’m now waiting to see a dermatologist to see if there is anything they can do to make it even less visible. I still take the tocotrienols, Vit C and D, and Selenium to fight any deep tissue effects and will continue to do so for at least 2 years, probably more.
Incredibly grateful now for the ease of my BC journey so far, all the research I did to mitigate RT and surgery effects and all the work I’ve put in to getting my stretchy, strong, fit, best body back. I hope it continues to go the same way and I can be an example that the treatment plan needs to be truly individual.
The best advice I can give is: be a thorn in everyone’s side! Advocate for yourself, do your research, understand what is happening to your body from these treatments and fight for what you need for yourself to achieve YOUR very best possible outcome. Best of luck! I’m thinking of you!
The RT itself wasn’t a difficult experience.
xx
You’re awesome! Ty for this very kind and detailed reply! Wishing you the very best! Xo
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You’re very welcome!
And thank you! We’re all awesome, & fighting to stay that way through all of what is happening to us. I hope it gives you comfort & confidence about what you & your body can handle & achieve! xx
I was 38y/o when I had grade 1 stage 1 IDC removed in Dec. 2024, and then had 20 sessions of radio therapy in Feb/March with booster. I am also very active (tennis, yoga, weightlifting, running, biking) and was really upset with the limited mobility after lumpectomy, but I kept stretching and massaging a lot, and although I can still feel the tightness, the Range of motion is back to normal. Advice: keep moving as much as possible. Give it time. It will get better!
I also used the cream they give you religiously, and I have zero visible side effects on the skin from radiation. Maybe something will develop later, but right now it looks totally normal. The boob is a little bit swollen compared to the other, but def not shriveled. As I said, I can feel the tightness on that side, but full function is back.
I know it’s not an easy decision and not trying to tell you what to do! This def hasn’t been easy at all, but I wanted to report that i stayed super active and was able to recover pretty well. Radiation knocked me on my butt while I did it and for several weeks after, but there is light at the end of the radiation tunnel!