Radiation burn treatment solution
Hi everyone! I just finished 3 weeks radiation. Breast care nurses gave me sorbolene which I trusted would help heal and keep my breast moisturised. The redness became redder after each time I applied the cream and I thought this is how it's obviously meant to be. A few days after my last treatment, I met some people at a social gathering. A lady who also had radiation, told me about an app called 'Yuki'. She looked up my sorbolene brand, Kenkay and it rated very poorly, 39 out of 100 and contained petrolatum which is a known carcinogen and endochrine disrupter!! I was horrified. My partner's sister got me a bottle of Lavaderm, which I sprayed on and it was so cooling, with natural ingredients. I then put on jojoba oil. The next day - I kid you not - my skin went from lobster red to mild pink!! My skin is back to normal after 2 weeks. Please check your products ladies for after radiation care!
Not sure where to turn for advice
Having been recently diagnosed with a 7.7cm tumour in my B-cup breast (luminal A, invasive ductal carcinoma) and no detectable tumours elsewhere, I've been scheduled for a mastectomy next week, followed by radiation, and possibly chemo, age 43. I don't want to have a mastectomy or subsequent treatment, for a number of reasons. Psychological firstly. Not having longevity as a goal. Not feeling I can physically show up and consent to disfiguring, aggressive and permanently polluting (of body) treatments - feeling that I'd rather die a natural death. Not fearing death. Not feeling any psychological aversion to what's in my breast, not feeling any pain or physical inconvenience from it currently. And also because if it hasn't spread in all the time it took to get that big, evidence that I've found seems to indicate it's not going to spread. (i.e. cancers between about 6cm and 15cm at diagnosis have about equal chance of also having been found in lymph nodes or elsewhere at diagnosis - the 15cm cancers were once 7cm but no greater chance of spread in all that time? Seems the horse has already bolted and is just hiding out dormant elsewhere in body already, or is just peacefully grazing in its own paddock and will never bolt, so either way what's the point in closing the gate / lopping the tit anyway?) I know this is such an unusual way of thinking and I'm having so much trouble getting relevant advice. If I don't get treatment what can I expect my body to do? I'm also very worried about causing distress to people close to me who still expect me to get these awful treatments, I feel pushed by their expectations to do something major to my body I feel personally averse to, I don't know how to tell them. Wondering how to not distress others in any way, seems to be the cause of the majority of my own distress. Any suggestions for where to turn for more advice, or if anyone has had similar thoughts, or evidence/articles to contradict the idea that cancer spreads early in its development if it's going to at all, or just impressions about this situation you might like to share, I would appreciate it. (I have just started seeing a general counsellor with no cancer knowledge, and have also contacted Cancer Council counselling and made an appointment but that will be in 3 weeks. I don't think they'll have the medical answers I'm after, anyway. More support and sooner and more relevant could be so stress-relieving.) Sorry for long post and weird topic.
Negative impact of radiation on Flap (autologous) reconstruction??
Hi all, will have mastectomy in a couple of months time, am considering to have an immediate breast reconstruction (IBC) using my own tissues/ flap (autologous). Unfortunately, I will have a series of radiation after the IBC. I am worried the radiotherapy will kill/destroy/ causing complications on the flaps. I did some research at my end. However the comments were conflicting. Therefore would appreciate your advice. Please..no advice is too silly. Thanks heaps!
Surgical options when you need radiation post surgery ???
Hi All I am seeking advice/information about what options you were given for surgery when you needed to have radiation post surgery. A bit about me, I am 52 single mum to adult sons (one still at home). I was diagnosed with IDC Grade 3 Triple Negative BC in early May. I have been undergoing neoadjuvant chemo and have just completed my last AC treatment, but still have 6 months of immunotherapy to continue. I've lost 10kg as a result of AC treatment. I struggle with being able to eat much so the weight loss may continue which won't be ideal. I get fatigued extremely easily with shakes and feeling like I'm going to faint after simple activities like doing dishes and food shopping. So I'm pretty house bound with minimal family support available. Back to my main question, what surgical options were you given and what warnings about negative side effects of radiation? My initial thought was to have a DMX with immediate implant reconstruction but the Oncoplastics team feel i should go for a SMX with DIEP reconstruction due to the radiation requirement. Due to my weight loss I probably only have just enough tissue for the single DIEP procedure and I'll likely need fairly extensive node removal also as I had 3 active nodes at diagnosis. My concerns are the length of the surgery needed, the scarring from the DIEP procedure and the recovery time as I have my first grandchild due to arrive around Christmas time. Any advice, stories, photos, anything would be much appreciated. Thank you for reading this and I hope your journey is going well. Sandi
StratXRT - first use, not sure I’m doing this right?!
Hi all Invasive lobular carcinoma (Grade 2, ER+ PR+). Breast conserving surgery completed 4/9 (after a wide excision open biopsy on 6/8). Started the first of 15 radiation treatments today and have opted to use StrataXRT. Have only used it once and it doesn’t feel like I expected. Everything talks about a ‘gel’ ‘drying’ and forming a film but this feels like a greasy, not wet solution, and it doesn’t feel wet or dry or appear to have made any film - just a soft, slightly greasy layer similar to how your skin is after using a body butter. Am I doing something wrong? Can anyone who’s used this give me any advice? Keen to get on top of this before application 2. So grateful in advance for your assistance. 🤗❤️
Radiation - Is Moo Goo enough?
Hi everyone, I am currently undergoing a 6 week radiation treatment, two weeks in. I am using Moogoo 3 - 4 times a day and my skin is healthy to start with. I am having underarm, left breast and left lower neck. Due to the large area, I have been advised to use Moo Goo 3 - 4 times a day rather than Strata XRT and our centre does not offer Metipel (plus it is so humid up here in Cairns so would not really be viable). My skin is healthy and I am feeling confident, just wondering if anyone else only used MooGoo and if they had minimal side affects? I understand the worst will be the two weeks post radiation and know that two weeks in is very early days. Thanks for your advice and feedback :)
Avoiding radiotherapy
Hi, are there any community members here that have avoided radiotherapy and then regretted it later? or vice versa. I had a very small pre cancer, which was non-invasive and I'm in my 40s. I am anxious about radiotherapy (long term effects) and though its the standard treatment (because the precancer was high grade), I am not totally comfortable with it, but perhaps that is normal? Any insights appreciated.
