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.
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.
5 day radiotherapy treatment
I have recently been diagnosed with low grade early stage estrogen positive breast cancer. I have had a lumpectomy and the margins and 4 nodes removed were clear. I have been offered the standard 3 week radiotherapy treatment or a 5 day targeted radiotherapy treatment which only delivers the radiation to the area of the lesion. Has anyone had this 5 day radiotherapy treatment?
Confused radiation or mastectomy
Was diagnosed with early BC in June last year just shy of 42nd birthday. ER and PR + HER2- . I also carry BRCA2 mutation. My oncotype test came back with high risk. Lumpactomy done. Chemo done. Started hormone therapy - letrozole and zoladex monthly. Am now at crossroads of either doing radiation or mastectomy possibly bilateral to reduce risk. I don't know which option to take. Any experience or guidance would be most appreciated <3
Joining the shitty titty club...
So yep, newly diagnosed...46 years old, no kids and I took the pill for 10+ years...no doubt all contributing factors. Ended up with grade 2 DCIS with small invasive component, detected on routine screening thanks to a strong family history (mum and both grandmothers, plus a few other relatives) and several previous benign fibroadenomas. Lumpectomy and sentinel node biopsy and now about to commence 5 weeks of radiation therapy and then Tamoxifen, neither of which I want to do. Am also right in the throes of perimenopause and the periods from hell, because it's not shit enough to have breast cancer, the downstairs situation also has to mess with me. Of course there is nothing I can do about it at the moment and I hear Tamoxifen may even make it worse... Anyway, hi...Awaiting surgery pathology, so many questions re treatment possibilities, timing etc.
Hi everyone, this is my first post here. I was diagnosed with ILC 24 Feb, had a left mastectomy 17 March with ALND as there was cancer in the sentinel node/s. I have an appointment with my surgeon this week (30 March) where I will find out my treatment plan and pathology results. I had 2 tumours biopsied 20 Feb, both were grade 2, one pleomorphic, the other non-pleomorphic, both are ER and PGR positive, HER2 negative. I was not given the option of reconstruction as the cancer was too close to the skin to safely conserve it. I'm 49, fit and healthy, have been cardio and strength training 4 days per week for over 6 years and have been walking my border collie puppy about 25km per week since Christmas, so I'm really hoping this will help my body get through treatment as best I can. Now for the questions, For those who had ILC with lymph node involvement, were you always offered chemo and then radiation and if so how long / frequent was your treatment? How long after surgery did you start chemo? I have been offered to go on a fantastic relaxing holiday 10-17 April and am hoping to go as we've had to cancel our original holiday plans that were to start at the end of this week. I have booked in to have my eyebrows tattooed (featherbrows), if you had this this done prior to chemo treatment, were you glad you did? If you originally had a single sided mastectomy did you choose to remove the other breast at the end of treatment? The CT scan I had recently found no signs of matastasis which I'm clinging to, however a rather large mature teratoma was discovered on/near my ovary so it is likely I will also have a full hysterectomy including removal of ovaries and cervix. Given that estrogen needs to be blocked and I'm currently premenopausal, this is the likely recommendation given my diagnosis. I will find out soon, but I'm expecting this surgery would occur after radiation therapy. Any other advice is most welcome, xo
Pathology results from surgery
Saw my surgeon today and got my results. He was surprised to find I have two different types of Breast Cancer. I have Stage 1 -mixed ICC in breast and Stage 2 -DCIS in 1st sentinal lymph node. Have an appointment Friday (17th) with the radio. oncologist then 30th March with the medical oncologist. Radioitheraphy is definately happening, aromatase meds also definite. Chemo is unknown at the moment.
Surgery, radio, sleep, and restless legs
This is a long shot, but just in case... I had a mastectomy and reconstruction in mid-December, and I'm almost halfway through radiation treatment. I've always had restless legs, and there's something about major surgeries that seems to make it flare up badly. I had an abdominal hernia/muscle separation repaired at the end of 2020, and the restless legs were terrible afterwards! Anyway, I'm really struggling with sleep at the moment. I'm exhausted, but as soon as I start to feel ‘sleepy’ my legs start to twitch (mostly the left, because, hey, sure, why not?) Last night I think I finally managed to drop off after midnight, but was up from 2-4 am intermittently pacing, doing yoga, stretching, massaging, swearing, and trying to sleep. Then I was up again at 6 doing the same thing. I got maybe 5 hours of broken sleep. And it's been like this for WEEKS. It's like newborn days, only quieter. I'm doing all the things that have worked before: strengthening the muscles that are twitching, stretching what's tight, nerve glides, settling the parasympathetic nervous system before bed, massage, magnesium supplements, reducing overwhelm during the day. This is a crazy complex syndrome, and has many contributing factors. It's intensely frustrating. But I guess that's really only part of the picture, because I'm also still sore from the mastectomy. And the radiation is starting to get uncomfortable. And I want it OVER, but I'm also dreading the end because then I just get to wait and hope that treatment worked. All of that is playing merry hell with my sleep too, or at least with my stress levels. Anyway, my questions for you lovely folks are: 1) Are extremely restless legs something that others have noticed, or am I a shiny snowflake? 2) Any tips beyond that for sleep? 3) Any tips for managing discomfort during radiation? I've got mepitel and moogoo, I'm hiding from the sun like a troll/vampire hybrid, and I'm drinking ALLLLL the water. I still suspect I'm about to develop the worst case of sunburn I've ever had. Owie. 4) Can you ever lie on your front again after implant reconstruction? I'm generally a tummy sleeper, and I'm missing being able to snuggle up in bed like I normally would. Ta muchly ❤️