DCIS - Mastectomy - Recon - clear for two years....now potentially something else
My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis). It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this. Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer.
Private or Public?
Hi everyone, I'm a newly diagnosed in my late 30's. my cancer is invasive grade 1 in one breast. I have private health insurance but the out of pocket costs of the plastic surgeon and aneastetic would be around 14k which is a big figure for me. I'm told if I go private, I can have the surgery as soon as 2 weeks but the puclic system may take upto 6 week. my question is how urgent is the surgery, will a month difference matter? Also I'm choosing to do a double mastectomy to reduce the risk of cancer in my other breast. I'm slim and don't have much fat for reconstruction, implant would be the best solution forward for me. Has people who have gone with implant reconstruction in public system been happy with the result? how does the after treatments look for them? Any public hospital that you recommend in Victoria for the surgery and reconstruction? will the result of the reconstruction be any different if I'm in public vs private? I will be staying upto 3 days in the hospital due to implant reconstruction so really having a shared or private room is not a big factor here. Can anyone who has gone through this privately or publically contact me please?
Gah. Back again.
Almost seven years ago I roller-skated through Olivia Newton John hospital to Xanadu for my last radiotherapy session, post lumpectomy. Here I am again... another oestrogen positive cancer, same stoopid dense breast. It was picked up on MRI as it couldn't be seen through my milky dense breast tissue and after an MRI biopsy (such fun!!!) I was diagnosed last week. So now I'm up for a double mastectomy and trying to make reconstruction decisions. I'm thinking I may need to go the Johnny Diep Flap. Seeing the plastic surgeon tomorrow. Really glad you're here....
First anniversary
I am new to this group... can't beleive it has taken me 12months to find this platform. Possibly wasn't really looking. I was diagnosed with Invasive Duct Carcinoma (no special type) Grade 3, Hormone + HER2 - on the 1st of Nov 2022. I have had a lumpectomy, chemo, radiation, currently taking anastozole 1mg & a hystorectomy. No breast cancer or any cancer (except my sister) on either side of my family. I chose to do a gene test to see if there was genetic link between my younger sister's sarcoma diagnosis 8 years ago & my BC. Curiosity killed the cat and I have the BRCA 2 gene mutation. Unfortunately so does my sister. They are suggesting a bilateral mastectomy. I am unsure whether I should go flat or have reconstruction. I would love to hear how people have made this decision and how their surgeries went. Thank you for reading.
Bilateral Breast Cancer
I was diagnosed with bilateral breast cancer in late September and am scheduled to have a double mastectomy and reconstruction in mid November. Still trying to get my head around it all - it is becoming more real. I have been trying to hold onto my normal for the last few weeks - work and life in general - this is proving more challenging as the days go by. I went to give blood on the weekend - I guess I am not too surprised that I was not able to - in addition to learning that I wont be able to this again until 5 years post the end of treatment. My most recent mammogram (18 months ago) was clear and I was doing doing all the recommended things - go to drs if you notice any change in your breasts. I went to the Drs with what I thought was a breast cyst - having previously had these - and got a referral for an ultrasound. Went to ultrasound appt on the Friday - for what I thought would be 30 mins at most with a possible drainage of the cyst. Not so - 2 hours and 3 biopsies later I left the clinic. Tried not to focus too much on it all over the weekend - however first thing Monday morning I have a call from my GP - and an appt made for the afternoon....it has been a whirlwind for sure.
Unexpected new adventure
This so wasn't what I was expecting at 58. This year has been full of health issues. Thought I was done. Then my boobs go "hold my beer"! Process to diagnosis full of snafus. Up to and including finding out during a phone consult :( Early stage BC. Lump I found in one, became cancer in both. PET scan clear elsewhere. HER2+ in one - in the other. Only relatively small, but seems big to me. That was 2 weeks ago. Glad the initial shock has passed, and the denial. Still doesn't always feel real though. I now have a surgeon and a date - Oct 5. Feels good to have an expert to leave the first big step with. Still lots to learn and digest. I know I want reconstruction, but not totally sure on what kind. Already appreciating the people and resources here 💜 Thank you (the 'adventure' reference is how my husband and I label events in our life/relationship)
Surgery decisions
@Sheeba original post copied from the activity section. I was diagnosed with stage 3 breast hormone positive breast cancer in august 2021. The surgeon said because of the size of my breasts in relation to the tumour, 4cm, I would need a mastectomy followed by chemotherapy and radiation or I could have chemotherapy first in the hopes of shrinking the tumor. The tumour did shrink after chemotherapy and I had a lumpectomy 1st February. This plan seemed to be going so well with only 3 lymph nodes removed (one had a dead cancer cell in it, killed by chemo) and not a bad looking breast left afterwards... until...due to only 0.5mm margins, my oncology team that I needed a 2nd reexcsion for clearance...but then the 2nd surgery had pathology results with further dcis!? The surgeon offered me the choice to do a 3rd reexcision (but if she can't get clear margins I will need a mastectomy and radiation) or to go straight to mastectomy and radiation. I was shocked my treatment plan had begun to go wrong/change...it was so mind numbing I had to ask my husband to decide what answer to give at the appointment and I am booked in for a 3rd reexcision next week. Since then I have been anxious I made the wrong decision and have spent hours researching and talking about how to make the right choice. I am confused because I was prepared to have a mastectomy at diagnosis because the certainty of getting all the cancer out this way, but I was advised to go the lumpectomy route. I hadn't thought I would need to revise the plan again. My breastcare nurse has been very supportive and positive this week, and confirmed that a lumpectomy with radiation has the same survival rate as a mastectomy, only a slightly higher chance of recurrence. My breast is already visibly smaller than the other one and the nipple is pointing downwards. I found my padded bras compensate for this but don't know what it will look like after a 3rd excision and radiation. Am I at the point now where the pros of a mastectomy with reconstruction will outweigh a lumpectomy? Does reconstruction after the lumpectomy defeat the object of less invasive surgery? I am feeling exhausted and the thought of more demanding surgery in a mastectomy terrifies me. I am overwhelmed by the thought of plastic surgery afterwards. Do I need to push myself and choose mastectomy now, because my lumpectomy route is clouded with so much uncertainty and unsatisfactory cosmetic results now? Will I be dissatisfied with a 3rd reexcision in the long-term? I may need a mastectomy anyway. I want to get the cancer out and survive so I am loathe to cancel my reexcision next week. Nobody said this would be easy but I honestly didn't know it would be this hard.
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 ❤️
Overwhelmed
I have just been diagnosed a few weeks ago and will undergo a mastectomy and breast reconstruction later this week. At times it feels so surreal and then there is a sudden sense of feeling so overwhelmed and it is so all consuming. Then find myself trying to keep "busy" and maybe that is my way of avoiding confronting the diagnosis, have spoken with the psychologist which helped immensely. By nature I am a "planner", I plan everything however this feels so out of my control. Thank you for reading/listening.
