This cancer nightmare started July 2014. Let me...
This cancer nightmare started July 2014. Let me start by telling you I went to my doc asking for ultrasound of right breast because I had a lot of pain. I was told it can't be cancer because pain is not a sign (BULL). I preferred ultrasound as going thru peri menopause I was so tender I knew I wouldn't be able to have the mammo. Sure enough I couldn't (too tender) and had to go back to doc to pick-up a rec....what a waist of breath and time off.
The ultrasound was at 4pm and by 9am next morning the doc called with the news I needed a biopsy and a mammo (load up on pain meds and do it) and mentioned how surprised he was?? Doc's reading this, please listen to your patients...we know our bodies.
Well, the results were: Lumpectomy of right breast performed -invasive ductal carcinoma, hormone +, Hers-, 1.7 lump removed. All done within 5 days of being diagnosed. No time to think let alone do research. I refused radiation and chemo and tamox after research and went the holistic route.
Back to doc 3 mths after surgery requesting an ultrasound and was told that since I had refused chemo and tamox that I was refused by specialists (WTH am I not still a women with cancer??). Bless his heart he listened and sent me and I begged for an MRI also which he sent me for, I had another tumour!!!!! Trying to keep this short.... 2 biopsies and 7 mths later (both tests showed benign) I had a bilateral mastectomy with first fat graft.
I couldn't push hard enough to hurry because I was listening to my gut! Nobody else was in a hurry. So here I am 3 weeks post op and just received my pathology report at my post op check up that I have active cancer in the right breast .....ugh!!!! How are we to feel confident in these damn tests??? So ladies please trust your instincts and YES pain can be a sign of cancer, this should be added to the list of signs everywhere.
I thank sweet Jesus that it has not spread into the lymph nodes, but if I had waited the year that they suggested for tests then God only knows what stage I would be at now! They are still recommending radiation, dang it all that is why I was proactive and did the mastectomy. Still have to see my PS to see if this will affect my new fat?
Happy healing everyone and I hope this info helps someone in this nasty fight of our lives. I will add pics when my daughter is home to help lol. Try and keep a positive spirit as it keeps the stress hormones down and that helps us heal. And I have appreciated all the sharing of info from everyone here on realself, what a wonderful site this is. BTW these surgeries are not for sissies (lipo hurts like a $%#@&) so lets give ourselves a pat on the back for being strong women. If we can push out babies we can do anything right. And please don't let details scare you off any type of surgery, life is the end goal and feeling whole is the prize...keep your eye on that prize.
Above pic was months after lumpectomy in 2014
Sorry new to posting. Should have explained that the pic was a few mths post lumpectomy. Not sure how to add from camera to site, will get help with that ASAP. That was the start on the crazy train wreck ride you get on with this diagnosis. My pics of the bilateral mastectomy 3 wks ago to follow. I am 22 days post mastectomy NOT lumpectomy. Sorry for the confusion.
?? To all regarding radiation
I am killing brain cells trying to research risk vs reward with radiation after bilateral mastectomy with small margins? Any indepth knowledge would be greatly appreciated. I have a few wks to make a choice. Thank you
Fat grafting helps radiated breast tissue yay:)
I knew this to be true but not sure the wait time after radiation. Seems it's up to the PS to decide when. Bless Dr. Khouri for his informative website and creating the Brava system. I unfortunately have to take the radiation to make certain there are no remaining microscopic cells left from the small margins of mastectomy. Can't add fat to a questionable area. I get that. So just waiting for appt and praying for minimul damage to the area so we can push forward.
Eight Week Update
Feeling pretty darn good considering a major surgery like a bilateral mastectomy and fat injected into pectoral muscles. That hurts like crazy, feels like rocks under the skin. I thought that it would soften real fast, but NO. Most of it is soft now but still some hard patches. I am hoping after that pain that the radiation doesn't dissolve all the fat on my right side, it was not easy to come by. As for the lipo side of things, No CAKE WALK, I still feel some picking and burning but thank goodness I was not that bruised. Only had to take a little fat to make my social bump "as its so lovingly called". I retained most of the fat at this point which is great results. The next harvest after radiation will be larger and that scares me :( I wore the compression garment for 2-3 wks and that had to go, digging in all the wrong places. Next time around I will get the zippered one I think, spanx forget that, couldn't find a size to fit and not like I'm obese just 20lbs over weight, as are most menopausal women I think? I just keep telling myself,......it will all be worth it for the end result. OK that's it for now, still love both my surgeons. will update after radiation ends. BTW chose 3wk lower dose vs. 5 wk protocol, as it saves the skin being damaged by 25%. If you can have this method I would ask because 10 yr study shows 1% difference in outcome for reoccurrence between these two methods and I feel my skin needs this edge for what's to come. Healthy healing to all xo
Done like dinner....3 wks (and 1 day) of radiation... negotiated 16 day dose vs. 25 days
11 Jul 2015
3 months post
I say done like dinner because I feel like I've been cooked, that's even what they say on your last treatment..... don't use any healing creams on the skin or take any antioxidants etc as your still cooking inside for 2 weeks YIKES!! And when your so excited to be finished they say "the worst of the after affects will peak at 7-10 days AFTER your last treatment".
I never gave any thought to how the area would look either, so I now have a real pretty square shaped sunburn/tan on my right boobie lol. Gotta laugh or you'll cry. So I will follow all instruction and wait to clean this carcinogenic agent out of my body with a healing cleanse and healing oils and creams for my poor skin. We must protect our organs, btw I went ahead a took a tablespoon of flaxseed oil plus 1/2 dose of iodine daily. The flaxseed protects the body from DNA damage and the iodine to protect my thyroid for radiation uptake (if you are low in iodine your thyroid will uptake the bad rad not knowing the difference from bad or good). I had a immune reaction after my 1st treatment (I have hashimoto's thyroiditis) and my thyroid swelled, sight, hearing etc got attacked. When I spoke to radiologist about it I was told it had nothing to do with treatment, are you kidding me??? Any naturopath will say it has everything to do with it!! There is no safe level of radiation and that is why it was so challenging to agree to accept this treatment. My response to her was, never say never as the medical profession can't even figure out WHAT cancer is and how to cure it. We must stay open minded listen to our gut instincts.
Speaking to that, I must commend Cancer Treatment Centers Of America. They take a team approach to healing and curing and this team includes naturopathic doctors. And they have a super percentage of healing people when they were told there was no further hope!! Cudo's to them for being open minded because really they call natural medicine ALTERNATIVE when really it has been around for thousands of years and reg medicine only a hundred or so.....So REALLY shouldn't it be the other way around???
Shame on the big pharma companies for holding the medical schools hostage to train only in how to cure with pharma drugs only and making natural medicine look like whacko's. OK enough on that subject, sorry but it infuriates me to think that there are drug free healing properties in plants that they are trying like crazy to duplicate so they can sell them as pharma but they never work the same when not in plant form and so they are not recommended as safe ARGGGG.
Back to treatment: the first 2 wks went well but the last wk was when the sunburnt affect to skin started. It got pinker and pinker with each treatment and by last one was soooo itchy. Tried over the counter hydrocortisone cream but didn't work so was prescribed a stronger form of the same. It worked after 2 days (3x daily). I only felt tired when I had the autoimmune attack and don't want to jink myself but feeling ok so far. I am also keeping the Glaxol cream in the fridge for an extra cooling affect, my rad tech's at the hospital were great and mentioned this to me (thanks gang). I have also used pure aloe vera gel from wholefoods but nothing 2 hrs prior to treatment of course.
Just waiting for this 1 month hump to heal so I can get back on track for my next fat fill ;) :) I am praying my skin will stretch, I definitely do feel that my it would have been far worse with the 5 wk treatment vs 3 wk for my skin integrity. The 10 yr. UK research papers I read it indeed showed that the outcome was virtually the same (0.5 difference between the two) they are in stage two of this study today seeing if a 1 wk treatment would yield the same results, wouldn't that be wonderful. Oh yes, you receive a tiny bit radiation each time to shorten the length of time but the overall dose is smaller.
Well, that's it for now. Healing vibes to all and I hope this info enlightened someone trying to navigate this whirlwind ride called CANCER.
Never forget to CELEBRATE!!!!!!
12 Jul 2015
3 months post
How could I have forgotten to mention that on my last treatment day my husband, daughter and I had a celebration dinner. They are so wonderful and supportive. We had 1 glass of red wine (for the healing properties of the resveratrol) and a beautiful Indian food dinner ( with the healing properties of turmeric). It was so much fun, and I am very blessed.
Please don't forget to celebrate the strides you make, it may seem like your a drone at times just following along mechanically doing what is prescribed. But never forget we are psychological and spiritual beings and the physical treatments seem to overshadow this at times. So kick up your heals and say "hey, I jumped another hurdle and I'm that much closer to a happy ending".
God Bless and happy- healthy -healing to all.
3 month wait after radiation until next fat grafting
27 Jul 2015
3 months post
Well just because I have time and feeling ready does not mean it's going to happen. Bummer really but I trust the advise of my Dr. We will wait until mid October for the beat up skin on my radiated side to heal before starting the brava system. In my heart I know this is good advice because reading the posts from fellow realselfers brava is hard on the skin. Just wondering if when I start if there are any tricks to save the tender skin before blisters etc even get started? Healing vibes to all ;)
My love/hate relationship with BRAVA is about to begin
15 Sep 2015
5 months post
My skin has healed very nicely after radiation ( I attribute this to 3 wks vs 5 wks of radiation and to all the natural creams I applied after waiting the 2 weeks post radiation as required). Also I used pure Aloe Vera on my skin during treatment.
I picked-up my Brava system at plastic surgeons office yesterday and they have a young lady there that goes through the process with you. I think this is a great idea as it is over whelming and to only have phone advice without eyes on the situation is not the best solution I believe. We did a run through and good thing too as we couldn't get suction. Turns out that because of my skin retraction I have areas on my sides that gape so I have to place the domes more to the sides to create the seal.
As for the love/ hate.......it hurt like hell on my right side which is the side that had the cancer. Yes both my breasts are removed but the right is still more tender and with the radiation probably always will be I guess. But my sides are still tender after 5 months so when she started the black bulb pressure gage just to 1 it was like " holy sugar how the heck am I going to endure this for hours a day????" I won't lie, there were a few tears shed. My PS doesn't like to use the little electric pump that comes with the system, instead we are using the huge gage and black pump bulb. I am going to look like Dolly Parton daily because he also doesn't want it worn at night as it might lose suction while asleep and you have to add many days if this happens and we only have 3 wks till surgery. I get it but I said how do ladies go to work with this contraption?????? and having to adjust the pressure every hour!! CRAZYINESS!!!
With all that said I was the one who signed up and begged for this type of NATURAL reconstruction so I will grin and bare it. What choice do I have really. The idea of this in theory is wonderful, then try one of these puppies on and that all goes out the window LOL. Maybe if I wasn't so sore from the goings on in the past year (lumpectomy in July 2014 then mastectomy April 2015) it would be easier. Anyway there are plenty of women who have walked this path before me and many more after so I too will start my march in a couple of days. I just pray to God I can do it, I'm thinking of taking a Tylenol or something if things get a little too intense. I can feel my skin has adhered to my ribs a little and I hope this is going to work to pull it off to create the envelope needed for the fat. I know I'm in the best hands with Dr. Brown...he'll know what to do, I just have to do my part.
I will add additional prayers daily to keep me safe during another surgery and to guide Dr. B's hands to rebuild what has been lost to the beast.
My best to all and I hope this helps someone through the process. I will continue to post thru this process because I am so thankful for those before me that did the same.
Half way there ....ugh
28 Sep 2015
5 months post
Surgery in 10 days and been wearing this torture device for 1.5 weeks. The skin has stretch but not like I thought, was thinking like a loose hanging envelope. NOT!! It snaps back after a few hours of non wear. Wearing 6 hrs a day on high pressure non stop with black bulb and pump. That's enough to send anybody crazy really. My boobies are beet red/purple in the domes, scary really. I called the PS office first time to make sure this was ok and not harming me. Yup all ok I'm told, really ???!! because this seems crazy to me. But after wear they return to normal.
Aren't we amazing healing human beings... It boggles my mind really.
And hey can't my skin everywhere else retract like this, oh no that would be a perfect world right... Only where you don't want it to it does. God must be a comedian for sure.
Positioning is everything with this device. It took a full week to figure out where to place them so they don't pinch, pull or cut off the circulation to my arms argh. I angle them sideways and it does the trick. Some times higher then lower to give my skin a rest. I get my work done before or after wear because these puppies are in the way big time. Bent over the washer to get some cloths out forgetting about them and nearly knocked myself out, no joke. I should have a huge round ring of a bruise where it banged in but I don't ??? Just lay low while on is the best bet.
I should be a travelling Brava help consultant at this rate lol.
I really just want this to work after all this BS.
Dolly Parton Jr. Signing out here
Feels like I'm wearing a bag of cats!!
Wow I would never wish for huge breasts again. God bless you well endowed ladies out there. Talk about hard on the back, and these suckers don't weigh half of the real fatty things. I try and hide these crazy things the best I can, it's true construction workers go crazy :( (try to avoid at all costs).
1 more day of 12 hour wear and then off to surgery. Please lord don't let the PS say I have to wear this post surgery..... I can't imagine on sore ,bruised ,swollen breasts even putting this on ..... ouch!!!!!
12 hours of wear
Well this is what he has to work with tomorrow gang. Here's to hoping he can pop these puppies out and I will have a small round breast. Pleassssee let this work.
Chat at ya later y'all.
I made it but it was ruff, stayed overnight and don't even do that the day of mastectomy!
Too weak to write too much right now sorry. Just home from hospital. Was supposed to be a 2 hour surgery but took almost 4. Left side a breeze but right radiated side tuff to remove retraction. In recovery they had to perform a bedside surgery because of blood clots / excess swelling :( almost had to go back into surgery to flush and loose all my fat ... Thank you sweet Jesus my doc is fast on his feet. What a God gifted man. Doc kept me for observation just in case. I fainted /crashed in bathroom just after so that was that for staying in. Home now weak so update later y'all. Thanks for prayers
Very weak , light headed feel like crap but this too shall pass .....ugh
11 Oct 2015
6 months post
I guess we think we are strong and healed from how we look on the outside but what's going on in the inside is a different story. I will now take into account my age and last surgery date before even thinking of another. This is a lot on a poor body. Could only tolerate half a singe bath sitting up today, that's nuts. I was singing along thinking this would be a breeze compared to the mastectomy. Just a little boob job lateda..... NOT! Bless everyone before and after me that needs this done.
Beware of oxy-condone back to hospital by ambulance
11 Oct 2015
6 months post
Low blood pressure with dehydration..., that's taken as directed. I don't even take an aspirin outside of all this mess so just overly sensitive I guess. Now just take extra strength Tylenol for me thank you !!!!!!!!!!!!!!! Please beware very very strong stuff. I will grin and bare the pain thank you very much.
Here we go again :0
Surgery in 2 days from today, have been wearing the torture contraption for 3 wks now. I must admit it does NOT get any easier.
My daughter does not want me to go thru more surgeries and I totally understand her position but I explained that she does not have to feel the pain of the adhered skin on my radiated side daily. I will be happy with a left breast and a pain free right one. With no complications of course like last time ...please ...please ...please.
I find it difficult to write a review when it was so negative and would never want to scare anyone. I still believe so strongly in this natural form of reconstruction.
So on that note I am staying positive, praying and hope I can write the next review with a big fat YES I kept the fat :) this time.
Slow and steady wins the race I guess
Just thank Gods grace this time around was complication free. Right side always a disappointment but that's the nature of the beast ( pun intended )
Taking iron for mths now and absolute direction as to no opioids I believe made the difference. Also no legs touched just abs and flanks. I just pray I hold almost all of this good ol' fat of mine.
Please please let it stay I pray.