Before ANY Breast Surgery
My breast cancer story started the day I made a deal with my husband in October 2006. If he went to see a cardiologist I would get a mammogram. We both kept our end of the deal. He was fine after already having 3 heart attacks 15 years before we married. I was not so fine. I was scheduled for a biopsy a week later. The day after Thanksgiving my phone blew up with calls from doctors saying I had breast cancer. My gynecologist basically said the radiologist saw breast cancer and the surgeon confirmed the biopsy as positive for cancer. What I wished I had done then was more research. IMO had I known then what I know now I would have had a bilateral mastectomy Not the lumpectomy. There is no doubt in my mind I would be healthier now had I made that choice then! Times have changed drastically since then. I thought it was bad in 2007 with all the surgeries, chemo, mammosite radiation, Neulasta injections, and 10 years of Arimidex. I did everything every Dr. told me to do and still in 2022 had a recurrence. What I'm trying to say is I've been there, done it, and Rang the Bell. I feel like an idiot for not watching youtube before my 05/25/2022 mastectomy!!!!! You and you alone are responsible for making these life-altering changes. Everyone's cancer journey is different but I beg you to watch youtube. I already applaud you for finding this site. Sending well wishes, prayers, and blessings for years to come. XOXOXO
Interested in more discussions like this? Go to the Breast Cancer Support Group.
The picture is from week 5 after the mastectomy. I ended up with a bilateral mastectomy on 05/25/22 and almost died the day after, having to have emergency surgery. I had lost 1 liter of blood in 4 minutes BP was 70 over 40. I had 16 different attempts at a 2nd IV line none successful and I remember every second of it seeing my tough guy husband standing in the door crying, He said I was so gray he thought I was dead. After being discharged I was in the ER at least 2 times due to the buildup of fluid in the chest area. I had no less than 5 liters of fluid drained between all the weekly surgeon & ER visits. But…09/15/22 the fluid buildup forced the surgical incision to burst open. I had bloody and green fluid everywhere. I dealt with 3 times daily wound care on myself and laundry every other day for 4 months. Due to chemo, radiation, estrogen blockers, and other medications my teeth were a mess. I had so much infection it kept the 4-inch dehiscence from healing. It was more expensive to repair my teeth than to extract the teeth. So, we got a loan of $10,595.00 and 10/12/22 they extracted all my teeth. The good news is after all the infection in my thick blood the dehiscence started healing/closing : ) No more green-yellow gunk leaking. My loss of teeth has been another nightmare that I won’t bore you with. The debt collectors are relentless and threatening a lien on our home. I pray you to have a better 2023
Wow, you have had a really rough time of it. I understand regrets about not making better decisions, I wished I had pushed for the surgery I wanted in 2004. I don’t think any one type of surgery is right for anyone, also true of treatments. You tube is full of a lot of information, some good and some bad. Can you clarify what it is you are hoping to inform? If I am reading this correctly you think the lumpectomy with chemo, radiation and endocrine therapy was a terrible choice and the fast forward 15 years and you think the mastectomy was a terrible choice. Given what you have gone through, I can’t say as I blame you, but I would like to know what you are trying to tell us.
@auntieoakley What I wished I had done then and now is more research. IMO had I known then what I know now I would have had a bilateral mastectomy Not the lumpectomy. There is no doubt in my mind I would be healthier now had I made that choice then! No, every 6 months 2 hour diagnostic mammograms, no radiation (Mammosite), and possibly no estrogen blockers. I'm saying watch other people's stories, not the Dr podcasts. I was not prepared at all for what I know now to be typical results in both cancer events. All because I had no clue what questions to ask before surgery especially now post-pandemic. They are so understaffed.
Thank you for clarifying that. 😃 I agree whole heartedly about doing research before you make decisions. I learned this lesson in much the same way. I had a partial mastectomy, they called a lumpectomy but removed half. I asked for a mastectomy but was refused, and didn’t know enough at the time to know I could insist.
It is interesting to me how much we choose to trust each other’s decisions about our own bodies. Now I spend time helping others find their voices, which in these times is even more important than ever.
How are you doing now?
Thank you so much for your story. I was offered lumpectomy and mastectomy by both breast surgeon with emphasis on lumpectomy, but I decided mastectomy and feel great about my choice. Not only, but reading about breast implant illness (BII) and other complications regarding implants and the flap surgery, made me choose aesthetic flat surgery unilateral Goldilock. Having mastectomy, and being flat it feels so right and healthy. My intention is to have mastectomy on my second breast. I would like from the plastic surgeons to recommend aesthetic flat surgery and not only implants or flap. Luckily I found about aesthetic flat with three weeks prior my surgery. The breast surgeon could do an amazing aesthetic flat, but the plastic surgeon is recommended.
Again, thank you for sharing your story. I am waiting for my Oncotype test and meeting the oncologist on January 25th. What would you do differently today? Would you still do chemotherapy and hormone therapy?
@polianad22, First Have a Happy Blessed New Year! Let me answer your question. The Oncotype test was not readily available in 2007. It was suggested thru a chat room. As my Oncologist was making an appointment for me to see her in 6 months I asked had my tumor been tested. She said no do you want that? Of course, I said yes. I know I was the first in FL to have it done and the cost out of our pocket was $4,985.00. My result came back as a 33-35 if I remember, which put me in mid-range for recurrence within 10 years. Yes, I would do (Red Devil) and the 2nd bag they hung of different chemo and all the steroids that come with chemo again. I don't believe I would be here if I hadn't. I now think I would Not do the 10 years of hormone blockers again, My Personal Choice. Declining estrogen levels contribute to the loss of bone mass in the spine and hips and jawbone. This raises the risk of getting loose teeth or even losing teeth. Gum disease is another problem that can happen during menopause. Gums can deteriorate as a result of the loss of estrogen. This can cause all sorts of symptoms. All I knew in 2007 was a Lumpectomy or Mastectomy and I did not pay enough attention to the long-term side effects of estrogen blockers. Hormones are in most items we eat. Do your own research as I sit here eating blended food. Thank goodness I have an emersion blender. I'm attaching photos I just took from surgery just 7 months 1 week after. Be happy for me, please. I'm still here. Please Pray for Heidi C. She wasn't feeling well on 12/16/22 and ended up having to call 911 because she could not breathe. She spent 2 weeks in the hospital coming home with a diagnosis of BC for the 3rd time now in her lungs, liver, and spine. She had no clue she was sick again and texted the prognosis is not good.
A good important discussion!
Last year 5/2022 I choose a bilateral mastectomy.
Good choice, but still a long road to fully recovered.
5 weeks of radiation and 14 rounds of preventative chemo with immunotherapy.
Spacers were a challenge for my body after radiation.
Ended with infection 3 times with surgery and stays in hospital.
Coming into 2023 I am excited for 3 rounds to complete my treatments and a delayed reconstruction until March/April 2023.
Of course I will be knitters for 5 years with a survivorship program.
Blessed and grateful even after a difficult recovery in 2022!!
Diagnosed stage 3 grade 3 HER2 positive.
The team of doctors and my ability to let go and have them make the informed decisions with all the data I was able to review, makes me worry less.
I focus on me moving forward and trying to heal everyday!
Better days to all of you that are starting your journey.
Cancer Free feels good, just have to keep focused on looking ahead and keeping in tune with our bodies and the data of our appointments!
@boathouse, Hi, I don't understand…..you had 5 weeks of radiation after the bilateral? What did they radiate? In 2007 I had mammosite radiation. I had to keep my right arm under my right bad girl to support the weight
before and after radiation for many years. I had a golf ball size of dense painful scar tissue. This time my same surgeon said there was a class action lawsuit so they don't do mammosite radiation any longer. Well Hello, why was I not included in this class action lawsuit? https://cancernaturalremedy.org/3063/ I agree we all have different choices to make during different journeys. Doctors and Radiologists were surprised to see me have Stage 2 ER/PR again after 14+ years. BTW, I had 2 different radiologists this time. With 2 different diagnoses. The first suggested a stereotypic biopsy on the left good girl. Ok, did it. LCIS or is it DCIS can't remember. So the surgeon wants to do a Lumpectomy on the good left girl. This is during the pandemic and I'm truly not worried about a small microscopic bunch of maybe cancerous cells. I cannot even tell you how many times they raised my blood pressure due to findings of LCIS and/or DCIS with the "C" word possibility during the last 12+ years. This is mental torture IMO. So, I got the Covid vaccines and went back to my original radiologist. I was shocked and took her expression seriously as she stood there repeating "Highly Suggestive". I didn't need a bad right-girl biopsy this time. The second radiologist made it very clear in her report I had BC again stage 2. boathouse are you comfortable sharing a photo? No worries if not.
January 25th is my 67th birthday. I would love you to have a low Onco as a gift. Insert all emojis of happy, grateful exciting fireworks displays for you.
Had I known I would have insisted on this wound drain. FIVE Months of grueling wound care compared to out-of-pocket expenses?