Seeking wisdom from those of you that have "been there done that"

[Scullerymaid]

Greetings! I hope you are all well (as can be expected) and safe! As I am nearing the end of my chemo treatments - 3 more to go! And will be needing surgery in the near(ish) future, how does one decide which surgery is best? I was diagnosed with triple negative breast cancer back in October. I had 12 consecutive weeks of Ptaxil, Carboplatin and either a placebo or Atezolizumab (pretty sure it's the Atezolizumab). I just started my 4 dose - 2nd round of Doxorubicin, Cyclophosphamide and placebo/atezolizumab 2 weeks ago....Lord, that was a rough ride for 7 days after! As I am anticipating surgery, I'm not sure if I should go for a lumpectomy (the tumor has shrunk from 7.5cm to 3.5cm so far!) unilateral or bilateral mastectomy? I don't have any lymph node involvement and the PET scan showed no other cancer anywhere in my body. I am terrified of recurrence, I won't do this again, I'm.So.Tired.!! After surgery they want me to do 12 weeks of daily radiation as well. Thanks in advance!

[SeattleMom]

Hello, S!

I can only offer my personal perspective. My BC was originally found in 2000, Stage I, no lymph node involvement. I opted for a double mastectomy (one was prophylactic) as my children were very young (9 and 6) and I couldn’t bear the thought of never seeing them grow up, no matter how early stage my cancer was.

I had no further treatment (no chemo, no radiation) and life hummed along for the next 17 years.

In November 2017, I discovered an extremely hard lump in my right armpit. Long story short, it was the return of my breast cancer; and it had metastasized to my spine. I had 10 radiation treatments and from that day forward take daily doses of Letrozole and Ibrance (3 weeks on, 1 week off). So, I am now entering my 30th month with MBC.

Knowing what I know now, if I were in your shoes, I would opt for a double mastectomy. You have an aggressive cancer (triple negative) and a relatively large tumor. I would not take any chances!

God bless you and shine His healing light as you continue treatment. You are in my heart and prayers. Please stay in touch if you have ANY questions. I’m happy to share my journey.

Linda in Seattle. XXOO

[Scullerymaid in reply to SeattleMom]

Thank you so much! I have so much conflicting advice; it's very helpful to hear from people that have gone through this and understand! I hope you are well and staying safe!!

[Curbs]

I was told the best way to get rid of cancer is to cut it out, I agree with Seattle Mom, double mastectomy and reconstruction, the reconstruction is the most important part x

[Scullerymaid in reply to Curbs]

Thank you! I am leaning toward the bilateral surgery, I don't want to go through this again! I hope you are well and safe!!

[Cu4281]

Good Luck and stay safe. You have had many challenges and then to be going thru this during this time adding additional hurdles. I can tell you are a strong person and you will come out on the other side! 🤝🙏😷

[Chick44nzrn]

Hello Scullery maid ( great name) . There are difficult decisions but you sound like a resilient person to me and if it’s any help I’d take every sort of artillery the oncologists have in their arsenal as it’s tougher than most of us can believe but it’s a powerful weapon against the brutish bullying cancer.

Sending you heaps of good wishes and all the best for the Easter break .

Denise x

[Scullerymaid in reply to Chick44nzrn]

Thank you Denise!

I thought the first round of A/C was the end of me! I didn't have the nausea meds quite on track. This last round I had I'm doing much better (if there is such a thing, lol). 2 more to go and I should be done with the chemo by May 20!!!!! I will most likely take the recommendation of my onco/surgical team, they haven't let me down yet! I hope you are well!

[Cu4281]

🤝Sorry you have go thru this during this pandemic time. It is hard enough at any other time. You are strong and you can this. Keep your mind in a good place. Sending you healing thoughts☀️

[quilting66]

Here's my story, I hope it helps. I have/had triple negative bc diagnosed in June 2019 stage 1, invasive ductal carcinoma. The tumor was about 2 cm and my age 66 at the time. I opted for lumpectomy (removal of sentinal nodes too-clear) then radiation first because one margin was a little close. 3-4 weeks of rad 5 days a week. The doctor offered face down rads (right side). Takes only a few minutes (easy) and I had very little after-effects except for redness which developed right after the last treatment. It lasted a couple of months. I can still see it a little. I used Calendula first aid cream 2x per day rec by doctor. Make sure you apply it right up to the collarbone. Began a week later with chemo infusions once every three weeks, 4 treatments. Cyclophophamide and docetaxol. They would have given me one more drug but my age and underlying health issues proscribed it. high blood pressure and mild diabetes. Started losing my hair after 2nd treatment. Opted against cool cap treatments-they looked too uncomfortable. I had enough discomfort to deal with! I bought a wig but only used it a couple of times. It was synthetic, only $30 so no biggie. Had it cut by my hairstylist and it looked pretty nice. Yes, day 3-5 after treatment was really bad, but I went to an acupuncturist for the stomach issues (insurance paid for it) after the 2nd treatment and it was really helpful. Continued until the end. My hair almost totally fell out except for my eyebrows (Yay!) and it's now about an inch long-tho wavy not straight. Developed a darkish patch on my face that went away after treatment ended. I was pretty fit to begin with, at the gym 5 days a week and that was helpful I believe. Good range of motion in my arm, no swelling but I did have an uncomfortable seroma (think interior blister) that was drained in my armpit a couple of times. (Wear that compression bra after surgery! Tho I don't think it did anything for my underarm.) It's finally flattened out. I do have "pulling" sensations across my chest even on the good side, shoulder, torso and neck stiffness but I can deal with it. A little tingling in my fingers and my big toe but the ice packs during the infusions I have to believe helped. I hear some of the after effects last a long time...oh well. I feel for you and am sorry you or anyone has to go through this and I worry a little about recurrence but time will tell. There's nothing I can do except try to stay healthy and have a good perspective on life. At 67 I'm going to be philsophical about my chances of recurrence after all, I've had a pretty long and healthy life. The literature says recurrence would probably occur with the first 5 years then the odds are good I'm clear. I hope that's true. And yes, I like your nickname too!

[Scullerymaid in reply to quilting66]

Thank you so very much for sharing your story! Tomorrow is my last dose of poison!!! I see the surgeon on Thursday, and am anxious about her recommendations. I was to have a mammogram and ultrasound prior to seeing her, but because of the covid they are not scheduling imaging any time soon. I guess I have to be patient. ❤

[quilting66 in reply to Scullerymaid]

Congratulations! Be sure to take a photo. The nurses set up a little celebration with party hats and a song. A wonderful thing to celebrate. It's amazing how fast you forget, though you still have a week to recover from the after effects. But it will all be over soon. Good luck and speedy recovery! Be vigilant with self exams so that you can tell if anything is different.

[BluHydrangea in reply to quilting66]

Welcome quilting66! Wonderful women here!

[quilting66 in reply to BluHydrangea]

Thank you!

[Hidden]

I had triple neg with lymph node positive, chemo for 5 months and they recommended lumpectomy, I had a really hard time deciding which surgery. So scared it will come back but my husband and I decided it was best for doc recommendations, because the risk of it coming back was so small either way. I pray I made the right decision. I have to have 6 weeks of radiation as well starting next week. You have to make the decision that you feel comfortable with.

[Scullerymaid in reply to Hidden]

Thank you so much! I see the surgeon on Wednesday. I will also have radiation after surgery. I am ever so ready to put this nightmare behind me!! I wish you health and happiness ❤