Lumpectomy with radiation vs mastectomy for stage 1 invasive plus DCIS

Posted by windsurfer7 @windsurfer7, Mar 4, 2023

Receiving mixed messages... articles and doctors saying lumpectomy with radiation is better for me... understood that I needed radiation and tamoxifen either way. My mother had similar but was younger with reoccurrence. A former breast surgeon is saying there is more freedom with mastectomy (mostly regarding the need for imaging) and that I would not need radiation and tamoxifen that way. Any others making these choices at this time?

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einnoc | @einnoc | Jun 12 12:35am

I should probably have added that my endocrinologist has said that my elevated liver enzymes (LFTs) could be the result of losing almost 50 lbs., which has helped my knee immensely. I can climb steps without pain later at night now. (I do have to brace it, however.)
Also, I paid out of pocket on the one-year anniversary of my lumpectomy to have an ultra sound (HerScan) at a traveling van place. I flunked and that led me to a wonderful and compassionate Texas oncologist who got me the oncotype and cares if I live or die.
I failed to mention that the University of Iowa oncologist who was my "second opinion" (and is now my only Midwestern oncologist to supervise me when I'm in the Midwest) , when asked why I.C. would not have radiated me said, "Because you're a woman in your 70s."

I also failed to mention that my Dad had colon cancer, which traveled to his liver and killed him 6 months after surgery. Hence, the CT scan with contrast in May to make sure something dire was not happening. It was fine, but we are still trying to pin down the elevated LFTs. Another theory is that the need to take 2 strong antibiotics for one of the (many) UTIs near New Year's Eve gave me a fungal infection, which then necessitated taking a pill for that (Flucosomine or some such) that is not a good thing for your liver.
All in all, I no longer trust 2 of the 3 oncologists I've had, and I am aware that my joke about the new Medical Mantra (YOYO---You're On Your Own) is really true in 2024. Since I was born in 1945, it's been a slow erosion of my trust and belief in most medical experts. Even the experts don't agree, as indicated by the conflicting information regarding radiation. Radiation was not bad and it's all I really can say I am glad I did, as directed by one (of two) oncologists. I consulted the radiologist who had found the tumor on Pearl Harbor Day of 2021 and went forward, and it is probably a good thing in my own case.

Another

einnoc | @einnoc | Jun 12 12:38am

Everything I've read has indicated that if you can keep the breast and have just a lumpectomy, it is superior in many ways, both psychologically and physically. Obviously, this does not apply to those who have high stages of b.c. and lots of spread, but I'm talking about the average presentation like mine, which was 1A, no spread, good margins, 11 mm. 95% estrogen positive, caught early.

elizabet | @elizabet | Jun 12 5:57am

In reply to @einnoc "I wrote a really long response, which won't post. Basically, as a 78 year old b.c...." + (show)

@einnoc

I wrote a really long response, which won't post. Basically, as a 78 year old b.c. survivor, I am so glad that I went through with the 33 radiation treatments, because I definitely cannot and could not tolerate the adjuvant therapy pills (and I tried for over a year). Taking Anastrozole for 7 months caused my already fragile left knee to blow out and put me in a wheelchair for 6 months (September, 2022 - March, 2023), I didn't get an oncotype after surgery because I had a horrible oncologist (Illinois), but I finally got it 17 months late and it is 29, which is not a good score and means I should probably have had chemo. Taking Anastrozole for 7 months and Tamoxifen for 5 months ruined my left knee (I had been in a nationwide study called the MOST study for severe osteoarthritis, so he should not have prescribed the A.I. pills.). It also caused my bone density to decline from -1.4T to -2.2T (I am also a Type II diabetic). Two of my teeth sheared off below the gumline and the dental work started in November of 2023 and took until May 9, 2024 and cost $10,000. (My Illinois oncologist, of course, has denied that any of this was the result of the Anastrozole and said, in writing, "The only side effect of taking Anastrozole is a little bit of stiffness in your hands when you wake up first thing in the morning, and it goes away when you quit taking it." (Complete B.S.) Among the side effects I experienced on Anastrozole: EXCRUCIATING back and joint pain, Insomnia. Blurry vision. Mood swings. Teariness. Brain fog. Vivid violent nightmares, and then my left knee---already fragile from a bicycle accident) ---blew out as I was walking along a Chicago sidewalk to meet a girlfriend for lunch. X-rays on 9/19; 9/21; 9/28 and 11/15 in Texas. The pain caused me to drive to a joint pain clinic in Oak Brook, Illinois and have 32 ml of an anti-inflammatory injected and 6 ml of Durolane. I spent from September 15, 2022 until March of 2023 hobbling with a cane and in a wheelchair and my left knee will never be "right" again. On Tamoxifen, I experienced extreme fatigue and could only be up for 3 hours a day. Also, I had non-stop UTIs and now my liver enzymes are messed up and I had blood drawn for the 3rd time this morning to try to figure out why. (Also had to have a CAT scan with contrast.) Just remember that every drug has the possibility of side effects and there are a % of people (like me) who just cannot tolerate them---any of them. I should have been prescribed Tamoxifen, but that was no day at the beach, either, and if I had a 0 oncotype (instead of the 29 that says I have a 36% chance of recurrence) I would not take ANY of the adjuvant therapy drugs they prescribed. I do realize that everyone is quite different and you may have no bad side effects, but, for me, I'm just grateful that I went ahead with the radiation, because, 3 days before it was to start, Iowa City told me that they would not have radiated me at all, but that is really all that is hopefully "protecting" me now. I just cannot live the rest of my life (I'm heading into my 8th decade soon) sitting in a wheelchair in excruciating pain on the off chance that the pill that is making me miserable will "protect" me. If I have to resume taking one of the toxic pills to reduce estrogen and "protect" me, I will try Tamoxifen in a reduced dosage again, because I could just barely tolerate 40 mg a week (10 every other day), but my oncologist said I needed to step it up to 20 mg. a day and that was the beginning of the end. I quit them all on Aug. 30, 2023. I am apprehensive that my relatively high onco score of 29 will lead to a recurrence, and, as my Texas oncologist said, "I'm not worried that it will come back in your breast. I'm worried that it will come back some place else." And so am I, in the light of liver enzymes that, on May 1 were 78 (ALT) when they aren't supposed to be higher than 57 and, 23 days later, had risen to 145. The taking of toxic substances at our advanced ages is NOT the same as if we were in our thirties or our forties. I am really hoping that the radiation protects me, because the pills were godawful.

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Which breast had the cancer? Was there any lymph node involvement? What year were you diagnosed? Big hugs.

elizabet | @elizabet | Jun 12 6:15am

In reply to @freckle1 "I had a course of radiation at 76, with no continuing issues, once I had recovered..." + (show)

I've heard radiation called "the gift which keeps on giving", so I want to make an informed decision. Did you have a mastectomy? Which breast? Any lymph node involvement?

freckle1 | @freckle1 | Jun 12 3:49pm

In reply to @elizabet "I've heard radiation called "the gift which keeps on giving", so I want to make an..." + (show)

Mastectomy in remaining breast. Some lymph nodes removed - forget now how many. It was a grade 3 aggressive cancer. I don't understand why radiotherapy would cause continuing problems after the burns heal and the fatigue goes away. I'm nearly 77.

elizabet | @elizabet | Jun 12 5:14pm

In reply to @freckle1 "Mastectomy in remaining breast. Some lymph nodes removed - forget now how many. It was a..." + (show)

My husband had radiotherapy on his prostate bed in 2002 and it damaged his rectum. To this day, it causes him pain.

sschafer70 | @sschafer70 | Jun 13 6:01am

Good day, I wanted to write and let you know my experiences.
I have/had stage 2 invasive, triple negative.
I just had skin sparing bi-lateral mastectomy yesterday, and I am also going to have expanders for reconstruction in a few weeks.
There were a few reasons that I did this, but it is a personal choice.
1. Being 54, my thought process is if I have to do the chemo again that it would suck when I am older.
2. I had very dense breast tissue, and get fatty tumors in my breasts all the time, so much so that since august of 2023 I have had 4 biopsies.
3. There did a biopsy of the lymph nodes while I was under and they are clear which means no radiation which we were all hoping for.

Honestly, I am feeling quite well after the surgery and am convinced it was the right choice for me, but again, it is a personal choice.

I wish you all the luck in battling this.

raebaby | @raebaby | Jun 13 1:23pm

I had HER2 positive breast cancer at age 79. I had a lumpectomy and a year of chemo, plus 5 weeks of radiation. I refused Tamoxifen. Other than the first 2 weeks of Taxol and the dose was lowered by 20 percent, it wasn't hard .The chemo was actually relaxing, sitting in a chair under a warm blanket and being served apple juice.
My hair came back in after chemo with curls, better than any hair I've ever had before. It's back to it's straight self at age 82.
I had Herceptin with my chemo for the HER2 positive. I recently saw my oncologist and after looking at my blood work he said he didn't expect the cancer to return.
The most problematic thing is that I had some peripheral neuropathy before, the chemo made it worse and now I can't drive.

karpow67 | @karpow67 | Jun 13 2:55pm

I just did a double mastectomy on 4/8/24 with a stage 0 DCIS in my left breast. My thinking was I just want to be done. I have read and talked to a person who had radiation on her left breast and it fried her heart valve. She ended up with an open heart surgery. That was enough for me. After path came back it was actually stage 1 so moving it to invasive ductal carcinoma. The surprise was there was a 11 cm tubular tumor as well. I was super happy with my decision. Prior to surgery no one could palpitate either tumor. It was not in my lymph nodes and I have a 3% chance of recurrence, which the oncologist said she rarely sees people in the single digits. I do not have to have chemo or radiation, and taken estrogen blockers was my choice. I decided against it. My mental health is 100% better on the other side of surgery. I also do not have to ever have another mammogram. Everyone has to make their own choice this was just my story.

einnoc | @einnoc | Jun 13 10:06pm

In reply to @einnoc "Everything I've read has indicated that if you can keep the breast and have just a..." + (show)

I don't pretend to know how anyone else has felt about the "loss" of their
breasts in any capacity, but I know that---with America's obsession with
our mammary glands---I wanted as little damage done to mine as possible. I
admire those women who have embraced being "flat" and flaunt it, but I
guess I'm not that brave. In my youth and adulthood, my breasts were an
asset to my overall appearance, and it both physically and psychologically
has been a blow to even have just a small dent now in the right breast. I
hope I don't have to adjust to completely losing either one, but I
acknowledge that it isn't worth losing one's life over that particular body
part. Still, to me, personally, it would be a big blow to have to adjust to
the loss of them--or even of one of them. Again, hats off to the brave pink
warriors who have made their peace with such an assault on their bodies I'm
still trying to adjust to the unsightly gash that my lumpectomy caused. We
all do what we have to do, and I'll adjust if I have to, but it doesn't
seem like it would be easy to say "farewell" to that particular body part,
after 78 years as one of my better attributes. I definitely am too old for
reconstruction, I think, but.....

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