Lumpectomy

macdebbie

I was diagnosed with IDC - ER/PR+, HER2-, low K1-67 score (3%), tumor on the right side. Grade 2, on 7/29. Size of the tumor is still in question. Estimated at @6mm. I am scheduled for a lumpectomy on 9/14 and have my pre-op visit today.

Is it normal to second guess your decision? I am most worried about recurrence. It seems that a lot of the people I know who have had a recurrence initially had a lumpectomy and then ended up having to have a mastectomy anyway, and the people I know who have had a mastectomy 20 years ago did fine and have never had a recurrence.

I know statistics say otherwise, that there's about a 2% difference. How many of you on here who have had either a lumpectomy or mastectomy have had a recurrence? What kind of treatment did you have - radiation (what type), chemo, endocrine therapy (Tamoxifen or AI)? Did you have Oncotype done?

At this point I care more about my health (and a recurrence) that what I look like, although if I had a mastectomy I would get reconstruction. I initially thought having a lumpectomy would be less hard on my body (shorter, less involved surgery, less to go wrong, shorter recovery period), but is that wrong since lumpectomy requires radiation which comes with its own collateral damage - heart disease, lung disease, possibly angiosarcoma, weakening of the ribs? I work for myself from home and have a pretty light schedule so recovery time is not really an issue.

I will speak to my BCS of course about this, I just wanted some real world experience and thoughts from people with my kind of cancer who have been through this.

Salamandra

My tumor sounds similar to yours, but more than twice as large. I had lumpectomy alone. I had Oncotype (<10). I'm doing hormonal therapy, though it took a while to find one with bearable side effects). It's been 3 years and so far I'm very happy with my decision. The radiation was not hard on either me or my body. As soon as the doctor told me that stats were as good (or better) with lumpectomy as with mastectomy, I felt huge relief, and that feeling guided my decision.

Remember that there are circumstances where you could have a mastectomy and ended up needing radiation anyway. One can also always cut more, but not less.

We collect medical statistics for a reason, so that we're not limited to making decisions based on anecdotal data from the people we happen to know. If I'd made my decision based on folks I knew who had breast cancer (or to be more specific, folks that I knew that I know had breast cancer, which was an even more specific subset because it turned out there were more than I knew about it), I might have decided not to do any treatment, spend all my money on fun, and wait to die - because overwhelmingly it was fatal within 5 years to the extremely small sample set I had in my own circle. That would've been really misguided.

Doing mastectomy with reconstruction undermines some benefits of mastectomy, which is less screening and easier screening for recurrence, and it also really increases the chances of things going wrong (in small or large ways).

But this is a very personal decision and one that you have to live with.

1982M

Hi Macdebbie,

I’m still pretty new to having breast cancer. It’s a scary time choosing what’s best. I initially went in wanting a unilateral mastectomy but in the end chose lumpectomy (at-least for now- I’ll see after genetics are back since I’m 39). I still find myself thinking about it, but bring myself back to why I chose lumpectomy plus radiation.

There’s not just one, but multiple studies that say mastectomy in early breast cancer isn’t better for survival outcomes vs lumpectomy with radiation. I thought I was ok with mastectomy until I realized how difficult reconstruction can be. The recovery from a mastectomy and reconstruction would be a-lot. I read articles about quality of life as well to help me decide.

My aunt had breast cancer and a mastectomy and died from it within a year. I don’t think lumpectomy was ever on the table with her. My grandmother had cancer, had a unilateral mastectomy and then 10 years later had cancer in the other breast. Had another unilateral mastectomy. She died from other causes unrelated to breast cancer. My other aunt had a lumpectomy with radiation at 70 and is taking hormone blockers. She’s been NED for several years (3?). All different experiences, choices and outcomes.

I am doing chemotherapy and immunotherapy along with radiation and then hormone blockers starting with chemo in the next few weeks. I can choose to remove radiation and add mastectomy after chemo if I change my mind.

We all know nothing in life is guaranteed. Make the best choice for you and what’s important to you.

The one thing my surgeon said to me was “We can always do more later, but we can’t go back” so we started with lumpectomy.

Esther01

Hi MacDebbie,

Sounds like you've gotten excellent advice.

As for the radiation, I think you mentioned that your lumpectomy is on the right breast, not the left, like mine was. It is with the left breast that radiologists have to take much more care to protect the heart such as DIBH (deep inspiration breath hold). With 3D/IMRT they have a way to protect our organs and minimize the effect on healthy tissue. There is one tiny spot at the top of my lung that might be touched, but that's because I had 5 positive nodes so they had to include the nodes at the top of my chest. It might show a tiny bit of scar tissue on an xray but I'll still be able to climb Machu Picchu without any difficulty, according to my RO. (I have no plans to go to Peru, but it's kind of nice to know that I could). I'm now halfway through radiation.

I know you're in the home stretch now with your surgery prep. I hope it all goes very well and that you are also plugged into the August or September surgery groups. I received so much support from those groups when I went through surgery.

Blessings,

Esther

macdebbie

Thanks everyone! I think it's just surgery jitters. I do feel this is the right plan for me. I just wish I could get the surgery part over with! It's stressing me out.

oldladyblue

Hi macdebbie and all, I just had a lumpectomy in July. Looking back on the surgery, I was way more scared than I needed to be, it went fine, the pain was minimal afterward. My doctor did not recommend mastectomy, he said it was not necessary medically. His original plan for me was lumpectomy, then radiation, then hormone therapy. But the after-surgery OncotypeDX test suggests I am at moderately high risk of recurrence with a score of 28, so probably chemo is the next step. Now I am scared of the chemo, mostly of side effects. I was hoping to avoid chemo. My first consult with the hematologist is next Weds. I am 64, soon to be 65, and still a bit in shock at having cancer and treatment in my life. I hope I can take the future treatments well, I've had a good healthy active life up until now. I have a friend of a friend who was not lucky after a double mastectomy, as the cancer came back very aggressively. So, mostly I am trusting my doctors as to what is best for me.

macdebbie

oldladyblue, thanks so much for your report! So glad your surgery went well. I am sorry to hear about you having to have chemo. I am not familiar with all of this yet. Did you have lymph node involvement?

Best of luck with your therapy and thank you for sharing. It is certainly a new world.

farmgirl888

I had a lumpectomy with IORT, surgery and recovery was easy. With IORT I didn't have to go through a 4 week radiation treatment.

see the post under radiation

https://community.breastcancer.org/forum/70/topics/880801?page=1#post_5692939

oldladyblue

Hi macdebbie I am sorry that I didn't see your post to me until now. No, I didn't have lymph node involvement. I am conflicted about doing chemo or not and trying to sort that out. For sure, there will be radiation and hormone therapy. I wish you best of luck too with your treatments. It is a new scary world we are in, glad to have this site to connect with other.

Cancersux2021

hi, I was diagnosed with IDC stage 1 estrogen positive on July 30! First Mammogram ever! Lady called me to tell me and told her she had the wrong number, she was like this is Cindi right, I said yes, but you have the wrong number and I was driving on the freeway 🤦♀️

I got a lumpectomy on 8/20 and they removed lymph nodes and they said not in my lymph nodes and they had clean margins it was 1.3 cm. I see the oncologist next Thursday. I don’t have no clue when you all are talking grades and numbers from something what they recommend but I don’t want to do anything else cause they got it all. Don’t want to have a secondary cancer from radiation or a recurrence. I did genetic testing the 84 panel and not one of my genes have any mutations. That thing said 2.4% recurrence so I don’t feel comfortable with radiation or chemo or pills. Almost 4 weeks out from surgery and still have pain, stabbing and breath taking pain and so tired! Haven’t told anyone in my family just my husband to be. Can’t they just do follow up mammograms to see if it comes back? Or what will the oncologist appointment bring will they do a pet scan and check elsewhere before recommending any kind of treatment.

Thank you in advance for any suggestions or answers, in uncharted waters here big time

ubershop7

Hey Cancersux2021 well....my advice is meet with the onc and go over your options. Sounds like you need more info on your tumor like how big is it, is it er pr positive or her2 pos? Clean margins? This will affect your options. Mine was multifocal er pr pos. Was grade 2 at biopsy, then I guess it got angry from all the poking, and was grade 3 when the tested after surgery. No nodes involved and no vascular invasion. Clean margins, although one area was close margin. I had rads and I elected to have a bso so I could take AI rather than Tamoxifen or monthly injections to shut down my ovaries. Clot risk and SE lower with AI's. I was also 51.

You are doing great, as I could not keep away from doctor Google. I did the same as you, and hung up on the imaging company when they called me. I felt no lump. I thought they didnt know what they were doing as I was there an hour for a mammo. My gyno called me later in the day and she said I needed to take this seriously. She read the report and emailed it to me. I trusted her. I didn't tell hardly anyone either at first. Looking back, I think it was because I could only face that I had breast cancer one baby step at a time.

I wouldn't do just nothing. Your odds of recurrance will go up. The onc will tell you that. Rads will reduce risk of recurrence by 30%. If yours-are er pos, then hormonal therapy will reduce risk even further. If triple negative (er, pr, her 2 neg) or hr2 pos, then they will likely prescribe chemo.

"Moose and Doc" was a great animated site that I Googled. Theres alot of info out there. Stay away from the negativo stuff. Plenty of that, too. My mom had stage 2 bc back in 1983. Lived till she was 90. No recurrance.

No, they wont do a PET scan.

I didnt meet with an onc until the end of my rad treatment. Is it a rad onc your seeing, or a med onc? They usually start rads about 30 days out from your surgery.

PM me if you need more support:)

Salamandra

Hey cancersux,

Sorry you're dealing with this!

It never hurts to run your symptoms by your doctors. For me, my SNB site had a lot of nerve stuff going on and it really helped to hear that it was normal and would settle down.

There's a lot of info to take in at the beginning, and it's worth being open minded for follow up conversations. It's possible that the number you have taken away (2.4% chance of recurrence) is assuming that you have radiation and/or endocrine treatment. My impression is that most docs won't agree to do a lumpectomy *unless* a patient is intending to do radiation, and will otherwise recommend mastectomy. Radiation makes a big difference for preventing local recurrence.

Depending on your cancer hormonal status, whether you are recommended chemo is usually guided by Oncotype results. But they don't (yet) have ways to personalize the decision for radiation and hormones.

Radiation helps prevent a new local recurrence, which helps prevent the stress of going through all this again. But it also helps prevent the chance that you have a sneaky local recurrence that spreads to your body and can become stage 4 cancer before the local is caught. Hormonal treatment helps in case the cancer has or does get out to the rest of the body, to prevent it from growing enough to become distant cancer. Local breast cancer won't kill you, but distance cancer is almost always considered noncurable.

Many of us who grapple with the decision about radiation and hormonal therapy, and decide to accept them, are ultimately driven by our concerns about distant recurrence, not local recurrence.

You don't need to decide everything at once. This time has a lot of waiting for test results and info in drips and drabs. But you should have a medical team that you feel comfortable asking about your reservations and thoughts about other forms of treatment, and who respond to your questions with transparency and thoughtfulness.

Good luck and hang in there!

BCinfoseeker

Hello CancerSux -- I'm sorry about your dx. I found this "Guide to the Breast Cancer Pathology Report" link below to be super helpful when understanding all of the terms and your specific diagnosis. Print it, get your pathology report and other diagnostic results, then take a couple of hours, sit down, take a deep breath and complete it. I was shaking as I did it but then felt better afterwards.

https://www.breastcancer.org/symptoms/diagnosis/ge...

Also, a guide to understanding the acronyms used on this site: https://community.breastcancer.org/forum/131/topics/773727?page=1#idx_1

xoxo

Cancersux2021

I don’t want anyone to know so I can have normal life around them and don’t want them talking about it and especially don’t want to see my son, my Mom, Step Dad or Brothers cry. I’m so pissed still at the surgeon or doctors whomever, I don’t trust them. They sent me home with NOTHING after surgery. Told my fiancé she can take Tylenol and Advil. He was pissed, he said she woke up screaming in pain out of anthesia and you told me I was suppose to pick up her pain meds in the hospital pharmacy. They gaslight you, make you feel nuts cause your in pain. I want to beat my head into a wall the pain sucks and they suck cause now I won’t talk to them anymore about pain cause when I got out of surgery they told my fiancé she’s just emotional. He was like, I’ve seen her cry 3 times in 7 years. She’s not a fragile flower. He was a medic in the military for 8 years. He is so sweet and has wonderful bedside manner and shows me how much he loves me everyday. I’ve been doing bitter raw apricot seeds eating 20-30 a day. He said he didn’t like the surgeon after we left the consult and set up the surgery cause she snapped at me when I said I’m not doing radiation for 7 weeks she said it’s 4 weeks and I said let’s get it out and go from there. She told me how Lucky I was to have this cancer. I wasn’t buying what she was selling! But she knew I didn’t want radiation before surgery so if I should have gone take them off and be done. I don’t want to have other issues and suffer cause they won’t help you. No I dont have the info from when they took it out of it stayed the same as the biopsy showed all I know is estrogen positive not sure about the other ones and I did ask my primary doctor about the gene test and he said that 2.4% recurrence was not taking chemo or radiation into the mix. So if radiation and chemo can increase your chance of a new cancer and if that percentage is higher then 2.4% why would I do anything else sorry all over the place. I’m just pissed and still hurt and don’t want them to over treat me!

oldladyblue

Hi Cancersux, I am so sorry you are mad and still in pain. Just so you know, I was also sent home after surgery with no meds except for I was told to take tylenol. Did you do a surgery follow up exam with your surgeon? You should have had one after two weeks, and he would be the one to tell you were still in pain, and if it's after 2 weeks, even now you can call him and tell him you are still in pain.

Also, It is normal and usual for there to be talk of chemo, radiation and hormone therapy right from the very first diagnosis regarding preventing prevent future recurrence in either the breast or in the lungs, liver or bones (as breast cancer can come back in other body parts). If you don't like your doctors, you can get a second opinion at another doctor's office.

Cancersux2021

thank you so much! I had surgery on 8/20/21! I had a follow up set for 9/08/21 but I got Covid and couldn’t go to the post op appointment, infectious disease department set my post op appointment now to 10/06/21 soonest appointment they could get me in with my surgeon. Only reason I knew I had Covid was I absolutely smelled nothing and couldn’t taste nothing! No fever, no cough, I was tired and hurting from surgery so don’t know if Covid made me more tired. But I still can’t taste or smell anything! good to know that they talk about all the treatments at first and doesn’t necessarily mean after the surgery that will apply to you. I don’t want to be a patient where they just follow the hospitals protocol and that’s what they say you need to do. I pray they will listen. But I see the medical oncologist on 9/23 before my post op appointment with the surgeon on 10/06 so hopefully the oncologist medical doctor will know all the results from my pathology of the tumor they removed and not just going off the biopsy results. It’s really sad that hospital protocols are set so patients that need pain meds aren’t getting relief and making you feel like your nuts cause your in pain. I’m having a hard time believing that doctors are doing what’s best for the patients and just doing what’s best for the hospital organization and just towing the company like these days. Scary! That’s why I’m wanting to be done if my reoccurrence rate is lower with nothing else done versus rate of getting a new cancer or it again from Radiation, chemotherapy or the hormone pills. My dad had chemotherapy for Leukemia and after three weeks of chemotherapy it killed him it caused heart failure he was 61 and never sick a day in his life no meds ever strong heart no high blood pressure not over weight and physically active and in good shape. I’m praying and eating lots of bitter raw apricot seeds. I sure appreciate you sharing your knowledge and wisdom with me! Please keep sharing! God Bless you on your journey as well!

Cancersux2021

thank you I will I don’t know any of these terms and once I get my reports from pathology cause they removed it I will have a better idea. Thank you for your help. God Bless you

Cancersux2021

thank you for your kind words! I did tell the surgeon I wasn’t interested in radiation before my surgery. My 84 gene panel said 2.4% chance of recurring and I asked they said that number has nothing to do with if I’ve been treated with chemo, radiation or pills. It’s just 2.4% with doing nothing other than cutting it out of my body and having clean margins and nothing in lymph nodes and I don’t have any in lymph nodes they removed and they said clear margins. Makes sense when making that decision of not wanting to get a distant cancer but I’m scared of doing a treatment and getting a distant cancer cause of the treatment! Yikes I’m going in circles and driving myself bonkers! I’m praying and keeping scriptures I write on little pieces of paper in my pocket so I can pull it out and read it whenever I need to. Thank you and God Bless. Knowledge and wisdom from you and others is greatly appreciated!

Beesie

Cancersux, are you referring to the Invitae 84-gene panel? I thought that this panel tested for genetic mutations; I wasn't aware that the results had anything to do with projecting recurrence risk for an existing diagnosis of cancer. Was your cancer tissue tested or just a blood sample?

Just guessing here, but could the 2.4% be your risk to be diagnosed again with a new primary breast cancer? If that's the case, those results would have no bearing on the risk your face from your current diagnosis, for either a localized recurrence or a metastatic recurrence.

oldladyblue

Hey Cancersux! Being patient is hard. I'm very sorry you lost your father. My mother and her mother died of liver/colon cancer, mom at 48 years old when I was 20. I've been scared of cancer and chemo all my life.

Please call your doctor and see if you got an OncotypeDX test on your tumor, the genomic test for predicting whether chemo will have any benefit for you. It is not the same as a genetic test. Ask if you got an OncotypeDX test done on your tumor after lumpectomy, OK? To decide on chemo I feel you need your OncotypeDX score.

Your cancer sounds like mine. I didn't want further treatment either, just surgery, but I decided to get chemo, radiation and hormone therapy. I have an OncotypeDX test, scored 28. Look up that specific test on the internet, there is a great explanation of its use. Seventy percent of women with the type of breast cancer that you and I have can skip chemo if their score is 25 or below.

I hope that your terrible stress can lighten and you can be calm and collect all of the information you need to make decisions about your future treatment. Get your pathology report. Get all your numbers. Then find out what they mean. Breast cancer CAN come back. Further treatment isn't a hospital scam. Radiation for breast cancer doesn't cause breast cancer to recur. It kills any stray cancer cells that might still be in your breast, microscopic and undetectable. Please try to gather data, ask questions, etc., before you refuse treatment. The mom of my friend had a double mastectomy in Mexico years ago and refused further treatment. Her breast cancer came back aggressive stage 4 and she is dying now. Please, I feel you must find a doctor you like and get all the data before you refuse treatment.

Cancersux2021

Thank you, the oncotype and all that info will I get that on Thursday when I go for first visit with medical oncologist? Thank you for explaining this stuff. I thought I was being positive with all this but I’m realizing now that I’m using positivity to cover up Denial!

Any problems with your lungs or heart from Radiation on the left, mines left too!

Thank you

Cancersux2021

They said 2.4% recurrence from that 84 panel and yes it’s that invitae one I did. So basically I have to wait to see what the medical oncologist says on first appointment this Thursday. I hope they will give me all the info on the tumor removed. Thank you for reaching out and sharing. It’s definitely helping me. Thank you

Roo73

Cancersux, you're in a really tough place and I hope it gets better for you soon. You're getting good questions and good advice from the women here. I second oldladyblue's comments.

I am curious about the apricot seeds. What are they for? I am only asking because I only know that stone fruit seeds contain prussic acid (AKA cyanide, very dangerous, used to manufacture poison gas in WW1). Are you taking them for medicinal purposes?

Hugs to you, and I know you will find your way through this.

Cancersux2021

Bitter Raw apricot seeds have B17(amygdalin) They help lower blood pressure, inflammation, help with pain, can kill bad cells in your body- but not fda approved for that. When you eat them and they digest it turns to cyanide and suppose to kill cancer cells. I know for a fact it has lowered my blood pressure my BP with meds was 160/110 no meds just seeds and potassium and calcium and magnesium my BP is 114/78! I brought them in to my family doctor and showed him and he knew exactly why I was eating them for the cancer and he said “you have nothing to lose”. Oh and I have bowel movements every morning no matter what and never feel bloated feel completely emptied out and it’s a soft stool no diarrhea. thank you for your support means so much to me