Diagnosed, thinking about lumpectomy

geneseo

I was diagnosed (after 2 months of mammograms, ultrasounds and finally a biopsy) on Halloween with invasive ductal carcinoma. It's small, grade 2, seems like there is no lymph node involvement. It seems to be a very early, treatable thing - no big deal.

I saw an oncologist yesterday who really had no information for me, and my full pathology was not back yet (it came back later in the afternoon)

Then a visit with the surgeon today - she was awesome. She had my full pathology, and indeed, I have regular old, garden variety, easily treatable, very early stage breast cancer. However, she was very concerned with my health history - already having ovarian cancer (10 years ago), having pre-cancerous colon polyps removed since I was 27, mother died of breast cancer, dad had bladder cancer and non-hodgkin's lymphoma, and grandmother with colon cancer. She did a genetic test. Depending on how my genes come back we will decide on the best treatment.

If the genes come back negative, I can have a simple lumpectomy with a 5 day radiation, a daily pill for 5-10 years, and no chemo. I also can do a mastectomy if I choose, I would skip the radiation (unless lymph nodes are involved, but they don't think they are)

If the genes come back positive, I can also choose a double mastectomy. I'm not sure if chemo will be required or not.

She said the oncologist would probably recommend chemo regardless of what plan we do - but said it really wasn't necessary if the lymph nodes were not involved and I did the radiation.

So - just waiting on that genetic test - which comes back in 7-10 days. Ugh. I hate waiting.

Did anyone with early cancer, without nodes, ever regret just having the lumpectomy and no chemo? I'm pretty sure the statistics show that a lumpectomy has just as good an outcome as a mastectomy. Provided the genetic testing comes back negative, I'm leaning towards that. If it's positive, I think I would go for a double mastectomy and just be done with it.

What I don't want is to have to go through this all over again.

Spoonie77

If I could do mine all over again, knowing what I know now and how anxious I am about recurrence (given I can't be on any endocrine therapy due to allergy) and facing a risk of 28-35% recurrence w/o therapy,I wish I could go back and do a BMX.

I was negative for genetics even though my Mother had BC, my Aunt, and my Cousin. My Father had Prostate cancer and my Sister Ovarian cancer. Yet still, the drs suggested a LMPX was all I needed and despite the clean bill of health, genetic testing wise I still I was recently dxd with Thyroid Cancer. I'm hoping it's not BC Mets.

Next time I see my MO this is on my list of questions for her and if I choose could I go back and have it done as a preventative since again the no available therapy for me.

Anyway, sorry to ramble but just remember that everyone's journey is different and that whatever decision you make, if you are at peace with it that's a very important factor. I was at peace with my LMPX in 2018 and couldn't fathom the idea of being a single lady with multiple chronic illnesses finding a partner in the future after a BMX. At that time, I had tons of treatment options and it seemed "easy peasy". A year later, it's a very different picture, not so "easy peasy" after all and I just want to be alive to date in 5 years if I choose.

Here's hoping your genetics are negative, no LN involvelment, and staying distracted while you wait. For me the waiting was the hardest part. Hang in there. You are not alone.

bluepearl

Given your family history of cancer, I would do the BMX. I have a very weak history of it in my family (two cousins) and got breast cancer twice. Interestingly, I wanted to do a double MX first time around but they said stats were good that I'd be ok...two years later, another tumour. Just my thoughts anyways.

geneseo

My gut reaction to even having breast cancer was to get them both removed and be done with them. They are of no use to me, I've always hated my breasts, and now they seem to just be cancer factories.

But it seems I have a very mild cancer - they all talk about it like it's no big deal - like having the flu. And I don't want to make it a bigger deal than it is, but I also don't want to end up in the same place in a few years.

I think having my mom die of breast cancer makes me afraid - she died within 5 years, and hers seemed to be very basic as well - though I don't know any details other than it was cancer and they did a mastectomy and she took tamoxifen for 1 year - and then almost 5 years later it came back and it was everywhere... bones, brain...

mom2bunky

Well I'll argue the other side for you. I don't regret going the lumpectomy route. It sounds like our situations are similar only I don't have your previous cancer issues. My mother died of a highly aggressive cancer that doctors "think" may have started in the breast, but nobody knows for sure. Anyway my genetic test was negative so we went with the lumpectomy and radiation which my surgeon, plastic surgeon, radiation oncologist, and medical oncologist all agreed is just as effective as BMX and in some cases more effective in recent studies. However, I can and do take tamoxifen.

As to whether or not you need chemo, if you are ER/PR positive and HeR negative they should recommend an oncotype test for you to determine the need for chemo or not. This happens after lumpectomy.

I suppose every once in a great while I wonder if I should have just gotten rid of them. But it doesn't last long. it would have been extremely traumatic for me on top of the diagnosis and I like having options. I was lucky to have them. If I get it again, I don't think I'll blame the lumpectomy as everything I've been told and read says that it can come back even after a BMX because it is impossible to eliminate all the breast tissue.

More things for you to think about. Lumpectomy is a very viable option.

Good luck dear. And big hugs.

AliceBastable

My Mom had breast cancer, my Dad had kidney cancer, my maternal grandmother died of uterine cancer, a fraternal aunt died of breast cancer. I've had endometrial/uterine cancer, low-grade but large skin cancer, and large kidney cancer was found during my tests for breast cancer. I still went with a lumpectomy. I didn't have genetic testing until some months later, and no connections were found. I think BECAUSE of my other cancers, I'm less inclined to lop off body parts unless absolutely necessary.

letsgogolf

Are you having the Oncotype test? That would tell you whether or not chemo would be beneficial. Pretty standard for all patients who are ER+, Her2- to have this done so that you have more information about how to proceed.

geneseo

Yes, my doctor did mention the Oncotype test - and I guess we go from there on the chemo decision.

ruthbru

I am thrilled that I had the option for a lumpectomy!!!

mitziandbubba

I was so grateful that I could have the lumpectomy. I was more scared of having my breasts removed than I was of anything. I know that is an unpopular opinion, but that is just how I feel. Maybe I am not brave. It was an easy choice for me. I take tamoxifen and did radiation. I have virtually no side effects except that I was troubled with some adult acne and my skin looks amazing now! Silver lining, right?

People always say oh, you should have just gotten rid of them but not everyone understands what major surgery that is, and how many surgeries you have if you choose recon which I would have. For one thing, my cancer was in the axilla and they don't even remove that tissue normally with MX. I am normally very physically active and the way the MX would affect my body was worrisome for me. If it was not absolutely necessary, I didn't want it.

I had genetic testing and it was all negative. And I had decided that even if it were positive, I would choose close monitoring vs BMX.

I am so happy with my lumpectomies - I actually had one on the right side too for a non cancerous mass that they just wanted out b/c it would caused issues in future screening - it was what brought me to the doctor actually. My surgeon did such a great job and I look basically the same. It makes a difficult situation easier for me, to look and feel almost the way I did before.

Had that not been an option, of course I would have dealt with it and been ok. But I am happy I had the option.

geneseo

Thank you all for your perspectives, gives me something to think about.

I look forward to when I have some definitive information that will make decisions easier!

Mouse57

I just had a lumpectomy with sentinel lymph node biopsy and though ultrasound and mri sowed nothing in the lymph nodes there did turn out to be microscopic cancer there. Which (I think) means I’ll get radiation not just in the breast but also in the lymph nodes. I say “I think” because I haven’t yet had the full discussion since we are waiting on the Oncotype. My medical oncologist said the Oncotype was to look for “a wolf in sheep’s clothing” so that even if other indicators are good the more detailed test would say whether chemo is indicated

Since there were microscopic cancers (less than 2 mm) in the sentinel lymph node that didn’t show up on mri or ultrasound I think I might not have avoided radiation with the mastectomy and am happy to be recovering quickly from the less involved surgery ( Also I have no family history and am over 60 so the didn’t bother with the genetic tests

Mouse57

this is the diagram my medical oncologist drew for me at our first visit. At the time the biopsy said Er/Pr positive but it had been sent out for the FISH test for HER2 because the first test was inconclusive. It came back negative and the surgery put us on the branch toward the Oncotype test. She was very good at explaining everything

This diagram assumes lumpectomy which I had already discussed the breast surgeon

geneseo

Oh, that flow chart is helpful - thank you!

Mymomsgirl

Geneseo I was in a similar situation family wise, mom had BC and died from it 7 years later, an aunt with BC, a cousin with BC and various other cancers in the family. When I was diagnosed my brain went everywhere and I decided to do the genetic testing. I had 9 high risk genes checked and if anything came back I was going with the double mastectomy, fortunately they were negative so I went for the lumpectomy with reconstruction. In addition to the 9 I also had 38 mid risk genes checked and they were fine. I did have 2 minor mutations that ironically gives me a slightly higher risk of colon cancer so now I need an appointment to get that checked.

Good luck and big hugs and remember everyone is different and you need to do what is right for you.

Rrobin0200

no regrets here with a BMX!!

Yogatyme

geneseo, I had a small (7mm) tumor and was told that the standard care would have been lumpectomy, radiation & chemo, however, I am BRCA1+, which puts the recurrence risk at 85% for both breasts. Therefore, I decided to have BMX. I had no radiation and Oncotype indicated no benefit from chemo. I have no regrets about the BMX, but the fear of recurrence did not completely go away. When using online risk calculators, my recurrence risk is very low, but I think once you have any type of cancer, the fear remains. Every little bump, pain, etc has me immediately going to this fear. I am relatively new to this club and hope this dissipates with time but I have my doubts. Good luck with your decision!

ruthbru

It takes a long time, but eventually you DO get to a point where you don't think every bump or lump is cancer.

Yogatyme

ruthbru,

Thanks for the reassurance! It’s comforting to know it does get better!!

ruthbru

swg

Sounds like you have a good, very thorough surgeon. Here's one thing I am very grateful my surgeon mentioned to me that I did not see you mention in your post--a BREAST MRI.

Like you, I had a small, very treatable stage 1, grade 2 tumor. My first surgeon wanted to do a lumpectomy, radiation, and be done with it.

However, a friend who'd had bc referred me to someone she said was better.

I have dense breast tissue. My NEW surgeon felt we needed to make sure there was nothing else going on, so she got my insurance to pay for the MRI.

Guess what? MRI and subsequent biopsies confirmed I had TWO tumors. No more lumpectomy for me. Because my genetic testing came back neg, and I had personal reasons NOT to have a double mastectomy, I went w a unilateral. I was lucky to have a very good plastic surgeon who did the best I think possible job of reconstructing my cancer breast.

If you have dense breast tissue, I would for sure pressure your surgeon into getting an MRI approved. MRI def catches things mammograms/ultrasounds do not.

swg

Isn't that a strange thing..same here..I had SO many relatives who've had cancer..even an older sister who had DCIS, yet my genetic test turned out negative.

Apparently, right after I was diagnosed, they found even MORE genes related to bc, that they hadn't yet developed tests for. I suspect they will find even more, and hopefully eventually, genetic tests will cover the entire range of possible genetic links.

geneseo

I got my genetic testing back, and all was negative.

Yet, my gut reaction is that I still want a mastectomy - preferably a double one. I know it's irrational.

I recently had a friend die from breast cancer - and of course my mom... and then I was reading the story of another friend - she could have had a lumpectomy, but they did a double mastectomy (not sure why), and found undetected cancer in the other breast.

I know my doctor will do a single mastectomy, but will I get push back or denied insurance coverage for a double? Or am I just crazy?

Askmissa

I didn't want radiation due to risks and changes to my skin, and didn't have time to go get radiation 5 days a week for 6 weeks.

geneseo - not crazy, not irrational. do the double if you want to. You should not get push back. This way your breasts will be symmetrical which was a big deal to me.

sandy1975

Geneseo

I do not think you are being irrational by wanting a mastectomy. I was in a similar situation, mother had breast cancer twice, both times HER 2 positive so she had chemo and herceptin. When I was diagnosed at age 41, I was sure from the beginning I wanted bilateral mastectomy. My genetic testing was negative and my cancer was hormone positive HER2 negative. I had no problems as far as insurance. My surgeon went over the options but I knew a lumpectomy was not what I wanted. It has been more than 2 years and I don’t regret my decision. Do what you think is going to be best for you. Best of luck to you.

geneseo

Sandy1975 - thank you. It seems like we have very similar diagnoses. It's good to hear from others that made the same decision I'm making. I sorta feel like I'm amputating my finger to remove a splinter... I don't want to make it a bigger deal than it is, but I also want to be able to sleep at night - and not be doing surgery all over again a couple of years down the road.

Georgia1

Geneseo, with stats similar to yours I chose a lumpectomy but it is a very personal choice. I'd had a malignant melanoma in my 20s. That said, if you're in the US and prefer a double masectomy your insurance has to pay for it if your doctor concurs.

Good luck making the decision; we're here for you.

Bejeweled

Geneseo,

I just wanted to say that I don't think it's irrational in the least bit. I really struggled with my surgical decision. I was diagnosed at the end of August, but it took me until the beginning of October to make a decision, and then was 10/28 by the time my surgery was performed. I just spun around with the options for quite some time and didn't know what to do. Initially I was really thinking that I would do a mastectomy (bilateral - it didn't even cross my mind to do just one side, if I was going to do it), but I ended up ultimately decided on a lumpectomy with oncoplastic reconstruction on both sides.

Whatever you decide on, it really is a personal decision. My breast surgeon was very clear that she supported both routes and felt that any option was appropriate, and that she was happy to do either one. She gave me some pros and cons for both and we talked extensively about all options.

I just wanted to let you know I am thinking about you as you make this tough decision. Ultimately, if your gut leads you to mastectomy, you should pursue that. It's not "too much" - it's a completely appropriate surgical decision.

Best of luck as you move through this phase. :-)