Lumpectomy or double mastectomy at 27 years old

hray1993 · May 2020

Disclaimer: this is a very long post and kind of all over the place.

I'm having so much trouble making a decision on my surgery. I think what's making it so hard is I'm so young, 26 at diagnosis so I have a long time to worry about this cancer coming back. When I was first diagnosed I decided I was going to do a double mastectomy and didn't even consider anything else because I wanted all this tissue gone so I didn't have to worry about it coming back. Since doing more research I had changed my mind and decided to do lumpectomy because I was told either one was the same odds of it coming back and with lumpectomy the surgery is much easier and recovery is easier and I could move on with my life a lot quicker. But now I'm changing my mind again. My tumor keeps growing. I am on a clinical trial and had injections directly into my tumor, immunotherapy, and just finished 12 weeks of taxol. My tumor started at 3.5x3cm when diagnosed. When I started chemo two months later it was 7x7cm. During chemo it went down to 3x3cm. On week 10 of taxol and also the same week I'd get my injection and immunotherapy my chemo was put on hold for a week because they tested me for covid. The next week when I came back for chemo my tumor had grown to 3.5x4. It stayed about that size for awhile. It's been one week since I finished taxol and 3 weeks since I last got an injection and immunotherapy. I had an mri and biopsy this past Friday and she wouldn't tell me sizes but she said my tumor has grown since my last mri. I'll know the size of it on Wednesday but I knew it had grown because I could feel it and it feels as big as it was when it was 7x7 cm. So I'm expecting it to be around that size. I start AC chemo on Thursday. My thing is I feel like if we're not throwing EVERYTHING at this tumor constantly then it's growing. I'm hoping AC can get it under control but we don't know yet. My fear is that if I do lumpectomy and there happens to be any little bit left after surgery that maybe couldn't be seen then it will grow because then I'll be done with treatment and not throwing anything at it to kill it and I'll be dealing with all this again so soon. Like if the tissue is there it's gonna grow. I know mastectomy can't take all tissue and there will still be some left on chest wall and it could still come back even with mastectomy but I feel like I'd have more peace of mind knowing there wasn't as much tissue for such an aggressive tumor to come back in. My tumor is grade 3. But then if I choose double mastectomy then I have to think about reconstruction. The surgery for double mastectomy is much longer and could have more complications then there are additional surgeries for reconstruction and my body could reject the implants or could have complications from them. And if I go flat, well, will I be confident in myself being flat the rest of my life? I think about issues with clothing fitting right... I don't think I'd want to use knitted knockers all the time. But how am I going to feel in summer when it's bathing suit time and I'm so young so people would definitely stare and I don't know if I'd be comfortable with that. For the record, I am done having kids, I have an 8 year old and an 8 year old step child. So I don't really need my breasts. So then if we go back to lumpectomy... I'd have to do radiation and my tumor is on my left side so right by my heart so I worry about that because my family has tons of heart issues on both sides. And with lumpectomy if the chemo doesn't shrink the tumor then it would be a huge chunk of my breast they would take so it wouldn't look good cosmetically and I'd need to do some sort of reconstruction probably diep surgery to make my breast look normal again but then do I mess with the healthy breast so they match? As you can tell I feel like I'm all over the place and I have a FaceTime meeting with my breast surgeon on Wednesday and feel like I need to be prepared with questions. I'll obviously ask her medical opinion but she's not the one that will have to live with the decision the rest of my life. I feel like mastectomy would give me more peace of mind because I have hopefully 50+ more years to live and that's a long time to worry about cancer coming back and I know I'd worry every day if I choose lumpectomy but lumpectomy would be so much easier and I could move on with life a lot quicker and I'm just so tired already dealing with all this. Mastectomy would mean I would have to deal with it all so much longer. But if I go lumpectomy then it could come back and I could be going through this all over again. Someone please help. I feel like this decision is so much harder making it at 27. I have so much life left to think about. I've read on the boards till I can't think straight and I've read beesies list of questions which sends me mostly to double mastectomy but id like people's opinions on my specific situation. What would you do if you were in my shoes?

farmerlucy · May 2020

Either surgery produces similar good results re: local recurrence. My thought is when in doubt do the least impactful option. You can choose to have them removed later. I have very little feeling in that area, but mine were removed at 51 yr not 27. I’m very sorry you are facing this.

hray1993 · May 2020

thank you. I feel like if I were older I wouldn’t have such a hard time deciding but being 27 I feel like it’s so much harder for me to decide. I’m terrified of having a recurrence.

Krose53 · May 2020

It's a hard decision. Mine was made for me. Cancer was found in both breasts. I just wanted to say that I found the mastectomy and recovery pretty easy . I didn't have much pain and no residual shoulder or arm restrictions or limitations I had tissue expanders placed at the time of surgery. I also didn't find the tissue expanders that uncomfortable. I did go small, so maybe it would have been different if I had to keep expanding. There is a definite loss of sensation and scarring but I can live with that. The replacement surgery went smoothly and much easier than the mastectomy. I am also much older than you. Wishing you smooth sailing no matter what you chose

farmerlucy · May 2020

The other thing I would want to know is how well my breast image. I.E what is the breast density and does the radiologist think they'll be able to see anything up to no good. Mine were extremely dense and most imaging missed it. Personally I never looked back at my decision to do a PBM. The other thing to keep in mind is how well are you aregoing to be able to handle every sixth months of alternating MRIs/ mammos? I did high risk screening for nearly twenty years and I was going broke with the screenings/ biopsies. Have you visited the FORCE website? There are probably more younger women there who've had to make the tough decision. But - Onlyyou can make the decision. Go with what your gut is telling you.

hray1993 · May 2020

thank you. That makes me feel better knowing it’s possible for everything to go smoothly with mastectomy surgery and reconstruction. I tend to think about worst case scenario in everything so I can prepare myself so it makes me feel a lot better knowing it went so smoothly for you. I’m honestly hoping my decision gets made for me but as of right now until I hear otherwise I get to choose my surgery. It’s so stressful

Beesie · May 2020

hray, as I see it, you face 3 risks.

First and most concerning is the risk of mets, i.e. a distant recurrence. You are addressing this risk with chemo . The type of surgery you have - a lumpectomy or a mastectomy - won't have an impact on this risk.

Second is the risk of a localized recurrence, a return of the current cancer in the same location in your breast. This seems to be the concern you are voicing in your post. In all likelihood, given your grade 3 tumor and the fact that the tumor is large, your risk will be higher with a lumpectomy than with a mastectomy.

Third is the risk of a new primary breast cancer. This would be a new cancer, unrelated to your current diagnosis, and could occur in either breast. Because of your very young age and the fact that you have so many years ahead of you, this might actually be the highest risk you face. But this risk is spread over your lifetime - so this may not be something that you want or need to address now.

Given your concerns about the second risk, one option that you haven't mentioned is a single mastectomy. This would reduce as much as possible your local recurrence risk. You could go with implant reconstruction and see how you like it, or go flat and see how you manage that. Either way, it would be easier to recover from than a bilateral mastectomy. Having a BMX vs. a UMX makes absolutely no difference in your risk relative to your current diagnosis. A BMX only comes into play when you consider your future and the risk that you might develop a new primary breast cancer. For this risk, you could decide at a later date if you want to have a prophylactic mastectomy of the contralateral breast. You could go with the same approach (implant or flat) or opt then for a DIEP on both sides.

This might not be the right option for you but I wanted to mention it since you seem to be looking at only a BMX or a lumpectomy and this is a bit of a compromise solution.

FYI, some information about new primary risk: Second Primary Breast Cancer Occurrence According to Hormone Receptor Status https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/

"The risk of a new contralateral primary breast cancer among women who had a breast cancer of any HR status was more than two fold (SIR = 2.46, 95% CI = 2.40 to 2.52) that of the general population."

"For women with a first HR-positive tumor, there was an inverse trend with age at diagnosis, with risk of any second primary cancer highest when cancer was first diagnosed before age 30 years (SIR = 43.8, 95% CI = 27.1 to 66.9, AR = 19 per 10 000 PY), declining statistically significantly for age 30–39 years (SIR = 7.39, 95% CI = 6.37 to 8.53, AR = 13 per 10 000 PY) and dropping to SIRs between 1.0 and 3.0 thereafter. This trend by age was observed irrespective of HR status of the second tumor."

hray1993 · May 2020

Beesie, you are always full of information and I'm so glad you commented on my post. I had considered a single mastectomy but I feel like if I go the mastectomy route I'd rather just do both. So a single doesn't really seem like an option I'd go for. I'd hate to take the tissue out of one breast but leave it in the other for cancer to have a chance to come back in that one. I guess to me it feels like a single Is only halfway taking out the risk. I'm sure that's not the case but that's how I think about it

hray1993 · May 2020

Beesie, I love that you break everything down into steps so it’s easier to think about like my 3 risks. That’s what I’ve been trying to do in my head but couldn’t figure it out. Thank you so much for doing that for me.

Tmh0921 · May 2020

I was diagnosed the first time at 27 years old (20 years ago!), and wouldn’t even consider a mastectomy. I had a lumpectomy, node dissection, radiation, and Tamoxifen. Little did I know, I would never have a normal mammogram and the next 20 years would be a regular pattern of mammogram, biopsy, waiting. The mental strain was definitely detrimental.

Fast forward to 2016, and I had a diagnosis of pre-cancerous ADH, then in 2018 I had pre-cancerous ALH and non-invasive DCIS. And finally, in May of 2019 the other shoe dropped and I was diagnosed with a new primary IDC stage 2A.

If I could go back to my 27 year old self at my original diagnosis, I would have chosen differently and opted for a BMX.

Hugs

Tracy

hray1993 · May 2020

thank you so much for your comment Tracy. Your exact situation is my fear. I already suffer from anxiety before cancer came about and the cancer makes it much worse and I feel like I’d constantly be battling my mind and any little thing I would fear recurrence. Every mammogram and mri and then biopsy if anything was found would be so much mental strain I believe. Your comment is what I’ve needed to hear. Someone in my situation at this young of an age, their decision and if they regret it. I hope you’re doing well since your most recent diagnos

Maryjv · May 2020

hray-34 years old with TNBC. I am a worrier at heart and since diagnosis I have known I was going to have a DMX. My SO agreed given my age and increased risk of reoccurrence as the years go on...I had to have the DIEP reconstruction surgery delayed until a July but the recovery was not bad and I am very happy with my decision! Good luck to you and I just know the AC is gonna kick butt!

hray1993 · May 2020

Mary, I am a worrier at heart too. That’s what’s pushing me towards mastectomy. If you don’t mind me asking what made you decide to do DIEP rather than implants? That’s something I’m considering as well

Tmh0921 · May 2020

hray

I have anxiety as well, and that is why I would have made a different decision during my initial diagnosis knowing how the last 20 years have gone. I want to point out that, for me, the lumpectomy and radiation that I had at my first diagnosis DID work for that diagnosis. My current diagnosis is a NEW primary cancer. But for me, the interim 20 years of abnormal mammograms and constant biopsies were not worth the mental strain and anxiety. I literally would double my anxiety meds (with my doctor's approval) the day of my mammograms to keep the panic attacks away. After my DCIS diagnosis, I had already talked to the insurance company about getting a BMX with reconstruction, and I was lining up appointments with my surgeon when my latest mammogram found my new tumor. I didn't bat an eyelash at asking for a BMX this time - there was no room for discussion as far as I was concerned.

I will say this, treatment of BC, and surgery/reconstruction options have come a LONG way over the last 20 years. Living a long life after a BC diagnosis IS possible, I'm proof. Even with this new diagnosis, my oncologist says we're aiming for another 40-50 years

Tracy

hray1993 · May 2020

Tracy, I hadn’t even thought about The possibility of having abnormal mammograms and mris and coming back with benign results and all the anxiety that would cause. I literally felt like I was going to die of an anxiety attack waiting for this diagnosis so I could only imagine how that would feel going through it every year for 20 years then to end up getting a new primary... that's a huge fear of mine as well. For this reason alone I feel like the mastectomy would be worth it. I'm glad your doctor is saying you could have 40 to 50 years left. I looked up the longest someone has lived without a breast cancer recurrence and it was 57 years but other than that people seem to be shocked if you make it to 20+ years so it's scared me so much knowing that I'll probably have to deal with this all again at some point in my life. I think the mastectomy would give me more peace of mind and make me feel like I've done everything I could to keep cancer away. I feel like if I choose lumpectomy and end up having a recurrence that I'll be kicking myself thinking I could have prevented it if I just would have chose mastectomy so I'm pretty sure I'm going to go mastectomy. I just hate all the extra surgeries and reconstruction decisions that come along with that but I guess it will all be worth it in the end for the peace of mind

jcp · May 2020

hray1993, I had a lumpectomy w chemo and radiation in 2005 at the age of 42. Luckily, I haven't had too many scares these years but once I had to go off hormone blocker ,(after 20 years) I really had wished i had taken both off in the beginning. I considered still doing it last year but have not as of yet. Right now I have to have CT of chest due to an area of calcification on chest xray from my asthma dr. It is scheduled for this Thursday. I hope and pray it's okay. Sorry you are going through all of this and at such a young age.i will keep you in my prayers. JCP

hray1993 · May 2020

thank you so much!! I’ll keep you in my prayers as well! I hope your scan comes back all good!

Maryjv · May 2020

Hray-to be honest have not researched implants at all I just know I would not feel safe with something artificial inside when I can use my own extra tissue and the PS told me the implants often require more surgeries and possibly replacement years down the line...if I didn’t have enough fat to make the boobs I would be fine staying flat! I don’t feel any less beautiful and I just use a padded sports bra if I want to pretend I have some boobs! But we all have our reasons and I’m sure implants are perfectly safe but once again I am a worrier 🤣

hray1993 · May 2020

I’m a worrier too. The implants have scared me. That’s the biggest thing deterring me from doing the mastectomy so I’m going to look more into DIEP. Do you know of any websites I could go to to see before and afters of DIE

hray1993 · May 2020

One thing I just thought about with DIEP surgery.. since it takes tissue from your abdomen and puts it back in your chest, wouldn’t that basically be the same as not having the mastectomy in the first place since it would be tissue that cancer can come back into? Or am I thinking into it too much?

Maryjv · May 2020

I think because it’s no breast tissue it does not pose the same risk. In terms of websites...here in San Antonio the PS I am using has a pretty good website and YouTube videos regarding reconstruction options..it is PRMA plastic surgery.

e32 · May 2020

This is such a hard decision! I worried too. I didn't know what to do. They said I could always go back in later if we found more after we did a lumpectomy. I had no cancer in one side. My initial imaging showed one tumor, but after MRI I showed two "satellite" lesions.

I am not as young as you, a decade older. But I still feel young. I still liked my breasts. Loved them, wanted them, miss them.

BUT.

Something in me nagged and said do mastectomy. And I felt like surgeons were leading me that way but it was still my choice.

I decided on mastectomy, and decided to do both. I was torn on "throwing away" the healthy breast. But once I made my mind up I went for it.

Final pathology came back and they found even more cancer on the tumor side, while the healthy side had abnormal cell changes throughout, which makes us think we would be going down that same path eventually on that side.

All that to say (and hopefully not to scare you), I am 100% happy with my decision. When I see my family, I know I made the right one. At the time I felt like I was trying to navigate a dimly lit maze and it was one of the hardest decisions I have ever made. I do not regret it at all.

Happy to be here, happy to have cancer in the trash.

You're in my thoughts tonight, sending prayers for wisdom and peaceful vibes your way. I remember that feeling and my heart goes out to you!!

hray1993 · May 2020

Mary, that makes sense about the tissue! I’ll have to look up that website. Thank you for the suggestion!

E99, I feel like there’s something nagging me too to go mastectomy so maybe I should listen to it. I’m so glad you listened to what you were feeling and dodged the bullet of having to deal with cancer again!

VioletKali · May 2020

Hello

I chose a double MX at age 32 because I refused to have radiation therapy, and that was regardless of node status. I knew that a bilateral MX offered me the best odds for the risks I was willing to take. I am a Nurse, and it was a very personal choice based on my experiences and quality of life. If I had a lumpectomy , the typical radiation treatment would have affected the cosmetic outcome as well, which was very important for *me*. I always state that because we are all so different in what matters to us.

My tumor was 1.7cm, but it was on my L side and my heart is on the left side. As a Nurse I have cared for patients in heart failure with scarring on their heart. My thought was "IF I beat cancer, having conegative heart failure, heart and lung scarring, were unacceptable to *me*.

I also ended up quitting chemotherapy AND declining hormonal therapy after they both disrupted my quality of life. So I am very thankful I made the choice for a double MX because of my personal factors.

I am now nearly 38 and have no regrets. . I truly believe I made the best choice to remove my breads and have reconstruction

I also asked the doctor to allow me to keep my nipples, he had experience with nipple sparing mastectomy. There is a risk of nipple recurrence, but I wanted my nipples.

I am very pleased with the cosmetic outcome.

ARmom4 · May 2020

Hi hray. I'm 35 and was diagnosed in Jan. I knew right away that I wanted a BMX. I wanted my risk of recurrence to be as low as possible. I'm young so the lifetime risk is high. I didn't want radiation and didn't want repeated mammos. Something to think about: with lumpectomy, if they don't get clear margins you'll have another surgery. The BMX was not as bad as I was expecting. I actually felt powerful after because I felt like I conquered that and handled it well. I didn't have immediate reconstruction. This I regret. After being flat for a few months now, I'm considering reconstruction. It bothers me more than I thought. There aren't any good DIEP surgeons in Arkansas so I'll go with implants. My advice, do immediate reconstuction.

hray1993 · May 2020

Violet, my tumor is on the left side as well and that’s a big worry for me with my heart being there. I already have tons of heart issues that run in my family so damaging my heart with radiation scares me.

ARmom, I read that if they don’t get clear margins with lumpectomy you have to have additional surgery and that’s a worry of mine being as right now my tumor is quite large especially compared to my breast size. I think I’d be worried about them getting clear margins. I’m glad your mastectomy was not as bad as you were thinking. I think that’s what scares me so much is how recovery from the mastectomy will be.

hray1993 · May 2020

I just Talked to my doctor about my scans I just got. He said my tumor has grown. The previous mri was 2.9cm and the mri Friday it was 5cm. He said it seems to have built up a resistance to the chemo but we are started AC chemo on Thursday and he's pretty sure that will knock it down but that we will be on high alert and if it seems to get any bigger during AC then we will stop and go straight to surgery.

Lucy55 · May 2020

Sorry you all had to face this at such young ages !

I was 55 and had always suffered from anxiety ..so when I was my biopsy came back showing ( only ) DCIS I still chose to have a single mastectomy .I ended up being upgraded to IDC after surgery , and the 7mm tumour was in another spot that hadn't shown up on mammogram or ultrasound ..so I was so pleased that I had chosen it ..Then last September, 5 years later , I went back and had the other breast removed as well , after having another biopsy which turned out being benign..I couldn't handle the stress of it again ! So now I'm flat ...and I'm actually quite happy being so...I wear a padded sports bra with knitted knockers mostly ( even though I do have proper prothesis )..and change my breast size to suit the clothes I'm wearing :-) I may of felt differently about going flat if I'd been your age though ...

Hugs

JoniB · May 2020

I was much older than you when diagnosed but if I were to do it again, regardless of how old I was, I would do BMX and DIEP reconstruction. Implants need to be replaced and you are only 27. Imagine how many times you would need to have them replaced. I've heard that in the hands of an experienced plastic surgeon, DIEP reconstruction has great cosmetic results and it is your own body tissue.

I'm so sorry for what you are going through and I hope your new treatment (AC) will be very successful. Sending positive thoughts and hugs your way.

Camama2 · May 2020

hray,

Fifteen years ago I was diagnosed with triple negative BC in my right breast at age 49. I was told same success rate with lumpectomy, chemo & radiation as with mastectomy so I chose lumpectomy. My mother was 68 at her diagnosis and had single mastectomy (genetic testing turned out negative, mom was post-menopausal, I was pre-). Over the years in talking with my mom I said how I couldn't imagine a day would come that I wouldn't think about cancer. She said she was reminded of it everyday (she chose no reconstruction). Last month, two weeks before my 64th birthday, I found a lump in the scar tissue of my lumpectomy. I have triple negative breast cancer again (15 years later) and in the same breast, luckily my scans were clear, no mets. I had a double mastectomy last week. I'm hoping to have reconstruction but the plastic surgeon said that I'm considered "high risk" for reconstruction because the previous lumpectomy and radiation can damage the skin and the blood flow. I'm hoping to have reconstruction but will not know until two months after I finish chemo and the plastic surgeon sees how well I have healed. I will be starting chemo in 3-4 weeks...again. I must tell you I have tried not to think about the "what if" I had a double mastectomy 15 years ago. I can't change the past. But this time it was easy to decide that I was having a double mastectomy (my choice). I can't handle going through this a third time (when I told my husband of my decision he cried and said neither could he). I did ask the current oncologist, the surgeon and the plastic surgeon if reconstruction would make it harder to detect any future cancers. (My surgeon's wife had breast cancer 9 years ago and has had recurrences and lots of problems.) They all said that surgery would take out most of the breast tissue but can never get it all but that the likelihood of another breast cancer was very very slim. After reconstruction they have to test for a recurrence or new BC based on the feel around the reconstruction and any symptoms of mets. I'm choosing to go with reconstruction (at least I hope I can). Just an hour ago I had my drains removed and looked at myself for the first time. I'm sad but happy with my decision. You need to make the decision that is right for YOU. You are doing the right thing in researching and getting opinions but it comes down to your choice. I will tell you that if you were my daughter (my daughter is 24) I would say have the double mastectomy. The younger you are the longer you have to second guess every headache, back ache, etc., and to stress over every mammogram. Once you make the decision trust in yourself and don't second guess what you decide. It is your life and you need to do what is right for YOU. Wishing you the very best and so sorry that you're going through this.

Laurie

Lumpectomy or double mastectomy at 27 years old

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