Has anyone had a preventative DMX years after Lumpectomy?
When I was going through breast cancer in 2021, my breast surgeon, my radiation oncologist, and my oncologist counseled me to get a lumpectomy and radiation. They told me that getting a SMX or DMX for what was thought to be a 5mm tumor (it turned out to be 3mm) was like trying to kill an ant with a sledgehammer. The oncologist went so far as to tell me my cancer was "nothing".
When I had my hour-long meeting with the breast surgeon, she told me the surgery for DMX would be much more involved, therefore longer and "dangerous" due to the time under anesthesia. She also said that I would need 3-4 additional surgeries for reconstruction, and that the recovery was much, much harder with a DMX. She never told me that going straight to implants would be an option. Even though in my heart I wanted a DMX, I felt foolish for taking such a "drastic" measure, especially since she assured me that the survival rates were the same between DMX and lumpectomy with radiation.
What wasn't told to me - by anyone on my team, was that the risk of a NEW cancer (contralateral) was MUCH higher than with a DMX. It stands to reason if there is more breast tissue, there are more places for the cancer to hide. But no one ever went through that with me. Nor did anyone go over my risk factors - very dense breasts, family hx of early ovarian cancer and breast cancer in 2nd relatives, late age of onset (after 50) for my first breast cancer, prior cancer hx (cervical cancer at age 30). I also learned that risk for contralateral cancer increases after age 70, and it's quite high.
I'm not one to worry all the time about cancer coming back, but at my recent breast MRI (which I had to fight for a year to get with my breast surgeon - she only relented when the radiologist told me - and then her - that she could see NOTHING on my mammograms my breasts were so dense, and even an ultrasound was "not much better") - they found a suspicious area in my left (contralateral) breast which had to be biopsied.
The MRI biopsy was one of the most grueling things i have ever been through - not the biopsy itself, that was a piece of cake, but the position I was in. Because the suspicious area was way on the outside edge I was prone but part of my body twisted, and my head sideways, and my left arm twisted. I was in exruciating pain start to finish and at several points thought I wouldn't make it through the hour long procedure. I have cervical stenosis and scoliosis and lots of spinal issues - degenerative disk disease and osteoarthritis, which contributed to the pain. I have had multiple breast MRIs without this kind of pain, but this was on a whole other level. I remember crying and saying to myself, "I can't do this anymore".
That whole event made me start thinking of doing a preventative DMX before another cancer happens. Because if another cancer does happen, next time I might not be so lucky. I didn't need chemo the first time, but I might next time, and I was 64 at the time of my first cancer, now I'm 67, and I know that the treatments will be harder on my body as I age. Even radiation was hard for me (after the fact). I have never recovered to my old feeling of wellbeing.
The other consideration is I have a lot of blood pressure issues and so have to monitor my blood pressure daily. If I get another cancer in the other breast, since at least the sentinel lymph node is taken, and maybe more nodes, I won't be able to use either arm for IVs or BP monitoring.
So…. has anybody else been in this position? Regretted a lumpectomy and had a DMX before something elsee happened? I have appts set up with two breast surgeons to talk through things, and met with my old breast surgeon's PA this week (that breast surgeon is no longer practicing) and she was wonderful. I asked her if doing this was being reactive from the stress of the abnormal MRI and she said "No, your situation is very tricky and you have very "busy" breasts, which are most often seen in pre-menopausal women and have a lot of risk factors (no gene mutations) so it's a valid thing to consider".
I do worry about the surgery, reconstruction and recovery.
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Hello @macdebbie I am sorry for the situation you are in. When I was diagnosed with IDC my surgeon told me I had 2 options - lumpectomy & radiation or mastectomy with or without reconstruction. I was told it would be bring the same outcome as to treating my cancer.
I chose lumpectomy and radiation. I had the surgery late last year. The pathology of my lumpectomy showed more than IDC and my surgeon did say that because of this, my dense and busy breasts and my family history, I have 2 options again - a preventative mastectomy or continue with radiation and after that mammogram and MRI alternately every 6 months and depending on results, biopsy too. When I asked my surgeon how long I need to do this, she said she really can’t say and it depends on the results.
Prior to my diagnosis I had a hard time with my biopsy, I was in a prone position, my neck sideways and etc. The following day I had severe pain on my neck, arm and back that I had to see my PCP and chiropractor for it. Prior to my lumpectomy, a wire was inserted to my breast and it was mammogram guided - much to my surprise I just cried when they were doing the procedure. It must still be the trauma from the biopsy.
I don’t think I can do mammograms, MRIs alternating every 6 months and possible biopsies in between and the waiting game - waiting for the results of my tests. That plus my visits to my oncologist and radiation oncologist if I proceed with radiation. It was just too much for me. I talked with my surgeon again and I have decided to do preventative mastectomy. I just turned 46 y/o when I found out about my cancer diagnosis. When I first saw my breast surgeon keeps mentioning “quality of life” when she spoke of masectomy, I didn’t really understand what she meant by it then but now I do. It’s a very tough decision for me. I still have a lot of worries right now. Sometimes I think I chose wrong but then I also feel like both choices aren’t really good - I mean who wants to have mastectomy or have mammograms and MRIs every 6 months. I just need to do what I need to do.
I really hope you get the support you need from your doctors and you are able to make a decision that works well for you.
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@greatjoy, thank you so much! This is tremendously helpful. I agree - the waiting, the not knowing, the biopsies, the wondering if the mammogram saw everything, which it usually doesn't with dense breasts, the wondering if there's more hiding somewhere - I often hear of women who have a lumpectomy and then for whatever reason have a DMX and they find more cancer then they originally knew about.
May I ask when you had your lumpectomy, you said the pathology indicated "more than IDC". May I ask what else they found?
Also, can you explain what your surgeon meant by Quality of Life? Did she mean there is less worry after you have a DMX?
I wish you well with your surgery - when are you scheduled? I have heard it's not as ominous as we sometimes make it out to be. I for one, if I decide to go this route, think I will feel a huge sense of relief. I wish I could go back and would have done it in the beginning and save myself a lot of damage from radiation, and a lot of worry.
Please let me know after your surgery how you do! I'll be thinking of you. ❤️0 -
I’ve been wondering about the same thing. I’m 6.5 years post lumpectomy and radiation. Alternating mammo and MRI every 6 months since then. Since completing hormone therapy the MRI is picking up more areas of enhancement and I keep having biopsies recommended. Last year’s was benign and I’m waiting to schedule one for my current spot. Surgery and radiation left me with painful scar tissue and frequent episodes of raynauds in that nipple. Now I have to have a biopsy on the other side and am worried about setting off pain for that side. I was 41 at diagnosis so at this rate have many years of scans and biopsies ahead of me and it just doesn’t seem worth it to keep my breasts for this but I don’t know if I could get a doctor to agree to do a DMX at this point unless a biopsy comes back with a second cancer.
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@otmom, I met with a breast surgeon to explore this because I have VERY dense breasts, so my risk of getting a new primary in the contralateral (opposite) breast is 50% higher, and the one MRI-guided biopsy I just had was a nightmare - the biopsy itself was fine, but the positioning was excruciating with my body and head twisted, and the IV fell out so contrast got under my skin and I was panicked I would have to have the test all over again.
The surgeon was not encouraging. My preference is to go straight to implants to minimize surgery time. She said that was "very unlikely" because of having had radiation. Had I known that, I never would have opted for lumpectomy/radiation, I would have had SMX (or DMX) initially. That's what I wanted, but I was talked out of it saying it was "killing an ant with a hammer". Never mind all the serious side effects of radiation to perhaps come - lung cancer, skin cancer, chronic cough, and I just found out I can't take 2 bone building drugs for my osteoporosis because I have had radiation. Ugh…. The gift that keeps on giving. Dr. Susan Love calls it "Collateral Damage" in her book, and now I know what she means.
The surgeon told me that they would likely have to do a flap procedure, which would be additional surgery to my stomach or back if there is not enough fat on my stomach (there isn't) so there's risk there of infection, grafting not taking, cording, etc. She also said she has a lot of women that get cording, and lose a lot of range of motion and have to have a long course of PT to regain some of it - not all - back. She also said that the surgery would be 8-12 hours, and additional surgeries for the reconstruction and "adjustments" down the road as rarely is it perfect the first time. She also said that my risk of lymphedema with a DMX goes way up as she is removing the entire breast lymph system.
I really wanted nipple and skin sparing, which she said I likely wasn't a candidate for, due to the radiation. I am so upset by that, as I could have had that the first time, and gone direct to implants and been done with this whole thing.
All that said, she acknowledged that there is risk of damage to the kidneys from the gadolinium for the MRI annual but also for any biopsies, and there is some question now whether it accumulates in the brain and causes alzheimers. However, I had a very serious talk with a radiologist who told me it was a miracle that they found my cancer via mammogram, and that I NEEDED annual MRIs.
So I feel between a rock and a hard place. Darned if you do, darned if you don't. I wish I had just done what I wanted initially - DMX and I wouldn't be going through all this. She kept saying the "survival" rate is the same and they would likely find any new cancer early, but, I told her that's not the problem. The problem is GETTING to that survival with annual MRIs and likely biopsies, and likely a new cancer that might not be as favorable this time (I didn't have to have chemo) with surgery and chemo when I am even older and maybe not as healthy.
Maybe I'm jaded, but sometimes I think they think of us as "Lifetime Value of a Customer" where if they do a DMX, that's a one and done and they make no more money off you, But if they do a lumpectomy, they get $$$$$$$ for radiation and also sometimes chemo, and you'll likely be a repeat customer when another cancer occurs and they'll get more money for another surgery/surgeries, chemo, and perhaps radiation.
I'm meeting with another breast surgeon tomorrow and will see if her take is any different.1 -
It's disappointing to hear that they were so negative about it. I know it's not something to go into lightly and there are many potential complications, but many people have prophylactic mastectomies, so it's a valid question. I did lose some range of motion just from the lumpectomy and radiation, so that is a consideration, but I'm also hypermobile, so losing range of motion for me generally just means that my range becomes normal.
Certainly if this or any other biopsy comes back positive I will ask about DMX. I'm fairly sure that radiation triggered a significant worsening in my asthma, so I'm cautious doing another round of that. My experience with MRI guided biopsy last winter was pretty brutal, so I'm not looking forward to repeating that in a few weeks. Since I went from menopausal to perimenopausal when I finished hormone therapy, my hormones are all over the place. Odds are good that this is another false positive caused by hormonal activity, but the only way to be sure is another biopsy and I worry that this will just be the pattern until my hormones calm down again. Annual MRI guided biopsies would not be my preference. I wish that I'd known to ask more questions when I was first diagnosed. I don't know that I would have done anything differently, but maybe.
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Hi @macdebbie, I had lumpectomy and radiation in 2022. I’m a brca2 and am always worried about cancer recurrence. I don’t know if I trust that MRI and mammogram every 6 months can detect aggressive bc. So this year I had BMX, exactly 14 days ago. What a relief to finally put one of my constant worries to rest, at least for now. I didn’t get the nerve blocking as I requested so I woke up in pain (I found out after surgery was done). Prescription pain med kept the pain tolerable for the first few days, then Tylenol after that. My sister had nerve blocking and she didn’t feel the pain. She was sailing through it. The drain is the worst part. It bothersome but not painful. It’s a personal decision, no right or wrong.
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Hi @myyoga! Thanks for posting — we're so happy to have you share your experience. It is always so helpful to hear from others what it was like to go through something that can be so daunting like a bilateral mastecomy and come out on the other side with minimal effects and a sense of relief. So, thank you for sharing!
We hope your drains come out soon and that you can start healing. We're thinking of you!
—The Mods
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thank you for your kind words. My drains came out on day 7 and 8. It’s good to be among the people who understand what I’m going through, no judgement just encouragement.
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I am in the same position. In 2015, I was diagnosed with DCIS, grade 3, ER+ on my left side. My breast surgeon said, no problem, just a lumpectomy/radiation/aromatase inhibiter for 5 years - 100% treatable. And to tell you the truth, I knew I was lucky not to need chemo. But my excruciating stereotactic biopsy said "possible micro-invasion" and the protocol in 2015 was that they always take a sentinel node for biopsy with DCIS.
And lucky as I was, the side effects were radiation skin burn which healed, and radiation recall which is massive hives over most of my body which started as a rash and ended in my upper torso being one red raised welp. It did take longer and more pain to heal from the node removal than the lumpectomy. And I had chest lymphedema (from the radiation? from the lymph node removal?) which required 6 months of lymphedema therapy.
Since my node had been removed from my left side and I had chest lymphadema, I followed guidelines from that time, which said, do not take blood pressure readings, blood draws, get injections or IVs in your left arm. I then proceeded to need three joint replacement surgeries over the next 5 years. Since then, some of these procedures are generally thought to be ok, however. some links like the oncolink.org below disagree.
Then I find myself needing to go to a cardiologist who says that 25% of her heart patients have had breast cancer treatment.
In 2024, I was diagnosed with DCIS, grade 3, hormone receptor negative on my right side - the contralateral side. My new breast surgeon is very informative and communicates very well a ton of information. She said the choice was mine to have lumpectomy/radiation again or to have a mastectomy. My path to a diagnosis had taken 6 months and involved multiple mammograms, a failed but still painful stereotactic biopsy and finally an excision biopsy. The excision biopsy was the best, since it involved a full pathology and indicated no microinvasion. This meant that a reasonable surgeon would not complicate my life further with a 'just-in-case' sentinel node removal on my right side. And I have a reasonable breast surgeon. While we were discussing treatment and I said I wanted a double mastectomy due to family history, painful lengthy pre-treatment diagnosis, my breast surgeon did warn me about mastectomy on a 'previously treated breast'. I still chose the double mastectomy.
I had my double mastectomy surgery January 29, 2025 and it is three weeks later. I still have my drain in for the left side - the previously treated breast (prophylactic in this case), but I hope it can come out tomorrow. And I have cording from the 10 year old sentinel node removal. I had never heard of cording even with my previous lymphedema and therapy.
And I am still so lucky, even with my newly concave chest.
https://www.oncolink.org/frequently-asked-questions/cancers/blood-pressures-and-ivs-after-mastectomy
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@d67austin Oh no! You’ve been through so much! It must have been so shocking to get the diagnosis twice.
My surgery was a day after yours, Jan 30, 25. Mine was a simple DMX, prophylactic because of my brca. I was DX with IDC in 2022, lumpectomy and radiation on the left side. That’s the side that continued bleeding after surgery with lots of bruises. My drains, 2 on each side, came out on day 7 and 8. Nobody mentions pain during drain removal, mine was terrible, pain on top of a weird sensation. The radiated side feels like rock! No fever or pus though. One side is flat, the other is still a little bulging as if they didn’t take all the breast tissue out because of so much bleeding?
Please come back and let me know how you’re doing after the drain removal. Why do you have it there so long? We might need physical therapy after this.I’m still having burning sensation especially when getting up from lying position. I guess a good Dr makes a big difference. My sister had it few months ago. She had nerve blocking and only took one pain killer. She sailed through it like nothing happened. So weird! Hugs
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Hello! I finally got the previously treated breast (lumpectomy/radiation) drain out 3 weeks to the day after my double mastectomy. My untreated breast (except for December lumpectomy excision to get pathology) seemed textbook and the drain was removed 8 days after the surgery. The treated breast had drainage that was brighter red much longer and did not fade in color until day 17-18 and did not go below 30ml (24 hour period) until day 20-21. A drain with the tape to hold the suture closed is so uncomfortable. My husband said the drain was about 2 feet long inside. Although it was painful to remove, I feel so much better without it!
My right side that was not radiated and had no lymph node removal looks good to me, not as concave as right after the surgery. My left side that had a node removed 10 years ago has an "L" shape large cording with the short leg of the cord going from underarm down my rib cage and the long leg going from underarm to middle of my chest along the scar line. I think without this strange cording, my left side would look better. But previously radiated skin isn't very pretty right now. I think it will continue to improve especially after the cording goes away which will definitely take some therapy. So that is my next step!
You and your sister did the right thing. My own sister passed away from TNBC 4 years after her diagnosis in 2018. We know now that we have something in the family, but genetic testing did not find BRCA. We are all worried about our daughters.
Thank you for writing and I wish you and your sister very well!
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I’m glad the drain is out. Your drains are similar to my sister’s, very long inside. Mine is short but has flat rectangular shape. It’s painful when the PA took them out. The fluid on the radiated side (3 years ago) was dark red, one drain put out decent liquid, the other was not and the liquid was dark red and stringy. It was and still is badly bruised. I’m worried about that side. It’s rather convex and feel like rock. I’m seeing BS next week to ask about that.
I’m sorry your cording is too extensive. Does it hurt still? Mine was minor and close to where the lymph node was taken out. Are you still in pain or the pain is gone now? I think we need to see physical therapist, at least I plan to.
I’m sorry about your sister. Your daughters should be under surveillance. I’m already 63, so I decided to go flat. For young people, that’s a tough decision.Thank you for writing back. Praying for your fast recovery. Hugs.
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