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Invasive ductal carcinoma with lobular features
Sherri23
13 Posts
Hi,

My 67 year old mom was recently diagnosed with breast cancer. There were two tumors found. One which is purely invasive ductal carcinoma and the second, invasive ductal carcinoma with lobular features.

We met with a surgeon last week who recommended that my mom undergo a partial mastectomy followed by radiation. She also tested positive for both hormone receptors so qualifies for hormonal therapy thereafter as well. However, the surgeon did advise that there is a possibility that he may have to conduct a subsequent partial mastectomy again because there may be other smaller tumors that are too small to detect on the mammogram.

Has anyone dealt with this situation before of having a tumor with both ductal and lobular features?
12 Replies
DMT
161 Posts

@Sherri23 Did the surgeon give a reason why he was recommending possibly two surgeries rather than a mastectomy? Given what was said to her about the possibility of more tumours I would be wanting a mastectomy. JMHO.

ashcon
2093 Posts

@Sherri23

I'm glad you're getting lots of responses to your posts. So great you are reaching out here. I'm very sorry to hear about your folks. Cancer is a long haul kinda thing, and you have 2 parents going through this!

@DMT has a good point about a mastectomy for your mom. I am not a doctor but I believe that until the actual surgery is done and they have the pathology report from that surgery, they don't know with 100% certainty what the story is. If it is lobular (or lobular features), then that is what is called the “sneaky” breast cancer because it forms more like a chain, versus a lump. Getting clear margins is tricky, from what I've heard with just a lumpectomy with invasive lobular.

A good friend of mine has gone through 2 lumpectomies already, just finished chemo, and is having a double mastectomy in 2 weeks. They just couldn't get clear margins, despite there being no cancer in any lymph nodes.(Some docs think a woman's priority is to preserve her precious breasts above all else!)

And it is so draining recovering from even one surgery. How is your mom's overall health? Could she handle multiple surgeries? And with covid the way it is, does your mom want to be exposed to a surgical procedure in a hospital environment twice? Will she be facing chemo too, which will make her further immunocompromised?

Every case of cancer is different, even when a diagnosis is identical. What are your parents thinking? Asking? Feeling? Can you take a cue from both of them as to what's important to them right now?

supersu
727 Posts

@Sherri23

good morning daughter!
how lovely that your mom has you – this is a great place for patients and their caregivers to ask questions; get information and support too!

my experience:
I'm a bit younger than your mom, (58), but my cancer had both features like hers.


I had 2X lumpectomies to get clear margins. I suppose that had I not had clear margins the 2nd time around a mastectomy would have been in the works??? I dunno, honestly I was doing this all at the very beginning of COVID and everyone was being super careful – limiting interactions as much as possible. I was just happy I got any treatment at all….ha ha ha

I then completed 16 zaps of radiation, and now take a pill daily to prevent recurrence.

I have been advised tho, because of the lobular features, to surveil my breast(s) very thouroughly. annual mammo/US and MRI to ensure nothing is missed.

maybe, had things been different I would have been offered a mastectomy?? sometimes I wish I had been given that option.
it seems like even with ‘exactly the same diagnosis’ treatments vary.

I am now almost 2 years out from my initial diagnosis and am doing well; living my life as much as I can in a pandemic, working full time in healthcare, and trying to stay COVID free.

let us know how you folks are making out. I am happy to share my story any time.

cheers
su

#breastcancer #invasiveductalcarcinoma #lobularfeatures #mastectomy #densebreasts

Skye2
66 Posts

Hi @Sherri23

i am so very sorry for you and your family and these painful diagnoses. That’s a heavy burden to bear on your shoulders with your own family to look after. Yes, you are in the sandwich generation for sure.

I would speak with both your parents care teams and take advantage of any support resources they can offer. Social work can help too, and counseling too.

I lost my Dad to kidney cancer at the age of 25. I was a new nurse, ironically, working on a urology ward. They actually had to move him to a different ward so that we weren’t together. He came home, and the bulk of looking after him fell to me, until the end When we had nurses come in. The emotional toll is exhausting, heartbreaking, and mentally draining as you feel love, guilt, anger, sadness, and so many other emotions and thoughts. These are all normal. Now, 35 years later, I’m grateful I had the time with my Dad. My Mom had COPD, and died of it 9 years after my Dad.

Now, here I am 35 years later, and had kidney cancer too in 2020, and now breast cancer. I also had IDC as well as DCIS in both breasts, already spread to lymph nodes. I had a double mastectomy with removal lymph nodes, chemo, more lymph node surgery, and am now in radiation. I too, am ER, PR+, and HER2-, and will go on anti hormone medication when I finish radiation.

I must say, I do find it curious that your Mom’s surgeon wants to do 2 separate lumpectomies as opposed to a (double) mastectomy?!? Is it in both breasts or just one?

I would investigate that option with both your Mom and her surgeon. But, most importantly, I want you to know as a daughter caregiver, we will be here to support you, listen to you and answer any questions.

..you can ask me anything, I’m happy to help.

Sue

Sherri23
13 Posts

@DMT @ashcon @Skye2

Thank you very much for your replies and for sharing. We had done some research on this before meeting the surgeon had discussed a total mastectomy, my mom wanted a double mastectomy, even though her two tumors are in one breast and are small (1cm and 0.7 mm). But unfortunately when we met with the surgeon he did not think my mom was a good candidate for even a single total masectomy given her extensive health issues. In hindsight I don’t know what we were thinking- it would be an intense recovery for her and we know she is not fit for surgery. My mom agrees and seems more relieved with the partial mastectomy plus radiation option. The surgeon did say that the chance of having to go in again would be a small 10-15 percent chance but nonetheless the possibility is still there and I appreciate that until the final pathology report is back we won’t know. Very nerve wracking! He also feels that she can survive two smaller surgeries rather than one big one (plus multiple big ones if she wanted breast reconstruction which she definitely would).

With that said, I spoke with a friend who is an oncologist and sent her my moms pathology reports. And she also recommended partial mastectomy plus radiation for my mom without hearing the surgeons recommendation.

@ashcon I am very sorry to read about your friends ordeal. That sounds so difficult for one to endure.

Sherri23
13 Posts

@supersu Thank you for your response. I am so happy to hear you are doing well! It sounds like your treatment plan is similar to what is being proposed to my mom. I mentioned in an earlier post that I spoke to a friend who is an oncologist about my mom‘s situation- and she told me that in the past 10 years the standard for recommending total mastectomies has changed and that if a partial mastectomy is a viable option for a surgeon (depending on size, location, number of tumors etc) research suggests that a partial mastectomy plus radiation is considered the equivalent to having a total single mastectomy. Now I have not read the research myself but given that a total mastectomy is not an option for my mom- I’ll put my faith in what she advised.

If you don’t mind sharing, what was the recovery like for your first partial mastectomy? How long? No pressure at all to answer. I am already grateful for you responding in the first place.

Sherri23
13 Posts

@Skye2 your message brought tears to my eyes. You have had quite the journey in life and yet here you are offering advice to me. I feel a thank you is not enough..

It is tough seeing your parents like this. You were so young when during your dad‘s cancer journey. I am 40 and still don’t feel ready for this but I guess nobody can ever be ready, right? And I feel every single one of those emotions you listed- life definitely feels like a roller coaster. Thank you again for reaching out and for offering guidance. Sending you many virtual hugs. xo

Skye2
66 Posts

Omg! @Sherri23 you are so welcome! You are never ready to lose a parent - it doesn’t matter how old they are!

Its really important to have a good relationship with the medical team, and to have trust in your doctors. I’m confident your mom’s surgeon has her best interests at heart. My tumours were also 1cm only, but had spread. And I have to emphasize that the double mastectomy was MY choice as opposed to lumpectomies, based on my research and in consultation with my surgeon.

I did opt for immediate reconstruction, and tissue expanders were inserted at the time of the mastectomy. I had worked as an OR nurse long enough to know I didn’t want a TRAM or DIEP flap. I will have my implants done 6 months after radiation.

My “Double mastectomy, sentinel node biopsies, axillary dissection and insertion of tissue expanders“, was a day surgery, and I went home around 3 pm - I was the 8 am patient…. but, it is a big surgery, and I had a drain on each side to look after. I was fortunate to have a nerve block for pain control done before I went in to the OR, but I suffered terrible nerve pain during my recovery until I was started on Lyrica. I’d say the recovery was 6-8 weeks and much more invasive than a lumpectomy would be!

Every woman’s journey is different…and certainly if your Mom has extenuating health issues, that’s a consideration.

All this to say, I’m sure her surgeon (and your Mom) know what they’re doing!!!

you are an amazing daughter, and this will bring all of you closer together.

I will keep my fingers crossed for you, please keep us updated if you want to share, and come back anytime!

Sue

supersu
727 Posts

@Sherri23

I don't mind one little bit sharing any/all experiences I've had. (if you haven't realized yet, I love to go on and on and on - ha ha ha).

my first partial mastectomy, (or lumpectomy as they call it here), was really quite uneventful. as I said earlier, I was treated during COVID, and this first surgery was on the very same day it was announced in this province.

I was in and out of the hospital in record time…o think they just wanted to get everyone out ASAP... I had a friend pick me up, (sans mask I think if I recall correctly), and we hit up McDonalds on the way home. I was STARVING but felt A-OK.
I expected to be recovering for a few days….but spent the afternoon puttering around the house, and honestly if I could have, would have gone to work the next day. I felt fantastic.

the dressing that the surgeon applied stayed on for about a week. I needed to keep it dry, but could shower with my back toward the faucet. when I did take it off I was pleasantly surprised at just how neat and tidy everything was. I had 2 incisions, one in the armpit and one on the underside of my breast. I guess I was lucky where it was located as far as aesthetics.

some minor pain & numbness that took care of itself with time. I did start a seniors yoga class daily to promote movement and I think that saved my bacon as far as stiffness and range of motion issues.

I never did take any pain control or feel unwell.

I understand that other folks have much different experiences. I was lucky.

I have longstanding rheumatoid arthritis, am overweight and have asthma, so am not the healthiest kid in the class, but considering everything I did pretty well.
I have had very few surgeries in my lifetime; I've been told that the more surgeries you have the harder it is to bounce back?? not sure if that is true or not.

you mention that your mom is not a great surgical candidate. I hope she can cope with the partial mastectomy surgery, get clear margins the first time, and take all it in stride.

wishing her, (and you), all the best
su

#surgery #breastcancer #clearmargins

Sherri23
13 Posts

@supersu I find your responses very informative and informative. Thank you for sharing your experience. I am so happy to hear that your initial lumpectomy and recovery was uneventful. I do hope the subsequent lumpectomy was just as uneventful for you.

My mom has had several surgeries in her day and the surgeon also told us that she would have a harder time bouncing back if she underwent a total mastectomy.

Thank you again for your support and guidance. Seniors yoga would be right up my mom’s alley as well.

Stay well 🤗

T2022
1 Posts

Hi,

I'm new to this group along with the horrible word cancer, I was diagnosed in Dec with 2 cancers, 1 bladder cancer stage 1 and the second one was breast cancer, er+ pr+ her2-. I had surgery on the bladder and two weeks ago I had my right breast removed. The mass inside was 5.3 by 4.3. They remove 4 lymph nodes and received the report that they were clear. I go to walker cancer clinic on Jan 31st to discuss my treatments. I took it as some positive news today as the lymph nodes were clear. Should I be more concerned by what I'm reading. Have I maybe missed something? Or am I over looking something. Any answers would help that you. I'm 48. No history of breast cancer in the family.

Thanks

supersu
727 Posts

good morning and hi from Alberta @T2022!
welcome to this community 🤗

sounds like you've had lots going on lately. double cancer diagnosis is a LOT to take in.
@Skye could you help support this member? I believe your stories are similar.

glad to hear that you've had the surgery(s), the fact that there is no disease in the lymph nodes sounds very POSITIVE. I'm not a doctor, but I know I was tremendously relieved when I found out my left sided breast cancer had not invaded the nodes.

at your appointment on the 31st you will get tons more information. if you are interested in a great list of questions; @Runner Girl is the pro at that. I will tag her here so she can share that with you. it will give you a great idea of what kind of stuff to start spending your mental energy on….and you will not feel like any stone is unturned!

incidentally, I work with cancer patients every single day and it may surprise you that the large majority of them DO NOT HAVE A FAMILY HISTORY. I find this weird; as we have all been told along the way that family history is such a big deal….I'm not so sure it is.

so glad you've found this place for information, sharing of stories, and hey---even a laugh or two every once in a while.

please let us know if we can support you - any question is valid. big or small if you post about something - good chance someone out there is wondering the same thing.

have a good weekend.

cheers
su

#concurrentcancers #newdiagnosis #welcomenewmembers

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