Posted by Dooley85 on Aug 9, 2020 12:06 pm
I am new to this forum. So glad I found it.
I was diagnosed in March 2020 just as the world shut down due to co-vid. I have invasive breast cancer, HER2 positive (E/P negative) with T2/N1 tumour approx 1.7 cm.
I completed chemo last month and am slated to have surgery in a week followed by radiation.
A lumpectomy has been recommended By my surgeon but as the surgery grows near and I research more, I am thinking a bilateral mastectomy is better. I have dense breasts and a fear of recurrence.
Looking for help on making this decision - losing sleep and can’t seem to think straight on this one. Any suggestions on how to make the final decision (not even sure the surgeon would do a bilateral?)?
Posted by Kims1961 on Aug 9, 2020 1:59 pm
Much like you, i was in the same position, although i'm 20 yrs. older. I had IDC, stage 2, HER2+ and ER+. I had surgery first and a lumpectomy was recommended. I researched, reached out and spoke with my surgeon. I wasn't assigned an oncologist until after surgery - so that is a real benefit for you.
A couple of things i considered:
1. I was 56 - finished having children and was prepared to say goodbye to my breasts as i was going to do reconstruction. I didn't consult with my husband, as i felt it was my decision to make, but i also knew i had his support.
2. My surgeon was on board for the simple fact, that i had taken the time to think about the importance of the decision and my rationale for it - that of minimizing any further health issues down the road.
3. You may want to talk to your surgeon to see if bilateral is an option - don't want to get your hopes up for this as an option, in case it is not.
4. I looked at images of women who went flat. Although I have no breasts - i would call my chest concave more than flat. We still have a ways to go with our surgeons to get a "clean"aesthetically flat look. That being said, my decision to go flat wasn't about image but about health.
I will attach some articles i found helpful and there is a good facebook page " Flat in Canada".
There is also a good tool from Ottawa Hospital in helping make decisions:
I hope this is helpful. Please let me know if have any questions. I'll also tag some other folks that are a wealth of knowledge!
Thank you for posting! Kim
Posted by ashcon on Aug 9, 2020 6:01 pm
Glad you have made it through chemo. What did you find to be the worst part of chemo?
For me it was losing the hair. I could tolerate the nausea, headaches, fatigue, but losing the hair was rough!
Like Kims1961 I had my first surgery (lumpectomy) before chemo, but then, like you, I leaned towards having a double mastectomy for my second surgery based on having dense breast tissue.
I was worried that if cancer returned or showed up in the other breast, it would be missed, like it was the first time around.
Plus I learned that women with dense breast tissue are at an increased risk of developing contralateral breast cancer (cancer developing in the other breast) than women who don't have dense breast tissue.
I did end up having the bilateral mastectomy, no reconstruction, so, like Kim, I am also flat.
That was my decision and I felt "right" when I made it.
You will feel "right" about your decision whatever that may be, when you make it.
By the way I ended up switching surgeons to one who would do the bilateral mastectomy. The first one was hesitant.
Please make sure that you have a medical team who will support you and honour your decision, whatever that may be.
Posted by Dooley85 on Aug 9, 2020 7:44 pm
Posted by Essjay on Aug 9, 2020 7:55 pm
I opted for the lumpectomy since my lymph nodes were soft, and all the signs were I’d found the cancer early. I actually asked my surgeon how he would advise his wife - he said lumpectomy. Mastectomy seemed overkill, and I wasn’t ready to lose my breasts.
As it was a ‘big chunk of me’ was removed as the surgeon described things - 8cm by 13cm by 5cm from the lower quadrant of my breast and then I had the lymph nodes from my armpit removed (5 in total, all negative for cancer). I had boost radiation doses to deal with the imperfect margins - the surgeon couldn’t have taken much more he said).
I decided that if I had cancer again and had to have more surgery, I’d opt for mastectomy and stay flat, since I’ve seen too many friends struggle through multiple surgeries to reconstruct and still been unhappy with the results.
So I’m left with 1 and 3/4 breasts. Lightly padded bras deal with the misshapen one. It worked out for me.
best wishes in making your decision
Posted by Buffythevampire on Aug 9, 2020 10:45 pm
I am finished my treatments except for Letrozole (will take for 5 years). On July 2nd, 2020 I had (hopefully) my last surgery. One breast now has an implant and the other has been reduced/lifted.
Posted by ashcon on Aug 10, 2020 9:09 am
In my case, a second surgery was required after I finished chemo to remove remaining axillary lymph nodes on R side. The initial lumpectomy surgery was successful in getting clean margins, but 4 of 8 nodes were positive, and it seems the sentinel node biopsy was not enough, as my cancer had decided to spread to more nodes shortly after I started chemo.
My situation was not common from what I am told but, as you can see from others' stories here, there may be various reasons a second surgery is required.
I requested, and received, a prophylactic bilateral mastectomy at the same time the axillary nodes were removed. It was a tough decision, but, as mentioned, I felt the right one for me and I don't regret it.
I hope these stories and experiences are helpful to you in making your decision.
Don't hesitate to continue to reach out, here or via PM, toaany member if you have any more questions!
Posted by Scottie5 on Aug 10, 2020 9:49 am
glad you are done chemo. I was diagnosed with invasive ductal carcinoma stage 2b with lymph node involvement in Dec 2019. Er and pr positive her negative. I also have dense breasts. I had sentinal node biopsy done when I had the mass in my breast biopsied and that was positive so I new going in for my surgery that they would take some of the axillary nodes. Plan was for surgery, radiation and depending on how much lymph node involvement chemo. When I met with surgeon she recommended a lumpectomy and indicated she had a lot of success with that approach - tumor was 2.0 mm. She didn’t feel a mastectomy would have given me more chance of success than the lumpectomy. She told me pre op that she would take as much breast tissue as she needed to make sure mass was gone and to get clean margins. In all I would say about 1/3 of my breast was removed. I have larger breasts and it was at bottom of my breast so really not that noticeable and don’t require any reconstruction. I had 18 lymph nodes removed and 3 were positive for cancer. The axillary node dissection recovery was harder than the lumpectomy due to how it impacts mobility of the arm and shoulder. Once I had surgery due to the lymph node involvement I had 6 rounds of chemo and currently am on my 7th radiation treatment of 25. So far I have been pleased with the results of the lumpectomy.
you have to do what feels right for you and is going to put your mind at ease.
wishing you the best🌈🌈🌈
Posted by Buffythevampire on Aug 10, 2020 9:51 am
Posted by Ineke on Aug 10, 2020 1:30 pm
Posted by amyr on Aug 11, 2020 1:55 pm
Posted by Justscared on Sep 8, 2020 10:45 pm
so I had my surgery on August 18 and just received my path reports today, but so much in a blur , I probably wasn’t listening carefully enough as she called me on the phone. Anyways, after a 2.5 cm mass removed and SLN removal she told me that lymph nodes are clear but has 2 areas she is Concerned about, which is skin and a lateral area. She had said that this is DCIS, and may have to have another surgery after she confirms this with a “committee”.
my confusion is that I was first diagnosed with invasive DC GRADE 3, ( not stage, stage was 1), and now I have DCIS, which he saids we’re pre cancerous cells. After all these scans and what not would she have not known this ahead of time and get it all? Or do you think this is her way of saying that the margins were not clear? Oh man I’m so confused. I should have asked more questions but just said ok. I immediate got on the phone with my aunt who has had this, and ohhhhh she was irritated and asking me why I’m just not on my way to radiation. Why do they have to go back in? She asked? Why after all these scans she did not see this? So of course it got my head going.
has anyone been in this situation ? I made an appt with my GP for tomorrow to MAYBE get some clarification. I also left a message for the nurse navigator to call me. What am I not understanding here? I’m very thankful there’s no lymph node involvement, but is this really spreading this fast as her not to know ahead of time? Oh I don’t know.
please reply if anyone had gone through this.
Posted by Wendy Tea on Sep 8, 2020 11:37 pm
When I received my results I was also given a printout of the pathology. I have read it many times and I probably still miss the nuances. If you are able to get a copy by fax or email or even by snail mail, that will help. I am glad you are asking questions and advocating for yourself.
Runner Girl and cancertakesflight Any thoughts?
Posted by Justscared on Sep 9, 2020 12:33 am
thanks for that. It almost seems like 2 diff diagnoses, and starting all over again. Yes I have asked for my pathology report by email, but have not yet received it. Very very new at this so all is so much uncertainty. I’m sure I’ll receive more clarification along the way. In reality I would just love to meet my oncologist already, but as I understand that won’t happen until I’m clear with the surgeon. Thanks for your comforting words.
Posted by Essjay on Sep 9, 2020 7:59 am
I too encourage you to ask for your pathology report, and when you call and ask for that, you should be able to speak to either your surgeon or your surgeons nurse and it’s perfectly reasonable to say you have some questions following on from your appointment. Your GP may have some of the answers and the nurse navigator will be able to see your file, so hopefully they get back to you.
Hopefully you can get a clearer picture of what’s going on second time around, and this will help you with any decisions you need to make.
Im sorry we don’t have the answers for you, but please know that many of us have faced similar issues of lack of clarity on what is going on.
Good luck with your GP appointment today.
Posted by Wendy Tea on Sep 9, 2020 9:49 am
Posted by Justscared on Sep 9, 2020 11:49 am
I got a phone call from the navigator this am, explaining to me that what she sees from the report is although the margins are clear, the masses in question are close like sitting on the margin, so I do feel better as I jumped too if these are different locations why were they missed? So now my surgeon and health team are all going to meet next wed to discuss if I need to go back in for surgery or if I can continue with my treatment plan without the extra surgery.
I still have my GP appt this afternoon, which I’m sure will clarify even more and hope to get that report! ( I still haven’t received it).
I will update next week, what a great place to chat and vent, thanks all!😀
Posted by Lianne_Moderator on Sep 9, 2020 12:15 pm
Having all this information coming at you can be overwhelming. At any of your appointments, ask if you can either record it or have them wait while you take notes. And never hesitate to stop them to explain it further, repeat it, or whatever you need. They should want you to leave there with a full understanding. And when you request your pathology report, ask who you can talk to if you have questions about it, if you are not given it and explained in person.
Let us know how your appointments go.
Posted by Buffythevampire on Sep 9, 2020 1:01 pm
Posted by Lucy77 on Sep 9, 2020 2:55 pm
Yesterday at my last ultrasound they were deciding where to put the radioactive seeds, so the DR. knows where to cut. They were having difficulty finding the margins of my 5 cm tumour. My tumour is large so I am concerned about what are the chances she'll get a clean margin. I have read in the discussions that people have had a lumpectomy but have to return for more surgery.
I have a strong feeling my lumpectomy may turn in to a mastectomy.
If I do have a mastectomy is there anyone who thought of having the other breast removed too?
I'm spinning in circles.
Posted by Sailor on Sep 10, 2020 11:30 am
Hi , I know what youre going through. I was booked for lumpectomy til a week before I was told it was triple negative. I was sent home after being told I needed chemo fitst folliwed by mastectomy then radiation . I left in shock. I asked both my surgeon and oncologist about double mastectomy but was told I didn't need it. Now I am on Xeloda as the pathology from surgery showed micro cancer cells in one lymph node and also er and pr positive tissue , heterogeneous cancer. Im not sure how the decission is made about double mastectomy but it might be a question to ask. Good luck with your treatment.
Posted by Lacey_Moderator on Sep 10, 2020 12:13 pm
The choice between lumpectomy surgery and mastectomy is a very personal one. Your feelings, preferences, priorities and lifestyle all play a part in your decision.
Is there a chance you can call the surgeon's office and discuss your concerns? I have heard of some people being told that they may need a mastectomy and the surgeon will decide during surgery, but this is discussed beforehand. I think it's important that you have another chance to ask questions. Our Cancer Information Helpline is also a great source for talking out information. You can call them at 1-888-939-3333. We also have information on our website: Choosing the surgery that is right for you I encourage you to read.
ashcon and Kims1961 - Both chose double mastectomies as the best treatment option for them.
One step at a time, you will figure out what works best for you with the help of your medical team.
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