Posted by R33 on Nov 20, 2020 6:01 pm
I was diagnosed with invasive ductal carcinoma last month. I have met with the surgeon and plastic surgeon. I have opted for a double mastectomy with reconstruction. I am having tissue expanders put in after the mastectomy. I am in my early 40s.
I was advised that radiation and chemo are not in my treatment plan. I was advised this at my first visit after being diagnosed last month. I have not met with an oncologist and was advised that I wouldn't until after my surgery. I also haven't heard from my surgeon since.
Has anyone else had a similar treatment plan? If so, did your plan change after surgery?
I am awaiting a call from the surgeon's office for a surgery date.
Thank you in advance!
Posted by Nix on Nov 21, 2020 7:46 am
Do you know the ER/PR/HER2 status of your cancer? That plays a role in treatment decisions (as there are other treatment options outside chemo and radiation if any of those markers are positive). If you choose to share the information here it will allow others to know if they have similar cancers when they share their treatment stories.
Personally I am having neoadjuvant chemo (chemo before surgery) but my oncologist is optimistic I may not need radiation. My cancer is ER+/PR+/HER2- so I will also take Tamoxifen for a number of years after surgery.
Posted by ashcon on Nov 21, 2020 9:04 am
Welcome to this great community. A cancer diagnosis is such a difficult thing, but you will find support, caring and wisdom here.
I agree with what Nix says about relying on the medical and radiation oncologists to determine whether or not chemo or radiation are required based on the pathology results of your tumour.
Not to scare you, but I was told by my surgeon that all I needed was a lumpectomy then radiation. The pathology revealed stage 3 Triple Negative breast cancer that had gone into nodes for beyond what the surgeon thought. I ended up needing full on chemo, followed by another surgery, double mastectomy, then (finally) radiation.
The fact that you said "invasive ductal carcinoma" indicates the cancer has spread to some extent outside of its self-contained tumour walls. The spread could be very minimal, but that will be determined as mentioned in the pathology.
Here are some links for you to help you understand more. Perhaps help you to form the basis of some questions you may want to ask your surgeon.
Breast Cancer Diagnosis
Invasive, Ductal, Grading and Pathology
Because some early stage cancers still require chemo, here's some information on
Chemotherapy and Oncotype testing
Also, radiation alters the skin quite significantly, so reconstruction is done after any radiation treatments to allow the skin to heal and not damage any implant work.
At least that's what I've been told - I did not have any reconstruction and am "flat" today.
So I would be asking "how are you so sure I don't need chemo or radiation if we don't have post surgery pathology results yet?"
This all is not to scare you....
The best thing you can do is get informed and involved. Someone once told me that you are an part of your medical team -equal to all your doctors- and you wouldn't want them making recommendations without knowing what they were talking about!
This is all stuff I wish someone had told me 3 years ago when I was diagnosed.
I found when I knew what was going on, I felt an incredible amount of calm while going thru my treatments. I wish the same for you!
Posted by cancertakesflight on Nov 21, 2020 2:17 pm
Without truly knowing your full treatment plan, Im not sure how someone can say yes we can do implants when radiation affects your skin and chest wall. I didn't have reconstruction but I was told to hold off on getting a prosthetic breast for six months after my radiation treatments to allow everything to aort of settle.
As suggested, I would ask more questions before making a decision. Things often seem different once surgery is done and pathology comes back. The more you know the better the decisions you can make.
Posted by Nix on Nov 21, 2020 3:05 pm
On a sort of related note, I have a friend who had immediate reconstruction with implants because they were told by their oncologist they did not need radiation. However their margins weren’t what the team hoped for so she had to have radiation with her implants in place. It’s possible but it did impact her implant and now she isn’t as symmetrical as she was before the radiation.
Posted by cancertakesflight on Nov 21, 2020 4:35 pm
Because of my breast size the plastic surgeon said that she would not do implants because it would be too heavy. Each situation can be so different.
i never had reconstruction and now wish I had had both breasts removed and gone flat.
It's such a personal decision.
Posted by Nix on Nov 21, 2020 5:50 pm
Posted by elle29 on Nov 22, 2020 7:03 am
And some Women here mentioned they are Negative Negative I have my path report "how do I determine that part and where ❓"Genomes and Hers as I have 3 daughters who have to get mammograms 😢
Also someonsaid they watched a video to be informed . How becuz yes it is a lot to read using my weekends b4 speaking to Oncologist & Radiologist by phone first soon❓✅
Posted by K70 on Nov 22, 2020 10:45 am
Posted by JayRay on Nov 22, 2020 11:19 am
I was diagnosed in Sept with IDC ER+ PR+ HER2-. My surgeon told me I probably would just need surgery. That has changed since the surgery (right mastectomy) because 3 nodes were involved and a second tumor was found in the pathology. I've had the bone scan and next week will have the abdominal/chest CT. I am still waiting to speak to an oncologist so no idea really what my treatment plan will look like. I haven't had a MUGA scan nor is one planned.
All this waiting is the hardest part for me right now. I just wanted to chime in. I plan to have prophylactic mastectomy on the left side with autologous reconstruction (if possible) after my treatments are completed. I'm 59 and have an amazing circle of family and friends supporting me. I've been reading lots and am grateful for this forum.
Posted by elle29 on Nov 22, 2020 12:33 pm
Surgeon said he got all the cancer out ,margins clear .I feel good & incision healed from inside ,
Where did someone figure or tell on the Pathology Report about ' negative negative ❓' Onco Radiologist DR will call by phone appt .
Oncologist is sending me to my hospital for MUGA , bone scan & CT scans , then phone appt. .
Then by Dec 8 see Onco at Cancer Centre for visit for Onco to do breast exam . Sounds like a treatment plan will be determined with that done ☑️
Posted by Buffythevampire on Nov 22, 2020 5:44 pm
I believe you get radiation if you had a lumpectomy but not with a mastectomy.
Posted by Essjay on Nov 23, 2020 7:48 am
to answer your question about neoadjuvant chemotherapy - this is given before surgery to shrink tumours, but you have already had your tumour removed, so any chemotherapy will be post surgery.
Radiation follows lumpectomy to give you the same benefits as mastectomy, and they will irradiate the area of the positive node.
Hope your CT, bone scan and MUGA go well - it’s tiring having all these tests but they will help direct your care.
best wishes, Essjay
Posted by R33 on Nov 23, 2020 7:04 pm
Posted by KJR on Nov 23, 2020 8:41 pm
I am replying to you because I, too, found my decision to have a DIEP flap reconstruction to be the most difficult. Unlike chemo, reconstruction is an option. Plus, it is cosmetic surgery.
Mine was skedded for last March but was cancelled because of Covid.
My reconstruction was to happen after four months of chemo and along with my mastectomy.
ut, as I mentioned, it did not happen and instead I had the mastectomy, tissue expander put in and reduction on the other side.
Following surgery I had radiation and have been on oral chemo for the past six months.
I am supposed to finally have the DIEP the end of January but am, understandably, concerned that this will be cancelled again because of Covid,
My plastic surgeon said the expander shouldn't be left in for quite so long but Covid has removed choice,
Please let me know how your surgery goes. I still waffle about it...
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