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Treatment Plan

Treatment Plan

Posted by R33 on Nov 20, 2020 6:01 pm

Hello,

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!
R33

Re: Treatment Plan

Posted by Nix on Nov 21, 2020 7:46 am

It will be your medical oncologist who has the final say as to whether or not you will have chemo and/or radiation. It seems fairly standard not to meet with them until after surgery, then they will have all the pathology results of the tumour that was removed to guide their decisions.

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.

Re: Treatment Plan

Posted by ashcon on Nov 21, 2020 9:04 am

Hi R33
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! 
---- "Nothing ever becomes real till it is experienced." ----

Re: Treatment Plan

Posted by cancertakesflight on Nov 21, 2020 2:17 pm

R33‍ I am in agreement with Nix‍ and ashcon‍. Surgeons do not have the same training and knowledge that the oncologist has. My surgeon did not make any comment about what treatments she thought I would need but she seemed surprised when I told her the treatments I had.

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.

cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Treatment Plan

Posted by Nix on Nov 21, 2020 3:05 pm

cancertakesflight‍ My understanding is that expanders are temporary, they are placed at the time of skin sparing masectomy to hold the space/allow skin stretching as needed prior to having the actual implant placed at a later time. So if they are impacted by radiation they’d be coming out anyway.

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.

Re: Treatment Plan

Posted by cancertakesflight on Nov 21, 2020 4:35 pm

Nix‍ Thanks for the details. I know there are people who do have immediate reconstruction. It still amazes. I have one friend who had expanders in for ages because of complications. She  then had reconstruction too soon after her radiation treatments ended. The skin had not healed enough. Without getting into the details, she had three surgeries before she successfully had her implants. 

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.

cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Treatment Plan

Posted by Nix on Nov 21, 2020 5:50 pm

cancertakesflight‍  It really is so personal. Thankfully for myself it is looking like a lumpectomy will be possible because the neoadjuvant chemo is working so well, providing I don’t have a gene mutation that carries a high risk of new primary breast cancer forming (should find out within a week or so now on that). If I do then it’s double masectomy for me. I’ve decided to go flat at first, with the intention to eventually, hopefully have reconstruction with my own tissue. Still hoping my genetic testing will come back clear so I won’t have to go down that road, but have been attending zoom information sessions just incase. The number of options can make your mind spin. So important to go over everything with your care team because everyone is so different!

Re: Treatment Plan

Posted by elle29 on Nov 22, 2020 7:03 am

Good Moning Elle 29 , I read the links and more  further on CCS and wondering now 2 of u mentioned NeoAdjunctive therapies . How did u get this ❓Does a persons get prescribed this❓I am still scared of Radiation ☢️  as a treatment . Meanwhile first  doing 2 more diagnostics now for Oncologist in Nuclear Medical Imaging .MUGA , + Bone Scan . 
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❓✅

Re: Treatment Plan

Posted by K70 on Nov 22, 2020 10:45 am

As was mentioned earlier, it is important to know your tumour markers, tumour size/number and lymph node status as these are some of the key factors that drive the decision regarding neo adjuvant chemo. If you are node negative with invasive ductal carcinoma, there is a very good chance you will not need radiation. The final plan for any radiation will be driven by your margins post mastectomy and results of your Sentinel Node biopsy. You may also get an Oncotype Dx test from your surgical specimen to ascertain if you would benefit from chemo after surgery. I have just finished my neoadjuvant quadruplet of DOCEtaxel CARBOplatin Trastuzumab pertuzumab. I am node negative as per my imaging, had multifocal disease and am ER+ PR- HER2+. For me the HER2 positivity is what drove the need for chemo before surgery.  I am 50 and have opted for nipple sparing Left mastectomy with immediate autologous reconstruction. They use your own tissue to rebuild your breast, oftentimes they use abdominal tissue, mine will use the inner thigh. Because it is your own tissue it is less impacted by radiation if needed down the road. Getting expanders I believe will leave your options open, they can deflate or remove if necessary.  This was one of the routes that had been discussed with me.  There are no wrong decisions as we do not have a crystal ball. The referral for a malignant diagnosis for me also started with the surgeon, but given my HER2 status, the size and multifocal disease, I was then referred to med onc and rad onc.  I’m continuing on my biologics until my mastectomy and PAP flap reconstruction, then back at it afterwards for a total duration of a year of adjuvant, then I still have to discuss what treatment I will get for my hormone positivity after that.  I find that you do not get a lot of follow up from plastics as I have seen my surgeon once and my surgery is Dec 18th, they did make referrals for me for education etc, but nothing yet, it will happen in due time. I did also want to explore the autologous route so met with a second plastic surgeon as my primary plastic surgeon did not do microsurgery. The result is now both plastic surgeons will partake in my surgery and I had to change my general breast surgeon as the original did not have privileges at the other hospital in the region. If you  want to explore other options you have to advocate for yourself and then be comfortable with your decision as we can only live in the moment, I found the surgical decision to be way more difficult than jumping in to the chemo. I wish you well!!

Re: Treatment Plan

Posted by JayRay on Nov 22, 2020 11:19 am

Hi everyone, 
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. 

Re: Treatment Plan

Posted by elle29 on Nov 22, 2020 12:33 pm

Hey there ❗️Ellle 29 I read the 3 links  below , thank you . I had Surgery;  partial  mastectomy for  IDC , stage 2 , 1A Node , grade 3 .
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 ☑️ 

Re: Treatment Plan

Posted by Buffythevampire on Nov 22, 2020 5:44 pm

R33‍ I initially was diagnosed with DCIS in October 2018 after a lumpectomy but my surgeon sent me for a MRI and a second larger tumor was found. I had a mastectomy/expander surgery in March 2019 plus they removed some lymph nodes. It was after the surgery that I received my pathology report. This time I was diagnosed triple positive IDC. I did have chemo which included herceptin but not radiation and I am on an oral pill (hormone blocker) Letrozole. Finished chemo/herceptin and almost finished first year of five for Letrozole. Reconstruction is almost done. I have an implant on one side and the other has been reduced/lifted. The only thing I have left to do for reconstruction is the tattoo, which will be in January of 2021.

I believe you get radiation if you had a lumpectomy but not with a mastectomy.  

Re: Treatment Plan

Posted by Nix on Nov 23, 2020 6:39 am

Buffythevampire‍ Radiation is a possible treatment with either lumpectomy or mastectomy. It all depends on the margins achieved, whether there is node involvement, cancer properties, etc. 

Re: Treatment Plan

Posted by Essjay on Nov 23, 2020 7:48 am

elle29‍ sounds like your questions about the pathology are good ones for your oncologist. The report should include the ER, PR and HER2 status (+ or -), which will indicate whether your cancer is hormone positive or growth factor positive.

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
Triple Negative Breast Cancer survivor since July 2018

Re: Treatment Plan

Posted by R33 on Nov 23, 2020 7:04 pm

Thank you everyone for your messages.  I should mention the surgeon that gave me the treatment plan is a surgical oncologist. I now know the difference between a medical and surgical oncologist. I am getting a copy of my pathology report on Wednesday so I will know the tumor markers and other details then. I will post them once I know. 

Re: Treatment Plan

Posted by KJR on Nov 23, 2020 8:41 pm

Great insights. I have triple negative invasive lobular carcinoma. no one has seen it before. doesn't inspire a lot of confidence...
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...
Best