Help/ So undecided

ajhafc78

Hi Everyone

I was diagnosed back on Nov 13th, and really think it is just starting to sink in. I have met with my team, had genetic testing done (still awaiting results) and scheduled surgery. I am currently diagnosed with IDC, stage 2 maybe, grade 3. Main tumor is 3.7cm. My hospital doesnt really believe in MRI's to many false positives. I was originally thinking mastectomy with reconstruction, I am only 37 and I don't really want to worry for the the next 40+ years. They convinced me with good logic that a lumpectomy with radiation was the way to go. I am ER+ PR- and HER2 Equivocal (waiting on FISH results)

Now the dilemma. I recently found my biopsy report which some how my team never received. I had to scan my copy to them.

It states "Note that there are additional calcifications inferior and medial to the biopsy site in the subareolar left breast, which are suspicious for additional sites of disease. Because of the patient's age and breast density, an MR should be considered, as well as a stereotactic biopsy, to evaluate the full extent of disease."

They have the chief radiologist re-looking at the films and will get back to me. But it is making me question the logic of a lumpectomy. Add to that I am in the 10% extremely dense category and my right breast is filled with benign cyst, a harmatoma, and other benign junk. I have read the lumpectomy vs mastectomy thread. I feel left in limbo. On one hand maybe lumpectomy will be ok but how will I know they got it all if there are two other spots they dont think need to be tested, which leads me to how will they find it. I have a clip in the biopsied spot. On the other hand the mastectomy will ensure its all gone just a longer bigger surgery.

How do I make the decision? Do I force the MRI? I am at a loss and currently emotionally a wreck at least some of the time. I feel like when I met with the team the first time I was so numb and in shock as was my husband who went with me we just kind of nodded and agreed.

Any insight words or wisdom would be appreciated. Thank you!

Skittlegirl

Maybe look into getting a second opinion with a different surgeon. I also have like a 12 cm region between my two tumors of junk, so my surgeon explained that a mastectomy was my only option for that breast based on NCCN guidelines. My region of junk was seen via MRI.

Sawyer

Wow; my situation is very very similar..... I went with the lumpectomy. My genetic screening was negative. Unfortunately the margins weren't clear and my nodes weren't clear. So I had to go back for a re excision a week later; first surgery 10/27, second 11/6. Now chemo isn't an option so I had the surgery for the port on 11/25 and started chemo last week. My surgeon encouraged a second opinion when I was trying to decide and I found that extremely helpful. I also asked for information/studies and researched myself a bit and found the mastectomy didn't make sense to me personally. A second opinion would be my best advice. Good luck.

SummerAngel

I would absolutely push for the MRI. I'm also surprised they didn't want to biopsy the additional areas.

Obxflygirl1

I had a bilateral mx . I'm older but wanted to let you know my train of thought. I'm a worrier and knew that I would always be waiting for the other shoe to drop So,it was a no brainier for me. The surgery was not too horrible and I stayed 2 nights in hospital but only because I had a reaction to the morphine. That being said, I was not prepared totally for the complete loss of sensation across my chest. While my plastic surgeon did an excellent job , the loss of sensation is still hard. I would definitely get a second opinion and push for an MRI .

mustlovepoodles

I agree, get a 2nd opinion if you are unsure about treatment. Originally, my treatment plan was LX and surveillance, with radiation and AI (I'm post-menopausal). My stats are very similar to yours: ER+/PR- HER2-. My family tree is just loaded with cancer--32 cancers in 1st & 2nd gen relatives--so I had the 32-gene panel done. Turns out I have not one, but TWO mutations significant for breast and colon cancer, thyroid cancer, and pancreatic cancer, all of which are in my family.

In my case, all this has drastically altered my treatment plan. ER+/PR- is a generally more aggressive cancer. My first MO was very blasé about all these findings and we didn't click, after 2 meetings. My second MO took a long look at my tests and medical family tree. She immediately said, "You need chemo. And WHY do you still have your breasts?" She is very concerned and my treatment plan has totally changed--BMX, ovary removal, and AI for sure. Possibly radiation. Yikes! But as she said to me, "These genetic mutations are serious. If you opt out of this treatment plan, you will have surveillance for the rest of your life. Every little thing will be tested and biopsied." I'm only 59, so I could live a long time. Do I really want to go down this road? No. So I'm going with this MOs aggressive treatment plan.

I wish you the best, no genetic mutations, and a simple treatment plan with no SEs.

BarredOwl

Hi:

Hopefully, the team will be persuaded by the radiologist's recommendation for MRI and biopsy.

However, I do not understand how the team did not have a complete copy of the biopsy report or did not know to ask for it. What information were they considering when they recommended a treatment plan?

As you have learned from experience, it is very important to obtain copies of all underlying reports for all imaging (not a form letter) and pathology tests, including supplemental tests like FISH. Review these to the best of your ability, ask questions, and follow up on any concerns as you did here. Trust but verify to ensure that potentially relevant issues are being considered in any proposed treatment plan. One would wish it were otherwise, but you must be your best advocate.

I see you have 3.7 cm main tumor and are awaiting the results of FISH testing due to HER2 equivocal results. Please insist on completing HER2 testing prior to undergoing any surgical procedure. Strong consideration should be given to "neoadjuvant" chemotherapy plus targeted therapy (with an antibody that targets HER2, such as trastuzumab/HERCEPTIN) in the case of HER2-positive disease. Such "neoadjuvant" treatment is administered prior to surgery. I will hope for clearly negative results for you.

Although the diagnostic process can be exhausting, please do consider obtaining a second opinion, in view of your concerns about the actual extent of disease, MRI, possible need for an additional biopsy, and best course of action. In the first consultation, the language is all new and you are in shock and don't know what to ask. The second opinion may confirm or modify the first, may lead to additional testing, and at least provides additional input, perspective, and opportunity to ask questions. The process may help clarify things for you.

Look for a center of excellence, with a comprehensive breast center. Even if you need to travel a bit farther, it is worthwhile to tap into that expertise. You may choose to seek treatment where you are or with the second opinion team. For example, if you are reasonably near an NCI-designated cancer center, that is a great option.

http://www.cancer.gov/research/nci-role/cancer-cen...

Others have recommended NCCN-member institutions:

http://www.nccn.org/members/network.aspx

Second opinions are very common and are expected. Confirm insurance coverage, and be sure to confirm the institution/doctors are in network. Contact them to ask about their process and how to go about collecting/sending any materials they may need to review (e.g., pathology slides, imaging, written reports, etc.)

I was initially diagnosed at a community hospital. I sought a second opinion in Boston, mostly because I wanted to confirm the recommendation for unilateral mastectomy. That recommendation was confirmed, but I was surprised that an additional diagnostic mammogram was ordered, which led to surgical biopsy, and the discovery of bilateral disease.

Probably you have seen this excellent post from Beesie about Lumpectomy vs Mastectomy Considerations, but just in case:

https://community.breastcancer.org/forum/91/topics...

BarredOwl

ajhafc78

They made the decision based on the pathology report, which I mistakenly assumed was the biopsy report, the ultra sound and the mammogram. I am up at Dana Farber so I naively felt that they would know way more then I did and questioned nothing.

I have had zero additional testing which I found odd, no blood work, no MRI, just the Genetic test which I requested. I believe I will follow up with a second opinion just to ease my fear and concerns. I appreciate everyone taking the time to chime in and respond. Coming here feels more helpful then two hours in the office with doctors. I hope once I am through this I can be of as much help to a new person starting this as you are all to me.