MRI shows non mass like areas of enhancement ughhhhh!!!

allisonp

Hi everyone- I cannot sleep

Last Spring, I had genetic testing done and found out I was a carrier of the genetic ATM breast mutation increasing my risk for breast cancer. My older sister, now 52 years old, is a breast cancer survivor. She was diagnosed at 39. I believe it was IDC/DCIS Her2 + if I wrote that correctly. No family history. I also have very dense breasts causing me to have had two diagnostic mammograms after my routine- but everything has always been fine never needing a biopsy. But back in Nov 2018 I noticed a feeling in my upper right breast which almost felt bruised but no lump. It only bothered me if I pressed on it. I immediately called and was seen for a mammogram. They saw nothing. They then sent me the same day for an ultrasound which the dr reassured me was fine and not to be concerned. I was told nothing could be seen. I attributed this bruised feeling to maybe a tight sports bra that caused a lot of friction when I run (I love running). And I went on with life. Last Jan I had my mammo and it was fine. I did need a second diagnostic of my left breast at the time because they’re so dense. But everything was fine. The breast in question is my right so I was actually glad nothing was seen on that one.

I saw a Dr through Mass General for a consult. Some may think I’m jumping the gun- but I wanted to see about ? Prophylactic double mastectomy with reconstruction. The dr was supportive and asked I get a MRI before we proceed any further. I agreed. Last Thursday I had the MRI. And......yesterday got the dreaded call that something needs further evaluation. Seems I have a Progressive clumped non mass like enhancement of the right breast measuring 2.4 x 2.1 x 2.3 cm. The one I’d questioned almost 2 years ago! The docs at Mass General are reviewing further and will get back to me in the next day or two with a plan. Ruling out DCIS. Guessing a biopsy. I’m so nervous. I wasn’t expecting this. I couldn’t imagine going through this every 6 months screening. Before this I was leaning towards prophylactic double mastectomy with reconstruction and now I’m even more sure. Please please give me advice. I’m 45. Very very active. And I just feel so alone!

Mavericksmom

Hi, undoubtedly women who have more helpful information will post here. Unfortunately I can only give you some limited insight. I had breast cancer twice, the second time I knew I would need a mastectomy. Like you, I wanted a bi-lateral mastectomy but I didn't want reconstruction. To make a long story short, the cancer hospital I went to will not remove a healthy breast unless the patient is positive for one of the BRCA genes. I am negative. The doctor talked me into having DIEP reconstruction. I held in my anger at being refused a double mastectomy for most of the 18 months since my surgery. Recent events (a scare that I had breast cancer in my reconstructed breast) have changed my mind. I now feel my doctor absolutely made a better decision for me. That said, we are all individual and there is absolutely no "one size fits all" treatment for breast cancer.

That said, I still believe in a woman's choice to have a bi-lateral mastectomy, but my point is not to rush into this with an idea of what you want before you know what is there. Surgery is not a walk in the park for anyone, it is serious and always has a chance, albeit a small one for some, of death.

You do not have the full information on your mass yet. You are going to a well established facility. Give them a chance to provide you with information. People always want to have surgery and get cancer out of their body a.s.a.p. but for most, a little time isn't going to change the outcome and gives better information to understand the options. As I understand it, you don't even know if your mass is cancer or not at this time. Is that correct?

Take things one step at a time. I know it is hard to do, I have been there, done that, more times than I care to say. You are young, active and I have no doubt, a very full healthy life a head of you. Right now you need to be a little patient. Don't worry about testing every 6 months, that is too far in the future.

Are you meeting with this doctor to discuss the next step or is he going to call you and tell you what will be scheduled? That is what you should focus on now. Put everything else on a shelf in your mind. ONE STEP AT A TIME!

One last thing, huge ((((CYBER HUG)))) Hang in there, myself and this community are here for you!!!!

alto

I know it's scary - remember, you have a very experienced team for diagnosis and treatment, and you have the community here to share their experience and support. You aren't alone - we've been there and we get this crazy experience. You need more info before you can decide what to do next. If they're talking about 'ruling out DCIS,' that sounds not too bad - like it could be ductal hyperplasia or something like that. But you're right to be concerned. Just know your team has seen it all, and will have a plan to take care of you.

If you are feeling a ton of anxiety as you go through this process - like you can't think of anything else and you can't sleep, etc. - consider meeting with the social worker or a therapist (talking it out really helped me). The social worker I met with at MGH was great. And of course, we're here. You can also ask your regular doctor about getting an anti-anxiety prescription. Being able to get a good night's sleep is important during these times.

MelissaDallas

MRIs are very sensitive but also very nonspecific. This is why they lead to lots of (benign) biopsies.

32B

Allisonp, I just got a call from Mass General this morning that they found something they don't like on my MRI and want me to come in for a mammogram and ultrasound to follow up.

I had UMX for DCIS/IDC two years ago so I have routine monitoring.

Sending you hugs and thoughts. We are lucky to live in a part of the country with so many wonderful hospitals. I had a great experience with MGH, but hopefully neither of us will have to spend much time there!

allisonp

Thank you Alto. Each time I hear of how MGH knows their stuff I’m reassured tha I’m in good hands. Still waiting for their call after further review of the MRI on what to do next. I’m guessing a biopsy. I’m a nurse, and you’d think with my medical background I could relax a bit more and be more level headed about all of this. My mind just goes to crazy places. My breasts are extremely dense and I just hope all the mammograms these last 10 years weren’t hiding anything. I can only move forward now. I’ll keep you informed. Thank you for the support.

allisonp

32B- we are soooooo lucky living where we live. My sister was diagnosed with DCIS/IDC at 39. Had a double mastectomy with reconstruction and 12 years later she’s doing great. She did everything through MGH. I have complete faith in them. Please let me know how you make out

allisonp

Hi Mavericksmom- you are right. I must try to be as informed as I can and open to the doctors as they do the testing and educate me. There is so much information it’s overwhelming. And there are so many different options.

alto

Yeah, allisonp, there's something about cancer that must set of a huge adrenaline rush or something that just blows the mind. I'm usually a thoughtful, calm decision maker, and it seemed like the time I needed that most, that lovely rationality and objectivity escaped me. It was tough to make body-altering choices about something I didn't even want to be involved in.

If you think you might want recon, once you get the diagnosis, you can get recommendations for plastic surgeons and make appointments to learn about your options, as it may make sense to combine the cancer surgery with your reconstructive surgery. At MGH, I was offered above the pec implants, with expanders put in after the mastectomy surgery (assuming they could get good blood flow). There are other hospitals in Boston where sub-pec implants are more common. In the end, I decided recon wasn't something I wanted to do, and a prosthetic would get me where I wanted to be; but obviously it's great to have the option of plastic surgery.

Another thing is, you don't have to decide everything and do it all right now. You can ask your team about the kinds of options you have. What I was told was - You can do one breast now, and the other later. You can get a lumpectomy first, and if you find yourself crazy with worry, you can get a mastectomy later. You can get implants, and have them removed if they are causing you pain/discomfort. Options are probably different for everyone - but if you're not ready to make all your decisions now, ask which ones you can make now to be safe from the cancer, and what options you'll have later for symmetry or peace of mind. I opted to keep one breast because it sounded like I'd get the twice-a-year scans I wanted on the whole chest, which was important to me. And during recovery, it was nice to have one side that was not affected by surgery. But I know people who did it all at once, and that works, too.

32B

Hi allisonp, did you get your results yet? I've got a mammogram, ultrasound, and potentially biopsy tomorrow morning and I'm freaking out a little.

allisonp

Hi 32B-

Wishing youthe very best tomorrow! I'll be thinking of you. The testing is by far worse then anything. Actually- the waiting will probably be worse.

Mass General called me yesterday to say they the MRI they received was that belonging to another patient. They were even fed exed. Imagine?? I had my MRI closer to home at my local hospital because it was closer and would save me the trip into Boston. I was told it was super easy for Mass General to get the disk and I was fully expecting normal results. Ugh. Had I have thought they'd be abnormal I'd have just done everything there to begin with. That's what I'm doing now. Boston driving makes me nervous.

I know where you are though. Trust me. Our minds can run away with us. And concentrating on anything is hard. I'm a nurse, and trying to work and concentrate is so difficult right now. As if this weird world with Covid didn't cause enough stress. Thank you for checking in. Please let me know how you make out. I'm guessing I'll need a biopsy too. My report suggested a possible MRI guided biopsy but the radiologists at MGH will give their opinion and that's what I'll follow. I'm going to try to take my dog for a walk. Hopefully this beautiful weather will help clear my mind.

Mavericksmom

Oh Allison! You sound like me, if things can go wrong, they usually do! As they say, hind sight is always 20/20. So now you are in full "wait" mode again? I hope you get some answers soon.

Do you have a patient portal at the hospital where you had your MRI? If so, I bet the report is posted on there. Usually tests post after a few days even if they haven't been read by the doctor. I can't tell you how much I learned from reports from my patient portal before I heard from my doctor, including when my surgery was scheduled! I know doctors understandably aren't happy when the patient knows information before they had time to present it, so I don't tell them I knew ahead of my visit. My opinion is, it is my body, my test, my money/insurance and you work for me, therefore I want to know what is going on asap!. If you don't have a patient portal, consider getting one in the future if you will be using that facility for any testing in the future.

32B, I hope things went well for you today!

Breast cancer, the gift that keeps on giving! Ugh!

AliceBastable

I'm always glad to get results before seeing the doctor so I can make a list of questions based on those results.