Super scared and depressed
I have dense breasts and have kept up with annual Mammos. Last month, I had a mammo, diagnostic mammo, ultrasound, and stereotactic biopsy. Results came back as DCIS Grade 2. I just had a breast MRI and it's showing another area in the same breast (no suspicion of malignancy in the right) so they want an MRI-guided biopsy of that area. There doesn't seem to be any lymph node involvement.
I already suffer from depression and severe anxiety. On the report it says, "small pleural effusion." I Googled it and saw that it mainly is the result of cancer and one only lives for months after diagnosis. I've been crying since yesterday. I have not had anything to eat in 24 hrs. Can't sleep. I'm a wreck.
Does this likely mean the new area to be images is probably invasive and Stage 4 due to the PE? I had a consult with a surgical oncologist today and she tried to reassure me that I'll be ok. She thinks the pleural effusion is from a recent cold. She said she is more concerned about my mental health than the DCIS. This is so overwhelming. I had a chest x-ray one year ago and all was fine (no PE). I do have pain in my left rib, but no cough or chest pain. No recommendation from the surgeon I saw to see a pulmonologist but I'm trying to schedule an appt.
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Hi @loveislove , I’m sorry about your diagnosis. Right now no invasive cancer has been found so the pleural effusion is highly unlikely to be caused by metastatic breast cancer. There are various causes of pleural effusion including respiratory infections like pneumonia or inflammatory conditions including colds. There are many other reasons, some serious, but the usual protocol for a small pleural effusion is to see if it has cleared in a couple of weeks. This can be done with an x-ray lying on your side or a CT (I’ve been treated for a few of these.)
There are non pulmonary origins so it might be quicker to see your PCP who could evaluate other possible causes as well. That provider could also help with your anxiety if necessary. I hope the pleural effusion clears up on its own as they often do and nothing of concern is found on your scheduled biopsy. All the best!
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Thanks for the reply. The other area that needs to be biopsied in the same breast as the DCIS shows, "non-mass enhancement" with a Birads 4b assessment. I'm hoping it's benign or more DCIS. I actually have a slight cold right now but I don't know if it's actually a cold or the result of the effusion. My anxiety has me spiraling and my mind is taking me to some dark places. Thanks again for the post. I need to have some hope for a positive outcome.
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First, big hugs to you. Second, take a deep breath. You are getting way ahead of yourself. So far, the only diagnosis you have is DCIS- this is Stage 0. The results of the next biopsy may very well be benign. I had two breast cancer tumors diagnosed via ultrasound guided biopsy. A third spot was seen on MRI and I had an MRI guided biopsy. It was benign PASH. MRIs see lots of "suspicious" stuff that is not cancer.
Even if the biopsy comes back cancerous, it is within your breast which is not Stage 4.
While the pleural effusion could mean cancer, it is also a common symptom of a respiratory infection. Even if, for the sake of argument, you have Stage 4 breast cancer, you almost certainly have more than "months" to live. Probably years, and maybe many years.
But that is pretty unlikely. The process of diagnosis, and all the tests and uncertainty, is the worst part. Gathering all the information needed to develop a treatment plan takes longer than any of us would like, but breast cancer is almost never an emergency.
I well remember all the fear, anxiety, and insomnia. You will feel much better once your treatment plan is in place.
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We're so sorry you find yourself here, @loveislove, we know this is all very scary and overwhelming. The fear and anxiety during the diagnostic process can be incredibly difficult to manage - there's so much you don't know yet, and the unknowns are scary! If you don't already have a therapist or mental health professional who helps you manage your depression and anxiety, please don't hesitate to ask your doctor for a referral. It's so important to keep your mental health a priority, it can be so helpful as you continue down this road with treatment once you have all the information about your diagnosis.
Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.
We're all here for you - you are not alone!
The Mods
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Thank you for this message. I read it and tried to put things in perspective. I was actually able to get several hours of sleep. Here's the thing:
I've had consults with two surgeons thus far. I asked one of them, what are the chances of the MRI coming back showing Stage 4? She said even though I'm stage 0 right now, they wouldn't know if I'm stage 4 bc they are only looking at the breasts. I'd have to check other organs to see if I'm stage 4. I was confused by this initially bc how can I be told I'm stage 0 while you're also saying I could be stage 4? I think I understand now what she means.
When I mentioned, "months to live" it was in reference to MPE - malignant pleural effusion. Goog shows the statistics and the mortality rates. This is what has me spiraling and on the brink of a nervous breakdown.
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what I’ve learned through this process is that the Stages are best educated guesses by the oncologist and doctors. It seems that after you have surgery and pathology reviews the tissue then they have a more definitive idea. The MRI and PET scans help give more clues but it’s not 100%. I have been at stage 2, then 3, then 1 then who knows what’s next in the reports. I may go back to a different stage if they find more cancerous cells. I just had surgery and we will see what pathology says. So I realized I had to lean into this uncertainty and just try to handle it one day at a time. I hope this is a little helpful.
you’ve got this! and you are in a supportive place here.0 -
loveislove,
This is an anxiety provoking time as we know. Here are two things to remember:
- Dr. Google is good for general information but cannot diagnose anyone! As you have learned pleural effusions can have multiple causes, resolutions, and outcomes but that says absolutely nothing about you!
- Stage IV de novo (at first diagnosis) is rare and unlikely to happen. Your diagnosis is stage 0, which means your cancer has not even invaded your breast tissue as it is in situ means it is contained within the duct. I never say never but this should give you additional comfort as it makes metastasis virtually unheard of.
We understand fears and anxiety. The greatest help with that is learning the facts about your situation and stay away from Dr. Google. Take care
1 - Dr. Google is good for general information but cannot diagnose anyone! As you have learned pleural effusions can have multiple causes, resolutions, and outcomes but that says absolutely nothing about you!
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Thank you for the replies and encouragement. I keep reading them over and over because they are helping me to hold it together mentally. I appreciate you all.
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Loveislove,
I am sorry for what you are going through. I just finished surgery for my 2nd breast cancer, IDC stage 1, (1st one was 15 years ago) I sure remember the anxiety. And I also tend to do too much googling and get too far ahead, and too much IN my head. The medical field is so advanced these days and they have so many excellent treatments, you have so far to go before you need to have such big worries. It might be helpful to take some walks, get some exercise and begin a mantra about trusting your providers who have many many tools, much training, and deal with these things all day, every day. You can take it one day, or one hour at a time. Take a deep breath, we will get through it together.
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Thanks Rosiesu. I wish you fast healing and good health. Thanks for taking the time to offer some encouragement. My health anxiety and OCD has affected me for many years. I finally got on a med not long ago. I thought it was helping, but all of this imaging, biopsy, results, more imaging needed, incidental findings, etc has triggered the worse and has me spiraling. I was coming to terms with the beast stuff, but the liver and pleural effusion stuff has me in a very dark place. I sent the report to my liver specialist and she said it's most likely benign, but who knows. I have an appt tomorrow to discuss it. I'm trying to get an appt with a pulmonologist. I have another consult with a breast surgeon tomorow. I'm waiting to hear back for an emergency psych appt. This is so overwhelming. I'm breaking down and trying to hold it together.
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Hi @loveislove, A new diagnosis and indeterminate incidental findings can upset the apple cart when you are dealing with health anxiety. I'm glad you have upcoming doctor appointments and others in the works so that you can get answers to allay your fears. Hang in there; this is a place to vent if it makes you feel better. Virtual hugs for you.
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Hi all. Here is an update. I had a biopsy of two additional areas in the left breast and one came back as more DCIS. Instead of 6mm of DCIS, we are now talking about 7cm. My surgeon is willing to "try" a lumpectomy but I'll need plastics involved.
I had a chest xray which came back normal. Spoke to an interventional pulmonologist about the pleural effusion and she has ordered a CT scan. She said it probably wouldn't show on the chest xray (it didn't) bc it's small.
I had an mri of the liver this past week for the incidental lesions finding that showed on the breast MRI. There is also a finding of trace bilateral effusions, and it says this…
Impression:
- No suspicious hepatic lesion, multiple cysts
- Barely appreciable subcentimeter perihepatic nodule between the anterior liver margin and abdominal wall possibly represents a lymph node. **same thing said on Breast MRI**
Suggest CT of the abdomen and/or PET/CT for further assessment. Correlation with any outside imaging would be beneficial.
I can't talk to my GI doc til next week and I'm super scared yet again. Is a CT suggested to check if the lymph node/mass is malignant? Breast MRI said small right sided pleural effusion and now this most recent liver mri says trace bilateral effusions in the chest. Is this more worrisome? I haven't had an appetite for two days and can't sleep.
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Hi @loveislove, I’m glad your surgeon thinks a lumpectomy is possible if that is the surgery you would prefer. A chest CT is the gold standard for visually evaluating lungs so getting that will be helpful. The liver MRI couldn’t classify the nodule so a CT was suggested to get a better look at it.
Unless it is widespread or large imaging can’t determine whether something is cancer (and even obvious lesions are tested.) Different types of imaging provide different information and doctors use it all to decide if there is enough evidence for ordering a biopsy. Often if something is small or indeterminate doctors follow it with imaging to see if it grows or starts to look more like cancer.
I have no experience with the liver but I have regular imaging following suspicious lesions in my lungs, thyroid, esophagus, adrenal glands and hip. While some organs are easy to biopsy (thyroid, esophagus) others can be more difficult and damaging (lung, hip acetabulum.) Doctors need a higher probability of a serous problem before trying to get a sample. My acetabulum has a good sized tumor that looks like a met on MRIs but ortho oncs recommended following it for growth since there is a high probability that a biopsy would damage the hip irreparably leaving me unable to walk. I trust my medical team and have learned to live with the uncertainty.
The words "trace" and "barely appreciable" suggest small and no invasive cancer has been found yet. Definitely follow up with the radiology recommendations. You can take copies of your imaging elsewhere for a second opinion if you feel you need to.
It's an unsettling situation to be in but sometimes there are no straightforward answers. Hopefully your doctors will reach a conclusion after all the imaging is completed. In the meantime try my technique of telling yourself that worry won't change the outcome so let it go and live your life. (((Hugs.)))
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Thank you for the reply. I really appreciate it.
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i agree with so many of these posts. It is nearly never as bad as we think. Dr. Google is deep and dark with results we almost never have. If we do have treatment ahead, there are so many. Cancer treatment has gotten so much better. I did my best to ask the DR questions- What, why for all treatments. If I still had questions, I went in the hospital portal and asked my questions. Our own minds are dangerous!!! I had breast cancer, then this past April I had a bone marrow transplant. I found i can walk through anything. The only time i checked google was after i was given treatments. A friend then told me about bc.org and here is where i found people who walked through treatments like i did.
Treat yourself with kids gloves loveislove……… we understand fear and uncertainty, but we can help you find hope.
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Hi all. First, I want to thank everyone who took time out of their day to respond to my posts. I appreciate you all for the support and compassion you showed me. Here's an update in case anyone finds themselves in a similar situation and comes across this thread.
Liver imaging came back fine - benign cysts
Small right sided pleural effusion on breast MRI turned into trace pleural effusions on further imaging. I just had a CT scan of the chest and pulmonologist said it's normal. She said the fluid is gone and probably was the result of a viral illness.
My DCIS spans 7cm (non-mass) in the 7-8 o' clock area. I'm scheduled for a lumpectomy this week and will pray for clear margins bc I do not want to have a mastectomy. If margins are clear, I'll have a reduction/lift two weeks later. Ideally, I wouldn't have any reconstruction if we are just talking about one boob being a lil lopsided than the other, but I'm told I will need it.
This is my first surgery and I'm scared - scared of margins not coming back clear... scared of being cut open/incisions... scared of looking at myself and seeing a deformity, etc.
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Hii loveislove,
Good news that the liver lesions were benign cysts and the pleural effusion has cleared up..
Surgery isn’t fun but it is doable. My first surgery was in an emergency so I didn’t have any time to worry about it. My lumpectomy was much easier. I only needed pain meds for a couple of days and was back to work five days later. Your body will look a bit different but you’ll adjust over time. The reduction/lift on your other breast will help you look more symmetrical. Scars fade eventually and your body will have a new normal.
I hope your surgery goes well and the margins are clear.
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Hi all. I just want to give an update for anyone who may come across this post. I had my lumpectomy last month and margins came back clear. I had a reduction and lift two weeks after the lumpectomy. I actually left a message to cancel the reduction/lift the day before the procedure. I didn't want to deal with a second surgery and while the first few days were a bit rough, I'm glad I went through with it.
I will have my simulation session this week for radiation therapy. I will have a total of twenty radiation treatments including boosts starting the end of this month. I will meet with a medical oncologist this week to discuss hormone blockers since I'm ER/ PR positive. Best wishes to everyone!
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Hi loveislove,
I’m glad you are happy with the results of your surgery. It’s never easy but you do recover. I hope radiation goes well and you have a good appointment with the MO. Many people wait to start hormone therapy until after radiation to isolate any possible symptoms. Thanks for letting us know how you are doing.
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