Newly diagnosed, sort of
Hi - I’m new here, 56 years old, terrified and frustrated with the long timeline for my diagnosis. Since my mammogram on Nov 22, 2024, I’ve been sinking deeply into paralyzing despair with each new waiting period followed by a new piece of bad news. (1) calcifications on right breast mammogram, (2) magnified mammogram shows same, so I need a biopsy, (3) mammogram- guided biopsy, with my back arched in prone position, (4) high grade DCIS diagnosis, (5) surgeon says lumpectomy/radiation, (6) 2nd opinion surgeon agrees and orders pre surgical MRI, (7) prone again for breast MRI, (8) bad news on Dec. 26: maybe need mastectomy because 2 additional masses and large non-mass enhancements, so need more biopsies and ultrasound, (9) ultrasound today correlates with MRI for the masses, (10) biopsy scheduled for Jan 10, 2025, but it’s not the kind of biopsy my surgeon wanted. He wanted MRI-guided, but this is ultrasound-guided and can’t elucidate all that’s needed. No appointments available for the desired biopsy until late Feb 2025.
I cry every day not knowing if I’ll lose a breast and/or if these masses are invasive. I have barely slept since November. I don’t know how am I going to endure another 8 days until my second-rate biopsy occurs and then subsequent waiting for results. I got very lucky with a quick pre surgical MRI appointment because someone cancelled. Otherwise it would have been scheduled for July 2025! Seems like a third world country, but it’s actually Philadelphia.
How have you all been able to cope during the whirlwind of questions begetting more questions with respect to attaining a treatment plan? Thanks for “listening”.
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@tr8tsid, welcome to the BCO community! We’re so sorry you’re going through this. It sounds incredibly overwhelming, and the waiting is truly one of the hardest parts. Please know that many of our members have gone through similar situations, so there are people here who truly understand what you’re feeling. We’re here for you and ready to listen whenever you need to talk. Try to take things one moment at a time, though we know that’s much easier said than done.
Looking forward to hearing more from you,
Sincerely,
The Mods
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Hi @tr8tsid, I'm sorry that you have to join us here because of your biopsy result. Unfortunately imaging, even MRI, has limitations. For a variety of reasons there is no perfect noninvasive way to see exctly what is under the skin. Even biopsies which sample cells are not completely accurate since they test only a small part of the suspicious tissue.
The postsurgical pathology is sometimes different from what the biopsy predicts and is what determines your treatment plan. I started out with a diagnosis of 1.6 cm DCIS and clear nodes by ultrasound and ended up with a 3.2 cm IDC tumor with a small amount of DCIS and one positive lymph node. The breast surgeon was suspicious that the presurgery imaging was inaccurate. I signed off on lumpectomy, sentinel node biopsy, axillary lymph node disection and skin sparing mastectomy which allowed the surgeon to perform the least invasive procedure possible without leaving cancer behind. She did an oncoplastic lumpectomy and SNB which gave a good cosmetic outcome. I didn't need chemo, something that is often determined after surgery. I found out from the pathology report the imaging was very inaccurate because I had numerous radial scars which hide tumors.
If there is cancer in different parts of the breast it is sometimes not possible to get a good cosmetic result from a lumpectomy which is why you need further testing. Also, radiation is often not needed after a mastectomy which gives you more options for reconstruction if that is your preference. I had no idea that breast cancer and its treatment is so complex so I understand your anxiety. When your surgical pathology and post surgery testing is completed you will have a treatment plan which makes going forward much easier. The roller coaster ride is not fun but is something most of us here have survived. All the best.
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“ I had no idea that breast cancer and its treatment is so complex so I understand your anxiety. “ - Maggie15
Word! It was almost shocking to learn how varied and complicated breast cancer can be, and how much we still don’t know as well as the fact there seem to be so many gray areas. I certainly think that most people, myself included, have a very simple notion of what bc is. 13 plus years later and I’m still regularly surprised by its complexity.
The waiting and the uncertainty are dreadful but try not to go down paths you may never need to travel and focus on what you know right now , avoiding speculation if possible. We understand that it is very difficult to control the worry and going to dark places as almost all of us have been there. Take care
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Thank you all. You’ve made me feel better. I’ve never been good at waiting around doing nothing; I tend to always dive in and try to fix whatever is broken, and I certainly can’t do that in this situation. Trying to keep myself maximally distracted by cooking new recipes, etc.
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hi. I’m at a real low. Today was 2nd and 3rd biopsy day to determine if I can still have a lumpectomy or if I need a mastectomy, which is highly highly likely. I found out that I’m not a candidate for NSM (nipple sparing mastectomy). I found out that they won’t be doing immediate DIEP flap reconstruction (assuming the mastectomy is needed), so I’ll have a tissue expander for a while until I heal from the mastectomy a bit. [Aside: The old style of having immediate autologous DIEP flap reconstruction is more stressful on tissues and has worse recovery, etc. so they apparently they no longer do that at Penn Medicine where I’ll be treated.] I’m mentally unprepared for all of this and had hoped to have a one-and-done surgery, whatever it may be. I don’t know how you all are so strong, especially considering that my experience is far less intense than what many of you have dealt with. I just don’t think I can go through all of this. I cannot handle this. I’m not going to be able to do this. Surgery is scheduled, but I don’t want to go through with it. I can’t.
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tr8tsid,
Sorry to hear that you are feeling overwhelmed. It’s understandable to feel that way right now. Seems like things are moving slowly and choices are being taken away from you because of things that you can’t control. Allow yourself time to process your emotions. This is the hardest part. You will find the strength to carry on. 💕
I had mastectomy, tissue expanders and eventually DIEP.
Please reach out if you have any questions.0 -
Hi @tr8tsid, I’m sorry that you couldn’t have the lumpectomy you preferred. A one-and-done surgery is definitely more convenient but the important thing is that you have a good outcome. While I can’t give you advice on DIEP flap reconstruction after tissue expander there are many ladies here who have had that surgery who can answer your questions and support you. If you are really opposed to more than one surgery a flat aesthetic closure is a possibility.
It’s an adjustment when you are used to being a take-charge person and then find that choices you expected to have aren’t there. It’s not so much that we are strong but more that we underwent the treatments prescribed for us to prolong our lives. I breezed through surgery but had serious complications from radiation. My life is quite different now since I have compromised lung function but I am still here. It’s surprising what you can deal with when you have to. It’s also fine to complain since we understand. All of us miss our pre breast cancer lives. You will get through this like the rest of us. Hugs for you.
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@tr8tsid no matter what treatments, procedures, medications ,etc you have to do - the bc journey is intense and emotional. Even once you are finished it is emotional. Please know that all these emotions you are feeling are completely normal. It is a lot to process. Some days I was fine emotionally, other days were much harder. This site was so helpful for telling me really truly what to expect during my chemo, mastectomy and radiation.
I think we have all felt overwhelmed during our journey. Those feelings are very normal.
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Hi @tr8tsid. I can really relate to what you’re saying. How you are feeling is a normal response to such an abnormal situation. Nothing prepares us for this! These are almost impossible decisions too. I had a lot of private meltdowns in the beginning, hating having to make these decisions. Hating all my options.
As @maggie15 said “It’s surprising what you can deal with when you have to.” Those words are so true!! You’ll see. As the seriousness of breast cancer becomes real to us (once we get our diagnosis and start to understand it all) we find ourselves being able to do things we never imagined we could. I also never felt particularly strong and I had to give myself a lot of internal pep talks to force myself to go through with all of this but I knew at the end of the day that I didn’t really have a choice (since mine was already known to be invasive, if I didn’t deal with it, I knew it would eventually kill me and I definitely didn’t like that option).
I’ll admit that having multiple surgeries is not convenient, and takes time, money and lots of energy to heal … it is a major disruption of our lives … but now that I’m through it, I am content with my outcome. It’s not perfect by any means, but it’s okay. You really will be able to do this. If you find out you don’t need a mastectomy and they allow you to have a lumpectomy, that’s great. But if you need a mastectomy, you WILL be able to do this. It’s not fun, but you can do it!
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I’m really surprised to hear Penn won’t do immediate DIEP recon- I had that 4 1/2 years ago at 62 at Columbia Presbyterian in NYC and specifically chose that for many reasons psychological and physical including that my body doesn’t tolerate foreign objects well. Is Penn your only option? It may be worth checking into other institutions.
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Ladies, thank you for all of the support. I’m trying to soak up every word you’ve written. The anxiety is becoming too much for me— constant chest pain. On the same day as all kinds of bad news I described above, my genetic testing of 48 genes (such as BRCA1/2, etc.) was completed. 47 of them are fine, but I have a DDX41 mutation which predisposes me to leukemia. I always knew this was the case, in my soul. My mom, her mom, my mom’s uncle (maternal), and one of their uncles all died of either diagnosed leukemia or “some kind of blood problem”. Now I have to get a hematologist and go down this new path. I will eventually need to tell my beautiful son (23y) and all of my siblings that they have a 50/50 chance of having this autosomal dominant mutation. I am imploding. My primary care physician prescribed an anti anxiety med, but I think it’s time to see her about my chest pain, which I think is probably anxiety or depression, whatever.
abigailj- Great idea. I’ve strongly considered Sloan Kettering. It’s actually a shorter and easier drive for me anyway and they’re in-network for my insurance. Penn Medicine is already my second opinion place. I don’t know how much insurance companies let you shop around endlessly. I have a suspicion that Penn won’t do the procedure all at once due to complexities of scheduling multiple doctors together and wanting to avoid long surgeries. I have no evidence. But I’m not sure I’m buying their rationale. My “ideal” surgery would entail 3 big components (mastectomy, DIEP flap using up everything I’ve got abdominally, and major breast reduction on my good side.) which would, indeed, be a very long surgery and intense recovery.
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Insurance will generally pay for a third opinion if your second opinion is different from the first. Most surgeons will not operate for longer than six to seven hours since the risk of complications goes up after that. Scheduling does play a role in this as well. I’m waiting six months for surgery (not for cancer) that involves two surgeons and two pieces of specialized equipment. You do have a malignant tumor that will continue to grow and needs to be removed soon. By doing that first and reconstruction which requires in demand equipment later the cancer will be out of your body sooner. Even large hospitals have a limited number of operating rooms and while emergencies trump cancer surgery cosmetic surgery is much lower on the triage algorithm.
I’m sorry that your genetic testing found a gene that predisposes you to leukemia but it is better to have doctors looking out for this so that if anything happens it can be dealt with early. It’s good that your PCP has prescribed something for anxiety. Dealing with all of this is not easy. I hope everything works out well.
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maggie15, Your responses are always so helpful and sage. Each time I read what you’ve written, I feel like I’m having a consultation with an oncologist and a psychologist simultaneously. I do want the cancer out of me as soon as possible, so that’s where I’m going to focus my energy. I catch myself getting worked up about the wrong topics, allowing them to derail me and drain my precious wits. Example: every time I hear/read the term “simple mastectomy“, it instantly makes my blood boil. Simple? Are they insane? That’s a cruel thing to say. It’s devoid of empathy, it’s flippant and heartless. All the while I’m angry, I do entirely comprehend that it’s a descriptive term from a surgical point of view in direct comparison to the radical mastectomies that so many lovely women needed to endure throughout history. I know it’s vastly better and that we’re all benefiting from major improvements. If I want to lobby the world to get the term changed, I should put it on my to-do list for later. I’m trying to walk in the present. Trying hard but often failing. I’ll keep trying. Thank you so very much.
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Well, the pivotal biopsy has been partially analyzed, and one decision is clear: I need a mastectomy. I have an “invasive poorly differentiated ductal carcinoma with necrosis”. This is in addition to another area previously diagnosed with DCIS in December 2024. They want to do chemo also, but I need to consult with a hematologist / oncologist first since I have the DDX41 mutation which predisposes me to leukemia (AML). I would choose a recurring breast cancer over AML every day of the week, so they’re going to have to twist my arm to get me to agree to chemotherapy. We’ll see.
Just having clarity (to a large degree) is some relief, even though it’s a bad outcome. I don’t know anything about ER PR or HER2, etc. yet on this new mass. The first cancer was ER-/PR-. HER2 wasn’t tested.
Surprisingly, the new cancerous area wasn’t even scheduled to be biopsied. A different lesion was chosen by some radiologist (who interpreted my MRI) to be biopsied. I pushed real hard to get this other lesion biopsied too, and everyone said no, but one doctor finally agreed. Lo and behold, that’s the lesion that was cancerous. The radiologist-selected mass was benign. If I hadn’t been my own STRONG patient advocate, this new cancer would have been missed entirely. You have to be your own doctor. Conveniently for me, I happen to have a bit of medical knowledge, but I’m not actually a doctor.0 -
I’m glad you advocated for yourself and got both suspicious areas biopsied but I’m sorry about your diagnosis. Unfortunately the necrosis implies the IDC is aggressive. You don’t have all your hormone markers yet but based on the original biopsy it is likely that the tumor is either triple negative or HER2+. Both of these profiles require chemo to destroy the cancer before it can spread to other parts of your body. Recurrence can be local or distant. I understand that you are worried about the mutation that predisposes you to AML but you need to treat the cancer that is real rather than a future hypothetical one.
When you get the rest of the biopsy pathology the oncologist will come up with a plan. Chemo is not fun but is doable. Whatever the treatment turns out to be there are others on this forum who have gone through or are currently undergoing the same thing and can offer you information and support. You will be able to do whatever treatment is necessary and we’ll always be here as a sounding board. Hugs for you.
Maggie
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Thank you Maggie, I hereby accept all hugs gratefully! I understand what you are saying about real vs hypothetical. I WILL undergo the mastectomy to remove the real cancer. But the possibility of recurrence at the surgical area or a distant site is a hypothetical. The surgery in principle should remove all cancer if lymph nodes are clean. Agreeing to chemotherapy addresses the hypothetical return … while denying chemotherapy avoids the hypothetical creation of a new cancer (MDS/AML). To me, it may not be real vs. hypothetical. It’s more like hypothetical vs. hypothetical. I feel like I’m facing an impossible decision. I wonder if I’m the first person who has a DDX41 mutation to face this decision. Where are the best minds in the world on this matter? I cannot find any instance of this in the scientific literature. I usually rely on only NCBI articles to inform my medical thinking and decisions. As far as I can tell, the lifetime risk of acquiring a MDS (myelodysplastic syndrome) and/or subsequent leukemia due to this DDX41 germline mutation is anywhere from 8.55% to 50%. And that’s “unaided” by assaults like chemo. Having chemo increases the odds of getting leukemia to… I don’t know what %. Call it x, but it’s certainly an increase. And so I wonder, is my probability of having recurring breast cancer if I forego chemo greater than 8.55%-50% + x or times x? I believe I should choose the route with the lowest probability of disastrous results. Breast cancer is awful, but this leukemia is horrific with very low survival at 5 years.
Pathology status update: I’m not triple negative. It’s HER2+.Hematology and oncology update: just the sound of crickets. Nobody has contacted me yet.
I’m going insane. I’ve never been under such stress before. I’m trying real hard to remain lucid and logical. Like Spock. Or Lilith Sternin.
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Hi @tr8tsid, Not that any of this is good news but HER2+ has very effective treatments and a high survival rate if the protocols are followed. There are not any recent statistics available since very few refuse treatment but a 2009 paper which looks at data before 2006 when the targeted therapy herceptin was approved for early stage bc gives a 5 year survival rate of 68% for chemo alone vs 96% for chemo with herceptin, quite a difference.
There are some clinical trials looking at HER2+ early stage bc recurrence using herceptin with limited chemo that you might want to investigate.
The trouble with recurrent bc is that it can metastasize, spread to your other organs rather than simply reappear in the breast area, so the average survival times of MDS/AML and HER2+ MBC are about the same. After surgical pathology your MO can often give you breast cancer recurrence probability numbers for having vs declining a treatment.
It's hard when there are competing priorities. Also, there is no data available since the number of people in the same circumstances is very small. There is someone who posts on this site who currently has smoldering MM (previously active) and has mentioned that chemo for BC did worsen her blood cancer status. Given the prevalence of breast cancer and blood cancers you can probably find others in similar situations. Check the blood cancer forums as well as this one.
I'm at high risk for esophageal cancer and the radiation I had caused early dysplasia for which I had radiofrequency ablation to destroy the rogue cells. It's a balancing act and in my experience you have to be monitored for the development of the competing cancer. You also have to go forward without data or the advice of other people in the same situation. In addition I ended out with radiation induced progressive pulmonary fibrosis and found only 9 other people on an international PF forum, 5 of whom are still surviving, in the same situation. The treatment I use to control my cough was proposed as a way of slowing progression in two clinical trials (Mexico and China) which never happened due to insufficient numbers. I'm hoping that if two different research groups thought this was a good idea they were right. These things along with other problems caused by radiation have me flying blind but I'm still flying and have come to terms with not having data driven answers. What happened to me has a 1/10,000 chance of occuring and I would never recommend skipping rads to anyone unless they had red flags like I did (unbeknownst to me.) No matter what the statistics say there is no certainty in the cancer world.
I can't offer the "right" advice on how to get to this acceptance stage but most people with serious illnesses eventually do. I was shocked when told to get my affairs in order since my survival was uncertain. When my pulmonologist called 5 months later and told me he now thought I would see my next birthday I decided then and there that I would stop worrying since each new day was a gift I had not been promised. Find out what you can about your illnesses and treatments, make a decision accepting that it might have adverse consequences but seems best at the time, and fully live every single day that you have.
Hopefully you'll hear from the doctors soon but if not contact them or their advanced providers yourself. NPs and PAs are much more available to patients and have daily contact with the physicians. Penn is a good hospital since you can be internally referred to other specialists as needed. I already had a gastroenterologist but have now acquired a pulmonologist, thyroid surgeon, ENT, orthopedic oncologist and pain management MD. They can access all scans and notes as well as pick up the phone to talk to each other. Maybe you can find a MO like mine who treats both breast and blood cancers. My former MO left for another job and by chance I was reassigned to this one.
It's a steep learning curve but you are up to it. Find out all that you can and ask yourself the question "Would I regret my decision if not doing this treatment caused stage 4 breast cancer to develop?" to help you decide. Hang in there and keep in touch.
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Dear Maggie, Thank you for this so very thoughtful and generous sharing of your experiences. You’re the strongest person I can imagine. Your description of how you have reached acceptance and how to live each day as a gift is awe-inspiring. I’ve described your words as “sage” previously, and now they’re uber-sage. The HER2 information is most encouraging. Very hopeful. I’m benefiting from being at a large research hospital for the reason you described about access to experts and their ease of communication. I have an appt. Jan 24 with a hematologist/ MO who is very experienced and has already been reading my chart and having conversations with my genetic counselor who said he’s really confident that things will go well due to the fact that my HER2+ data is so favorable. You certainly know this, but there are cutoffs for signal levels when assigning +/- to HER2, etc. in the pathology report. My levels are ragingly high (my words), which is great from a therapeutic perspective (but really scary to me).
I’ve visited some blood cancer forums to look for other people like me. Nothing found yet; I need to broaden my search across multiple types, such as MM, which I hadn’t thought of doing.
Hugs to you too.
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