The MFing Waiting Game
Hello from Philly...
Happy to have found this forum. I apologize ahead of time for any profanities (again, I'm from Philly).
35 y/o son here. 65 y/o mom was diagnosed with breast cancer on 1/13. The initial conversation was a blur, and new tidbits of information has been trickling in over the past few weeks. Here's what we know right now:
- Biopsy and imaging confirmed ~2cm tumor in left breast. ER+/PR+, HR-. No nodes enlarged or lighting up.
- Biopsy and imaging confirmed DCIS in right breast (unknown size). Unknown hormone profile etc.
- CT scan showed thickening in endometrium and several nodules in lungs (all but one nodule <5mm). The radiologist and surgeon said these are common findings and they are not concerned / not to worry. Yeah, BULLSHIT. I'm worried! Really fucking worried! Has anybody else dealt with benign lung nodules?
- We have a PET scan and second opinion set up for this week. Should have a plan for surgery and scope of additional tx after that.
OK. That's what we know from a medical perspective.
From a personal perspective, this period of waiting for final staging / diagnosis may literally kill my father. My father and brother are both very successful physicians. I am a senior attorney for a major pharmaceutical company that just so happens to be prominent in the breast cancer space. We know the seriousness of the diagnosis - and, in many ways, the level of hope and advancement that's been made in this area. We feel like we're teetering between a "close call" favorable diagnosis and a very, very, very tough fight...
Of course, the most important thing here is my mom's mental and physical well being... so we're doing our best to be positive and maintain "normal" as much as possible. IT WOULD HELP IF WE COULD FIND A FUCKING COVID VACCINE APPOINTMENT.
It already feels therapeutic putting this into writing.
Looking forward to hearing back from / engaging with you all.
Comments
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Hi!
I know all this stressful, but I'd say that your Mom's situation may not be as dire as you think. Lots and lots of women here have come across benign lung nodules, and yep, they are benign. Heck, my husband was a smoker for several years (until I convinced him to quit), and his pulmonologist found benign tumors on his lung. (He was being treated for blood clots in his lungs.)
The thickening of the endometrium -- lots of women experience this after menopause. In some cases, it might indicate endometrial cancer down the road but I'm not sure what this has to do with breast cancer at this point.
I'm glad, however, that your Mom has asked for a second opinion if it will give all of you peace of mind. The PET scan? Overall, it's not a bad idea, but it can produce false positives. I've had three PET scans and they all indicated that something was going on in my left femoral neck (hip). But, my oncologist couldn't find anything with a CT scan or MRI and she declared it a false positive.
((Hugs)) Patience is a virtue.
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I am so sorry for your mom’s diagnosis. The time right after diagnosis is very much the most stressful part as you wait for all the information that you need for a treatment plan. I just wanted to say that benign lung nodules are absolutely a thing and hopefully that’s what your mom is looking at. You sound like me-a pretty intense, Type A, problem-solver-and the uncertainty is obviously very difficult for you. I am going to give you some advice that I thought was crazy which is don’t cross bridges until you come to them. What you know now is that your mom has a serious but treatable diagnosis. Focus on the treatable and I promise it gets easier when you have a plan.
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Ted, you've received good responses about the diagnosis. So I have questions and comments that relate to with your mother's mental well-being.
Who is running the show? With two doctors and yourself involved as family members, has your mother handed decision-making over to the 3 of you, or is she the primary decision maker? If your mother is happy to have others in the driver's seat, that's fine. But if she is a strong capable woman, you and your father & brother's efforts to do "our best to be positive and maintain "normal" as much as possible" might not be helping at all. As someone who is about your mother's age, I can tell you that I would banish any family member who tried to take control of my decisions on a matter as serious as a cancer diagnosis. And I would be furious at anyone who humoured me or treated me like I didn't know what was going on.
I may be reading more into this than is there, but as someone who has been on this site for a long time, your comment, "We have a PET scan and second opinion set up for this week" raises a red flag. The only person who has a PET scan this week is your mother, and she is getting a second opinion on her diagnosis. Your father or you or your brother may be accompanying her, but that is a supporting role. Does your mother know that you are posting here about her situation?
If you care about your mother's mental well-being, you have to remember that she is the one with cancer, she gets to make the decisions, and your role & involvement is dictated by her. If she has willingly and happily chosen to hand responsibility over to you, your father and your brother, that's fine. But if not, you may need to step back on your involvement or adjust your approach - for her sake. Many of us can tell you from experience that it's hard enough to deal with a cancer diagnosis without also having to manage family dynamics.
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ted,
I am just a few years older than your mom and I went through a similar diagnosis. Would you mind me asking what type of medicine your dad & brother practice? I also have adult children one of whom is a physician. My husband is also in healthcare as am I. This is all to set the stage that my family is very Type A as I think your family might be as well.
As the patient, let me tell you what I felt when I was first diagnosed. I not only knew what the diagnostic process was, I also knew in extreme detail what the NCCN protocols were for treatment. All that aside, what I needed from my family was calm support. I was able to take my husband to all my diagnostic procedures (pre-COVID) and he was there when I woke from surgery. Throughout the entire process, I did not need him to be my medical support. He was my emotional support. As we spoke about my diagnosis & choosing treatment options, he did not offer hysteria, belligerence nor judgement about what I was offered or what I chose. That is not to say we did not have deep emotional conversations. But, they did not involve our children. I was at the time and still am able to make my own decisions about what choices I make.
I say all this to suggest you try to dial down the emotion. I know you love your mother beyond all measure and want what is the very best for her. Likewise, your Dad has enough experience to know this is a process. Your brother, likewise, as a physician knows this process takes time, careful weighing of options, knowledge of Oncotype scores & more diagnostic tests. You & your brother will need to act as supportive characters for your Mom & Dad. As parents, we have long talked about what would happen ..... if. Well, perhaps if is right now. Your Mom & Dad need to work through this and your job is to be supportive of what they choose.
Breast cancer is no joke but it is not an imminent death sentence. If you spend any time reading on this forum, you will find many many women and men who are living with Stage IV diagnoses for many years. In between that and your mother's diagnosis, there are thousands of women like me who live in Stages much lower than IV. We have no idea if our cancer will metastasize some time in the future. Most of us would like our family to be supportive, calm, able to listen, and be able to tell us you love us no matter what.
Your parents will be fine. I hope you find support for trying to understand your mom's diagnosis. Read here, ask questions here, find out resources so you can know what the current approaches are for each stage of breast cancer. Most of all, slow down. Love your Mom & don't hesitate to tell her. Help both your Mom & Dad with whatever might be needed around the house. Don't worry about the COVID vaccine. She is not immunosuppressed so she likely is as capable as you to stay healthy. Mask, wash hands and let the process take place.
We are here for whatever you might need. Stay well & take care,
Jane
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What Beesie and jhl said. MY husband's involvement was to be a second pair of ears for me, because his job has trained him to pick up details more than I do. And if he tried to speak for me at doctor's appointments, he got a sharp fast elbow in the gut, on the spot. If my grown son had been there and tried to speak for me, it would have gotten ugly pretty damn fast. I finally gave my hubby all the paperwork and bills from my appointments, tests, and surgery, and all my insurance correspondence, and told him his best help would be to handle all that. BTW, I was older than your mother by a few years.
I've always heard that doctors make the worst patients. They're probably worse when it's a family member. All of you need to back off unless your mother is incapacitated in some way.
About lung nodules - I've got 'em. My oncologist says nearly everybody collects lung crud in their lifetime, we just don't know about it until we get scans. All those doctors in your family should know that.
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Ted, you have already received some wonderful advice from the posters on this thread. I am glad you have reached out and found a place to vent your concerns and emotion here rather than share those intense feelings with your mother at this time. I personally didn't have the extra emotional energy upon diagnosis to deal with anyone else's concerns. I was also very independent about going to my doctors, deciding next steps and treatment plans. We are all different in our approaches, so ask your mother sincerely what she needs from you. It may be just space. Or a hug. Or she may want you to be more actively involved in discussions about medical decisions.
These are the worst days, when you don't have the full picture. Be prepared for an unexpected turn, but that doesn't always happen. I know the lung nodules are scary, but like many have said, not so uncommon, and they will roll that information into the treatment plan. I hope your dear mother likes her doctors, has trust that their approach is thorough, and that she gets a treatment plan very soon. I wish her and your family all the very best during this difficult time.
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Lung nodule that size usually point to lung crud - I have one and it is NOT a lung met. I DO however live in a city with high pollution and have lived along busy roads.
The lack of lymph node involvement (as it currently appears, at least before surgery) at this time is a great sign, along with the hormone positive tumor marker and small primary size. Surprised they were willing to do a PET with those figures and her age, but barring something coming completely out of left field this should be easily treatable and she will be up and at em in no time.
At the beginning when its all a whirlwind and its hard to comprehend the rug being ripped out from under you its difficult to find the level that everyone wants to participate at. I brought my partner to three appointments - the one when the told me it was cancer, the second when they told me it was terminal/no surgery, and the third for the first MO meeting. It wasn't the best way to help me, I was anxious having him there, he was angry at what seemed like everyone, and I found him to be more help emotionally at home. The family members want to help and want it to be fixed, for life to go back to what it was, but that can't be. As much as you want to help and take away the fear and pain from her, you can't, no matter what you do. This is her path to walk and she will have experiences and emotions that she may not want to share with you, and that should be respected.
Ask your mother how she does want to be supported - maybe she wants just your father at the MO discussions, or perhaps she needs your support after she has completed treatments. A lot of hospitals have great patient programs with activities and groups, that may be something she wishes to explore as well - to meet others "like her", having her experiences, more than likely her age.
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Hi, Ted,
I'm sorry that you (and your mom) find yourself here. I am going to say that I can perfectly understand your feelings. When I was first diagnosed, my son (who bore the brunt of my initial diagnosis at age 13) was absolutely devastated. That was in 2003, so a long time and far away from the drugs that we have available today.
I think it's great that your mom is getting a second look at all of her stuff. I am a great believer in second opinions. You all need to let that play out, and then follow the plan that makes the most sense to your mom. She will need everyone's support, but in the end, the decision has to be hers -- after all, it's her life, as others have stated.
Please write back and let us know what is going on. For now, just be there for your mom.
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I think it's over 5mm lung nodules that would perhaps be concerning,. The CT scan has a LungRads score just like the BiRads for breasts. Take a look at that score. These radiologists, in my experience, really know their stuff. If it's normal findings, it probably is.
I'm 45 miles outside of Philly, welcome! I totally get the language! Sorry you have to be here. A PET will tell you a lot as well. I hope all will be OK, and your Mom can get on with treatment.
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Thank you so much for the reply! I didn't get a copy of the CT scan results. They were conveyed verbally to my father - explained presence / size of nodules, said "we're not concerned / confident these aren't an issue / not a problem". They have a medical oncology and radiation therapy consults Wednesday morning, so perhaps we'll get the "scores" then?
I hope all will be OK too. Will provide an update when I have one.
Go Birds...
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hey welcome to the board. Can you convince your mother to join :P
so, based on your last post, here's a simple thing you can sort out before your next appointments: figure out how your mother can get physical copies of all reports. Get her a nice big binder and get ready to keep track of her own medical records..... some places have online portals, some places will give you things on paper, some places you have to argue with, others will just hand them over. Figure it out and get copies, esp if you're planning 2nd opinions but even if not, if your mother has her own records she can make sure that things are correct. (for 2nd opinion on scans you may need the actual digital images, but for your own records, the radiologist's written reports are enough).
My MO writes detailed appointment summaries after each consult. It's interesting to read to refresh the memory and get insight into what the MO thought was the most important part - which is often quite different than what the pt was focused on.
BCO also has partnered with an online portal to gather all the records if that's something that interests you https://community.breastcancer.org/forum/5/topics/...
but it's fine to do it yourself. some tips and reasons for keeping your own records are here https://community.breastcancer.org/forum/161/topic...
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I'm overwhelmed by the number and thoughtfulness of the responses.
To those who asked, my father is an infertility specialist and my brother is an anesthesiologist (thoracic surgeries and other major procedures). I wouldn't call us all Type A, just overbearing...
Truly, my brother and I are doing our very best to be supportive as / where needed. We are just feeling our way around the right approach to take here. The pandemic makes things even more difficult. How do I console my mother or father over the phone when they say "I thought we'd grow old together..." in a cracked voice? That said, I do see them about once a week since Dx, bringing over food / drink and hanging out outdoors...
For now, my mother and father will interact with her doctors. My brother and I will listen and provide input if asked.
I am looking forward to learning with you all on how to manage the physical and emotional effects of the disease.
I appreciate it more than you know...
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just breathe & remember that most early stage breast cancer is curable and there's no reason now to think you won't grow old together.
I know you guys are worried this isn't early stage but hang in there. Benign lung nodules are common. Mets spread to lungs usually looks quite different - when I saw my lung met even I could tell was problematic and I suck at reading scans. Also, I think it's been mentioned before but be ready for the PET to cause more anxiety as they're kind of notorious for false positives. Current NCCN guidelines do not recommend using PET for early stage pts in absence of clinical signs of spread.
Do you want the stats for early stage dx? If you have the grade of the tumor you can enter it in the online evidence based calculator Predict and see how things play out for the avg pt with the same dx. https://breast.predict.nhs.uk/tool
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You're welcome Ted. Great people here, just popping back in to say that I am with Penn Medicine, and with you being in the city, whether there or wherever, there's lots of good choices being in the city.
I use the portal, as moth has suggested although I did get lots of info and a binder at first. They have recently added the actual images to the reports. I live and die by that portal now. Stalk it waiting for results.
Please do keep up with your weekly visits and all, as the distraction will certainly help your mom. Check my dates, I was diagnosed going into the playoffs of 52! All my friends came here for the game, and I was recovered from surgery and on the Parkway that Feb. morning. It was glorious!
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I live in Philly, my parents live just outside Philly in the burbs. My mom's second opinion is with Penn Medicine. I like what I'm reading about the team.
She is currently with Main Line Health. The non-stop imaging for a ~2cm tumor (and potential false positives / stress) has been frustrating. Not sure if Penn would have proceeded differently, but I'm excited to hear how my parents feel after their consult on Thursday.
Crazy timing for the diagnosis. I live in Fairmount, so that was like a month of not being sober.
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ted,
My I offer my perspective? Of course your concerns are completely normal! What you know thus far is not unfavorable and the unknowns are still... unknown.
I was dx’ed almost 10 years ago with stage IV. I was not in a battle for my life (sorry, I hate “war” terms. The implication is that it is up to the patient to fight and if cancer wins, they didn’t fight hard enough. Ugh!). I had surgery, radiation to the bone, and swallow an aromatase inhibitor daily. I will be retiring soon, but have taught elementary school full time since dx. I had no grandchildren when this began and now I have three!
I am clearly an outlier but each year there are more and more of us. If your mother does end up in a more difficult situation there are new and better treatments that may help her live with a decent QOL for years. No guarantees of course, but don’t put your mother’s foot in the grave even a minute sooner than it needs to be. I may be an outlier, but I’m not the only one and with almost 10 years at stage IV, I am not even the one living longest with mbc. Take care
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Thank you for the reassurance. I tend to focus on worst case scenario, and probably do too much reading / research for my own good. I'm trying to hang my hat on the fact that the radiologist and surgeon said they aren't concerned, this probably isn't an issue, very common etc.
Trust me, I'm not happy with all of the imaging studies going on right now. I don't really know of any other cancer type that calls for CAT/MRI/PET scan series before even removing a lymph node. I'm sure the PET scan will be a hoot.
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You're absolutely right. I'm not going to borrow worry. There have been a lot of advancements that will be there if it comes to that.
I've been thinking about the grandchild aspect since my mom's diagnosis. My wife and I have just started IVF after a year of trying. I know my mom wants a grandchild so badly... adds so much more pressure to the mix... ugh...
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ted,
I wonder if more scans are being done "as a courtesy" because your father is a physician. The scans your mother is getting, particularly the PET scan, are unusual for what will hopefully end up being a Stage I breast cancer. It may be that the PET was ordered only because of the issues seen on the CT.
The reason these scans are not usually done with an early stage breast cancer is because if there are any rogue cancer cells that have moved beyond the breast, unless the patient is symptomatic, usually the amount/size will be too small for any scan to pick up - but meanwhile, these scans picks up all sorts of other things that require follow-up but are usually harmless.
Here are the NCCN Guidelines for post-diagnostic work-up:
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Hi again Ted,
Given your brother & your Dad's occupations, they are very familiar with the testing & time it takes to come to a compete diagnosis which is essential for developing a treatment path. Your Dad, particularly, knows how stressful waiting can be for those on the emotional journey to fertility.
However, most of this will be confusing to you as reading legal documents are to those of us who are not in the legal world. This is why forums like this exist - to help us learn and gain confidence for what comes next. I'd encourage you to take some time to read the different areas here. You'll find men & women like me with Stage I who had surgery & radiation and now I go about living 16 months after my diagnosis all the way to women who have lived decades with Stage IV and continue to receive therapy while going about their lives.
Treating breast cancer is really a team sport. Your mom's case has probably already gone to her hospital's tumor board to discuss next steps. Most tumor boards consist of surgical oncologists, medical oncologists (who specialize in different areas - breast, GI, lung, etc), radiation oncologists, pathologists, pharmacists who specialize in oncology, nurse managers, social workers, etc. They will decide based on her cells characteristics if adjuvant chemotherapy is recommended before surgery or if she goes straight to surgery. After surgery, final clinical staging takes place which is more detailed than biopsy staging. The tumor board then meets again & a consensus is reached for subsequent treatment. They will follow current NCCN (National Comprehensive Cancer Network) guidelines. She is probably getting her second opinion at Abramson Cancer Center which is an NCCN member institution. Some of us will use these NCCN institutions for primary care and others might use them for treatment decisions while actual care is given in a center that has close relationships with them. Here is the reference for the guidelines which may help as you follow along: https://www.nccn.org, https://www.nccn.org/patients/guidelines/content/P..., https://www.nccn.org/patients/guidelines/content/P....
Ted, you will find your words as your Mom works through this. When I mentioned something similar about growing old together to my 35 year old physician daughter, she gently said to me 'of course you will grow old together. This is a bump in the road, not the end of the road.' I will forever hear those confident words in my head knowing in that immediate moment, she could see the future when I could not. Try to be those eyes for your parents until they can see past this immediate bump.
Being close family is stressful. I wish you all the best,
Jane
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Trust me. I don't get it. Unless my father straight up lied to me regarding her initial diagnosis, the tumor was ~2cm, no concerning nodes on imaging and no symptoms to speak of.
Now, if these lung nodules aren't benign I'll probably feel differently.... but holy hell it is adding a serious level of stress.
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Ted,
Just to add, I had a CT & PET scan before my surgery. I had a lung lesion which was causing a significant amount of worry & ultimately had a lung biopsy. It was an infection that caused a cavitary lesion that looked much like lung cancer. My MO wanted to know if I had lesions anywhere else, thus the PET. Fortunately, I did not.
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jhl,
Doing PET’s on lower stages is not the norm. This doesn’t mean it’s never done but it is not usual. See beesie’s post above.
Ted,
I tend to agree with beesie in that your mom is probably being extended some professional courtesy as PET scans for early stage patients is uncommon. As for grandchildren, yes I adore mine but that’s one of those things that we don’t have total control over. I wish you and your wife the best!
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I don't see how adding in scans when not indicated by NCCN guidelines is doing us any favor or courtesy.... but that's just me....
Hoping the grandchildren come sooner rather than later. I want her to have a little munchkin to dote over.
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I had a non-contrast chest CT scan a few days before surgery because I'd been a smoker for decades and my MO wanted something more detailed than an x-ray. It found minor lung crud, but also a good-sized growth on my kidney. A few weeks after surgery, I had a contrast CT of chest, abdomen, and pelvis to get the kidney cancer detail. Even with two simultaneous, unrelated cancers, I still did not have a PET scan. I've always thought they were only used if mets were suspected based on symptoms or heavy lymph involvement or something similar.
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This was my understanding too based on how other cancers are diagnosed / staged...
Whatever. Mom has her PET scan tomorrow and my fingers are crossed that there are no more blips... and also hoping that she likes the docs on her second opinion Thurs. Would love for her to make a switch.
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Ted - my take after reading 27 posts - who is in the driver's seat? If your Mom is reasonably intelligent & capable, it is not fair for you, your brother or your father to try to take control. Stand back. Give hugs. Validate her feelings. Offer suggestions - then back off. Sorry if that seems rude, but it is your Mother's cancer. Give her some credit. Since she has a doctor & a lawyer for sons, she can't be a total idiot. I don't think you said where your Mother lives. If she's at an NCI hospital or a major medical center, she will get good care. And as others have suggested - over the TOP care - since your Dad (her husband) is a doc.
Wishing you the best, but more important, wishing your MOTHER the best. Hope she might feel comfortable joining BCO on her own.
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Quick update...
Just got word that my mom’s PET scan was negative. None of the nodules lit up at all. Apparently there was a nodule somewhere between 9-10mm, a 5mm nodule, and a couple 1-3mm nodules.
There was a small axillary node that lit up, but the med onc and surgeon were not concerned.
We are breathing a major sigh of relief.
My mother’s onc team is now recommending we move forward with a double mastectomy, radiation and chemo (depending on nodes/onctype).
Realizing my mom is just beginning her journey... looking forward to staying engaged with this site. Maybe I’ll convince mom to join!
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Ted - thanks for the updates.
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Great news on the clear PET scan, Ted! Please keep us updated on her progress. I hope all goes very very well.
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