Loved one, checking in. (Hope its okay)

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jurisdoctor
jurisdoctor Member Posts: 11

Hi All,

Last Wednesday my Mom (68) went in for a mammogram and ultrasound following finding a lump. At the time I didn't know enough to encourage obtaining a BI-RADS score. All I know is about three hours after leaving the house my Mom called and tearfully told me the radiologist had looked at the lump she found, imaged her other breast, and found a small lump there as well. Worryingly, the radiologist apparently told her there is something in her lymph nodes on the one side as well. Biopsies on both L/R lumps and lymph node on one side to be performed on the 13th and 18th, respectively.

Since then I have spiraled down the rabbit hole of internet research and in to despair. Based on what she said regarding the size of the initial lump she found, I have difficulty imagining this has been caught early. My Mom was never one for doctors, so this was her first mammogram. About a year ago she had a scare with high blood pressure, decided she wanted to be around to see my daughter off to college (she is currently 3), and changed her diet, lost ~65 lbs, and started exercising. All of this feels like a wave hitting her ship just when she was starting to right it.

At any rate, I'm just looking for some good thoughts in this direction and to let anyone reading this who is waiting on results for themselves or their loved one to know that I'm pulling for them.

All the best, and thanks!

Comments

  • Falconer
    Falconer Member Posts: 1,192
    edited December 2017
    Jurisdoctor,
    How kind of you to post on behalf of your mom. She is lucky to have such a loving child.

    Things will become clearer after the biopsies are performed. There are many effective treatments and although this may be a difficult year ahead, your mom will come out on the other side of it. So many of us have.

    Keep us posted when you have more info about diagnosis and treatment. And please don't hesitate to ask questions on your mom's behalf.
  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thank you Falconer, I appreciate your kind words and encouragement. I have ordered her an iPad Mini that I intend to load with her favorite shows in order to provide her with some distraction while sitting in waiting rooms or resting up. At some point, when the time is right, I hope to introduce her to the community here.

    Thanks again and I wish you and everyone else all the best for the holidays.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Thank you! We are happy to answer any questions when you get the biopsy results, and of course to welcome your mom if she is is interested. Sending you both good thoughts.

  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited December 2017

    Hi Jurisdoctor - The internet and Dr. Google are not your friends right now.  So much of what you will read is outdated or not representative of the true state of breast cancer these days.  I know the waiting is hard but it really is best to not worry or research anything more until you get the biopsy results.  Please do update this thread when you have more information or have any questions.  There are so many wonderful women (and men) on this forum that can and will help you through this.   

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2017

    Worry when you have something to worry about....until then....status quo. Right now, you really don't know what is going on. If I knew at the time of diagnosis, what I know now, I would not have been a basket case. Hopefully, it will have been caught early.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited December 2017

    I'm so sorry you've landed here looking for answers for your mother. I truly hope that the biopsies are negative. Is there a reason that they are doing them on different days?


  • ToughCookie101
    ToughCookie101 Member Posts: 191
    edited December 2017

    It is hard when a loved one is diagnosed. My mom was diagnosed at 58 and it was tough not knowing. I was recently diagnosed at 33, and for some reason I found it harder not knowing with my mom’s diagnosis.

    My mom had two satellite tumors and nothing in the lymph nodes in the end. She did very well through treatments. She was a seven year survivor when she passed away in June from something totally unrelated. I am just saying this because like others say, you don’t know until you know.

    Sending positive vibes!!

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thank you so much again -- I intellectually know that worrying before we have more information (or at all, really) doesn't do us any good, and my research is speculative, but I find it difficult to avoid going down that route.

    ToughCookie, my thanks for your positive story and condolences about your Mom.

    NotVeryBrave, the radiologist, or nurse, or someone, told her that more than the two biopsies would be "too much for the body." My Mom is a healthy 68 year old, so this did not seem to be indicative of their view of what she could handle, but rather some kind of global theory?

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    jurisdoctor, just a thought, it isn't too late to ask for a copy of the imaging report (including the BIRADS score). your Mom can call and ask for a copy to be sent to her, or access to the report via a patient portal.

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thanks for the tip MTwoman, I'll see if she can contact radiology and get a copy of the imaging.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    that will at least give you some indication of what they're thinking (and why). It's a good practice to get copies of absolutely everything and keep them in a binder. You never know when your Mom might want to be seen quickly at another facility or by a specialist and having a copy of all of her records (including images on disc) let her do that without delay.

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Henceforth I will try to be as involved and physically with-her at appointments as I can, but I wasn't there for this. Apparently the radio technician performed the ultrasound, and excused herself from the room to get the radiologist. The radiologist came in and performed the ultrasound and, after about ten or fifteen minutes, pulled off her gloves and said "We are pretty sure it is breast cancer. Do you have any questions?" My mother said something to the effect of "What?!" and the radiologist repeated herself. My mother then said that she didn't think she did, and she was in shock -- the radiologist said "you can get dressed and we'll see you outside." She cried for a couple of minutes in the room and pulled herself together, got dressed, and left. This was the extent of her diagnosis and remains the extent of the information she has.

    Unfortunately in this vacuum of information, her (and my) research (though I keep mine to myself) has lead her to believe that if they are "pretty sure" from an ultrasound that it is BC and is in a lymph node that this can't be early stage. She has indicated to me that the one lump is kind of sizable, such that she doesn't understand how she missed it until now. As I think I had mentioned, her regular doctor has given her breast exams (as recently as ~10 months ago) but she has never had a mammogram before the above experience.

    At any rate, the way this was handled and in the absence of good information, a flood of bad thoughts has flooded. She keeps talking about the size and the lymph node involvement and is certain biopsies will confirm cancer and that she is at least Stage 3. I try to tell her that if they were certain it was cancer, they wouldn't need a biopsy. Since my only source of information is her and her experience at the office, I have a difficult time convincing her that everything will be okay, or disabusing her of her concerns. The 13th and 18th (+ 5-6 days for results) can't come soon enough.

    I can't help but feel like if this was a condition that men faced first, we would likely have more years of treatment research under our belts and, second, stories like my Mom's would be less common. My heart goes out to all of you ladies that are facing or have faced this.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited December 2017

    I would recommend checking to see if they would consider doing any and all biopsies at the same time. I had a breast and lymph node done at one visit and I've heard of many women here having multiple sites done as well. The anxiety related to the waiting is really hard - waiting for the biopsy and then waiting for the results.

    I think that they are probably seeing multiple concerning features for the radiologist to state that they think it's BC. But - no one will know for sure until the pathology results are in. And there are so many different types of BC and varying treatments as well.

    I know it's hard to not get ahead of yourself in this. It's partly to understand and prepare and it's partly to have some semblance of control. Just try to breathe and keep moving forward.


  • chronicpain
    chronicpain Member Posts: 385
    edited December 2017

    Jurisdoctor, the bedside manner and sensitivity of the radiologist here was atrocious and should be used as a model for medical students on how NOT to deal with patients.

    I agree with other posters to see if you can get both biopsies scheduled the same time, and to get a report copy faxed or personally picked up on every report as soon as available, after mom signing an ok for release of information. She is legally entitled to her info. You may also want to check with the primary care doctor, the ordering doctor, if she has a copy of the imaging already to give to your mom, or for her office to call and ask to have it faxed to her and then she can pass it to you, another way to get it,

    If you get pushback on any of this it would likely not hurt to politely remind them you are a J.D. and are aware of patient rights to their records and reports in a timely manner. Even if you do wills and trusts or family law and are retired and have nothing to do with medical malpractice suits, docs and admins take note when they know someone is a J.D., or married to one.




  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    juris, as difficult as it may be right now, I would encourage you to help your mother focus on what you/she know/knows instead of worst fears. i.e. the radiologist believes that this finding has a good chance of being malignant, and that she wanted to give your mother time to prepare herself. It is NOT an inevitability, as the radiologist is human (albeit experienced in this very skill set), and that only a biopsy sample, examined by an experienced pathologist, will be the basis for a diagnosis. It is NOT necessarily "Stage III", as that can only be determined after all surgeries are complete.

    But the powerlessness of waiting and worrying can be very difficult as the mind has no other task to occupy it. Perhaps, instead of imagining worst case scenarios, you can both engage in "getting prepared" tasks that at least will be of some use if the radiologist is correct. There is a thread here "just diagnosed get prepared" that may have some ideas about things to do (https://community.breastcancer.org/forum/5/topics/748296?page=13#idx_363). There are also things like making some meals and freezing them (I liked soup), getting the house clean and organized, making a special space in the house for relaxing (including a blanket, charging station for phone, music, perhaps a lovely scented candle, book/tablet etc) etc. You could also spend some time together doing something fun, to take your minds off the wait and scheduling regular exercise (like a nice long walk). I do know it's difficult, but perhaps having a 'to-do' list will feel more empowering. None of those things on the list would be wasted if the radiologist is wrong (as we all hope).

    Please do keep us updated and I am sending you and your mother my warmest wishes!

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thanks everyone for your help and support.

    My Mom had the second biopsies today on her lymph nodes. Results came back from the lumps, it is BC in both breasts — my research indicates this isn’t terribly uncommon and not necessarily an indicator of a terrible prognosis? Holding on to that.

    She originally had an appointment to meet with a surgeon on 1/5, but made a few calls and spoke about her overall psychological state and wanting to move quickly and we will be meeting with a surgeon on Thursday. Fingers crossed that will bring with it some good/hopeful news. I think she needs to hear from some medical professional that there is a path forward with some hope. So far it is has been all test results and “I’m so sorry” with long faces.

    The rest of the family is holding it together in her presence — she has a “just give me a chance and I’ll beat this” attitude — but privately we are about to pieces. We just need some good/hopeful news.

    Thanks everyone for listening

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited December 2017

    I think this is the worst part, when we have some scary information but no plans for treatment. It's easy to give in to our fears when we don't know what's goung to happen next. Hang in there. Breast cancer is one of the most treatable cancers and the vaaaast majority of women do NOT die from it. Like my oncologist out it, "This year is gonna suck, but you'll get through it eventually. " she was right. My life sucked for about a year. I didn't die and now my life is pretty awesome. I hope the same for your mother.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Thanks for checking in; I've been thinking of you and your mom. Agreed that breast cancer in both breasts doesn't necessarily mean it's an advanced stage. Do have your mom request copies of the biopsy report; you'll want to know tumor size, stage, ER status and other pieces of information to judge the severity and the best treatment plan. You'll also want to know if it is IDC, ILC or DCIS. But breast cancer is treatable and sounds like your mom has a good attitude. Hang in there.

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thank you all for your thoughts. We are heading over to the surgeon's office today for a 10:30AM appointment. We were told we will get the hard copy biopsy results then -- but we have heard back that both breasts were cancer, as were (3?) nodes. We just really need a win, if you can keep the good thoughts coming we would appreciate it!

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Definitely sending good thoughts your way. I think you said your mom is 68 and healthy, so please reassure her she will make it through this. Admittedly the next few months will be tough, but soon it will all be in the rearview mirror.

  • muska
    muska Member Posts: 1,195
    edited December 2017

    Jurisdoctor, I hope your mom's appointment goes well and you get more information. They will certainly run more scans to see whether it has spread beyond the nodes or not. If it has not - quite possible because lymph nodes are there for a reason - a healthy 68 year old can surely go through required treatment and be fine.

    Best.

  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited December 2017

    Thanks once again for all of your thoughts, I have been passing them on to Mom and she is most appreciative.

    I will post a longer reply tomorrow -- for now, Stage 3 ILC with lymph metastatic carcinoma on left side - grade 2. Grade 1 on right side, IDC, stage 1. Both sides ER and PRO positive, Her2 negative on left side for sure, uncertain about right for now -- leaning positive.

    The largest mass is 12 x 11 cm and that is on the left, with the abnormal lymph node. Surgeon wants to start chemo asap (seeing oncologist Jan 4) and opt for surgery post-chemo, rather than the other way around. Explanation was that they want to be certain its working and working well before they operate.

    Next steps are CAT/PET/bone scan, bloodwork ahead of that, and the Jan 4 meeting with the oncologist (unsure if the scans will come pre or post that). Surgeon was ... I will say cautiously optimistic. Said if it is indeed Stage 3, its "curable" and if its Stage 4 its "treatable." Pulling for a 3.

    So far Mom is numb, I think. Relatively relaxed and has an "this will be rough but I'll be fine" attitude. Was worried about losing hair and being able to continue to watch my daughter during the day. Plan here is to keep her looped in and babysitting every day that she conceivably can, as much for Mom as for my daughter, who relishes her time with grandma.

    Thanks again for all the thoughts. I feel, similarly, cautiously optimistic. Folks here are much more expert than I, so please feel free to weigh in. Thank you all.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited December 2017

    That's a lot going on. I feel for you and your mother. It can be mind numbing at times.

    I don't have anything to add except that it really is an advantage to have chemo first and know that it's working in your body. I was lucky to have all of the cancer destroyed by the chemo and targeted drugs I was on.

    If she's concerned about losing her hair ( and most are) then she should look into local wig shops - preferably those that specialize in medical prostheses. Insurance will sometimes cover a portion and the shop can help match her hair color and preferred style.


  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Thank you for taking the time to update us with so much going on. With luck the chemo will shrink the tumor pre-surgery so the plan seems solid. Do keep your mom in that "optimistic" frame of mind because this is treatable. She will be tired at times but she has many years with her grandaughter ahead.



  • jurisdoctor
    jurisdoctor Member Posts: 11
    edited May 2018

    Hey everyone, thanks once more for the kind words. Just wanted to give an update.

    Her PET scan showed no evidence of metastasis, much to our relief -- Stage 3 it remained.

    My Mom has her last treatment of taxol on June 6th, and will be scheduled for surgery in early July -- double mastectomy. So far, so good!

    She had a small set back where her counts were down and she had to take 3.5 weeks off from treatment during A-C. Long story, but she has been working on losing weight to lower her blood pressure and it seems the weight loss did its job and the blood pressure medications were ... overdoing their jobs.

    She has largely managed her side effects from both rounds of chemo, and overall has really come through it well.

    Her mass (which was very large, 12x11cm at least) has reduced to where her doctor was not able to feel it during a physical exam. Her doctors seem pleased with this, but not overly so. When she felt it shrinking in size so drastically I think she was hoping for an effusive "this is great!" -- I think we all were! Alas, her doctors remain guarded with their optimism. I'm sure they have their reasons.

    I've been doing some research (never a good decision) and can't seem to find any definitive information one way or the other regarding significant reductions in size that may not be pathologically complete responses. She may indeed have had a PCR, but as we don't know yet and won't know until surgery I don't want to relegate my research to only the most optimistic of outcomes.

    That's where everyone here comes in, if you all don't mind! Does anyone have any information regarding later stage cancers that are ER+ and weakly PR+ that respond well to AC? It seems like it should be a good prognosticator for things to come.

    Thanks again everyone for your input last time and any guidance you might be able to lend us. It is most appreciated!

    Hope you are all well!

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited May 2018

    Thank you for the update! I don't have the answer to your question but hope someone more knowledgeable chimes in soon. Best wishes to you and your mom.

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