Scared and alone. Please help.
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Bossmom, MRIs see a lot more "stuff" than mammograms do, and most of those are nothing. Additional masses might mean you need a mastectomy rather than lumpectomy, which is what happened to me (2 separate tumors in left breast), but it didn't change my prognosis at all. Because you have cancer, radiologists will make note of and flag every little thing they see. I ended up needing a fourth biopsy due to something found on my MRI, this time in my contralateral breast, and it was benign. I too had CT and bone scans, and ended up having a fifth biopsy, this time on my thyroid, and it too was benign. I was an emotional wreck, but once treatment started I was a lot better. Your oncologist needs all the information to make the best treatment plan for you. My lab doesn't do Ki67, which bugs me, even though I know the results aren't really very useful.
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@bossmom24, regular bloodwork, ct and full bone scans are the standard approach here in Australia. I didn't get a Ki-67 result on my pathology. It can be nerve-wracking waiting for results, but they feed into the treatment plan. As everybody is different and deals with worries and stress in different ways, I am reluctant to give advice, however I used exercise to help get my mind in a good place at the beginning of every day - not a lot of exercise but enough to get the endorphin thing happening. In your pocket for support
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bossmom,
I have been thinking of you as you go through what is without a doubt, one of the roughest times in bc diagnosis, which is waiting for ALL the information to be confirmed and available to your doctor and to you. I’ll go back to my puzzle analogy.
Right now, you have some of the puzzle pieces. Some are very important in and of themselves, such hormonal profile. Others may or may not be as important on their own but depend on their relationship to the absence, presence, or magnitude of the other pieces. Each piece has a story to tell, but any given individual piece is likely to present an incomplete or even insignificant view. When all the pieces are present and viewed as a whole, then you get the complete picture and your mo will create a treatment plan based on that. Looking at one piece, like Ki-67, in isolation tells you very little and has been said, it’s considered by many to have little overall value.
Breast cancer is a million times more complicated and subject to more individual variations than I could have ever imagined. Please have faith in your doctors as they wait for all info to become available, evaluate the whole situation , and then develop a treatment plan. Take care1 -
thank you for your comments.
The reason I said the appointment did not go well was because I did not feel that the surgeon was a good fit for me. She did not make me feel comfortable, cared for or confident. I guess that’s not her job, but Instead, she seemed cold…talking robotically about my report. She did not give me an ounce of reassurance. She seemed annoyed that I asked her for my stage and again when I questioned what the low-positive her2 means for me. she answered most of my questions with a generic answer like, “that’s for the oncologist to decide” and wanted me to get ct and bone tests but would not order any testing stat, knowing my bad anxiety. She said stat is for emergencies like car accidents?? Wtf.She also didn’t even mention the mental health questionnaire that I filled out very honestly. Even stating that some days I feel like I would be better off dead.
Also…the surgeon would not talk about anything surgery related until after the oncology appt but I couldn’t make the oncology appt until after I met with the surgeon!
I’m glad a made 2nd opinion appts, but they are scheduling farther out and this ki67 score makes me feel like this is growing and spreading by the second.
I’m discouraged. And just plain sad.2 -
I am 100% in favor of second opinions and changing doctors if needed! In her defense, at least partially, she is a surgeon not an oncologist. She is not the person to answer questions regarding stage, HER2 low* or anything else oncology related. It is outside the scope of her expertise, even though she is a doctor. I know your anxiety is high but breast cancer is simply not an emergency and use of the few machines they have to do scans has to be balanced between emergencies and scheduled scans. Many facilities have limited , often only one or two, of these astronomically expensive machines. Please avail yourself of anti-anxiety meds as needed. It was negligent of her not to have addressed your mental health questionnaire especially if she was aware of your anxiety. If you are not comfortable with her consider switching but I will add that your relationship with a surgeon will be brief as most of your care will shift to your mo after the post surgical period.
Breast cancers tend to be very slow growing, even some of the more aggressive types. They simple do not grow and spread quickly like an infection. It may be a bit of a mind shift but that is the reality of bc so please banish the growing/spreading quickly thought from your mind! As to the Ki-67, again, may not be accurate, not used by all cancer centers, and NOT a major piece of the puzzle. You are giving an enormous amount of importance to something, that while a piece of a bc diagnosis, is relatively minor and not universally used.
* HER2 low is fairly common. I am also HER2 low and that had no bearing on my treatment, but that doesn’t mean it won’t having any bearing on others tx. There was a clinical trial to see if some drugs used for HER2+ patients would benefit HER2 low patients. I don’t know if anything came of it or if it is still ongoing.0 -
Oh Bossmom. I'm so sorry your appointment caused you to spiral. Some doctors do not have a good bed side manner and it reads like you may have gotten one of them. But I will say, in her defense, that she's a surgeon. Her expertise is in removing breast tumors and that's it. It's probably why she didn't want to give you a lot of info on your stage. However, it is IMO quite inexcusable that she didn't acknowledge your mental health questionnaire. I mean why have you fill it out if they weren't going to pay attention to it.
But I agree totally with what you've been told about your KI-67. It is a measurement that can tell you whether your tumor is dividing fast but it's notoriously finicky. Some labs measure it high while others may measure the same tumor low. In fact my NCI hospital didn't even give it to me. No one cared. It probably would have been fairly high I would think since I was a grade 3 but who knows. I also had a 2+ score on my HER2+ test but further tests made me negative as far as HER2+ treatment goes. Essentially what I am is HER2 low and they do not respond to the standard HER2+ treatment so they just consider it negative. Probably what you will end up being and actually what most hormone positive tumors are. It's very common and only means something in the metastatic section since they do have a treatment for it there. In early stage cancers, which right now every indication seems to be that you have one even with the lymph node involvement, it means nothing. I will say though that one positive about it is that if you need chemo - and you might considering your relatively young age and lymph node involvement - that low HER2+ will probably mean that your tumor will respond quite well to it. I had chemo and although I don't know how I responded since it was after surgery I am hoping my intermediate oncotype score and low HER2+ made my cells divide quickly enough for chemo to target and kill any rogue cells.
The other thing I wanted to mention is the comment that your surgeon made that she wouldn't rush your scans, that they were for emergencies only. I know that makes you panicked but I will also say that if your surgeon thought your tumor was growing quickly or that your life was in danger that she would have rushed everything. They move quickly if they think they need to. The fact that they're not actually shows that they think you're pretty standard. Most hormone positive breast tumors, even the more aggressive ones, are fairly slow growing. I had a grade 3 and was petrified that in the five weeks from diagnosis to surgery, it would spread and grow. And at surgery it just hadn't. It was bigger than they thought but that was because scans of dense breasts aren't very accurate in determining size. But nothing else changed. And the scans they're recommending for you are standard if lymph nodes are involved. It doesn't mean they think it's spread anywhere because that's actually uncommon at first diagnosis. It just means they're being thorough so that they give you the best possible treatment. But we all know that this is horrible and it didn't help that your surgeon didn't seem to care all that much about your anxiety. But nothing you wrote is unusual or makes anyone think that you'll be the exception to the rule which is that most hormone positive tumors are caught early and respond great to treatment. Just try to hold on a little longer until you can start it.
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thank you so much. The info you both posted was helpful and reassuring. I know she is just a surgeon, but the protocol was to meet with her first, then oncologist. So she asked me what questions I had, and seemed annoyed by what I asked. She also made my husband feel like his question was dumb also. She also said I possibly have a heart murmur that I didn’t know about which freaked me oit. And also explained that my lymph node barely had any lymph cells in it, which seems extra scary. I dunno. I just was hoping to feel a little better and have somewhat of a plan after this appt, but instead, just more questions, waiting and worry.
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I am sorry that you expected more of a “plan” from your surgeon. Again, I think you were expecting her to take on the oncologist’s role but that is not her job. I totally understand that you want the plan of action laid out for you but even your mo won’t be doing that until all the info from testing is complete. You really do want the complete info to be the basis upon which your mo develops a plan. You don’t want those who are not qualified, like a surgeon, to make or even guess at a plan. Additionally, none of the tests you’re having done are unusual or indicate that things are “bad”. While we all hate the waiting remember that bc is not an emergency. Urgent? Yes, but you are progressing through the diagnostic process in a totally typical fashion.Take care
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Bossmom - I'm going to add a bit of a twist here, although I think that what you've been hearing from others makes sense and is the "norm" or "usual". Do go for those 2nd opinions and seek a doctor that you feel reasonably comfortable with. When I was in your situation, I researched online, the local surgeons, and found one who was on a "best surgeons" list that was very close to me. (I live in a large city and there are numerous medical places and doctors, but I really only wanted to go to my nearest hospital 10 minutes away.) I had been given an appointment with "the next surgeon" on the list by the doctors who initially diagnosed me, but I called the office of the surgeon I wanted (same medical facility) and they switched me to an appointment with him. He turned out to be fabulous and was very kind and accommodating, unlike the surgeon you met with. I was actually too new at all of this to have many questions, but the ones I did have, he answered. He did the biopsy, and even came to see me in the ER at one point to deliver the results, because he noticed in the system that I was there, and he highly suspected that one of the reasons I'd gone to the ER was my "freaking out" waiting for the biopsy results, and he was right. He had tried to call me and couldn't reach me at home, so had checked in the system to see if I was there anywhere. He also personally made the referral to the oncology department and he personally went over (this was one small campus) to the radiology place and made the initial CT and bone scan appointments for me! He told me exactly where to go and who to ask for, etc. I had no idea what they were at the time, nor did I have the mental presence of mind to really be able to do it on my own. ( I didn't have the help of a husband, and be really glad that you do!). He saw and guided me through all of the initial stuff, and then after I was done with neoadjuvant chemo, he did the surgery, and continued to follow up with me until he retired about 18 -24 mos after my initial diagnosis. I developed some lymphedema in my arm after the surgery, and he is the one who noticed it (in 2 seconds, and it's mild) and made the referral for me to get it treated, not my oncologist. He was the one who followed up with all the lymphedema issues until he retired, and his partner actually continued with it for about another year. My oncologist barely acknowledged it. My new oncologist, however, is very attentive to it all, and I haven't had surgery follow up for years now.
My point here is do shop around. There are some really good and caring doctors out there who actually provide "care" and not just "treatment". Ask around, read around, get personal referrals. If there is anyway you can get staff at your medical facility to tell you who they'd go to or send family members to, do that. It's not always easy to get them to talk (understandably). I did find that my surgeon was indeed the "go to" surgeon for most of the people who worked at the medical facility. I really lucked out and I know that this doesn't happen to most people, but do check around and I'm sure you can find someone better than the one you saw initially. Wishing you all the luck in the world!
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bossmom,
I hope threetree’s post further encourages you to understand that although waiting is no fun, it will not jeopardize your bc situation. If you truly feel uncomfortable with your surgeon find another. It will not compromise your health.
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I would definitely echo to shop around if you want. I will say my surgeon was very responsive and kind. Luckily I met with both her and my oncologist the same day so anything she didn't feel qualified to answer was easily taken care of in the next appointment. But to be quite honest, there wasn't much she didn't answer. And she has never acted annoyed with me or anyone I brought with me. Ever. At my NCI hospital I have been treated kindly and with respect by everyone. You deserve that, too, so if you feel uncomfortable don't hesitate to look around.
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These are the genetic markers of your tumor, they can determine the kind of chemo or immunology treatments to give you. This is not bad information. You got the bad news when you where told you had cancer. All the rest is them figuring out your treatment plan
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I met with an oncologist today and she presented me with a treatment plan. But some testing still has to be done before it’s for sure…but what I’m reading doesn’t make sense. She said neoadjuvant chemo. First AC biweekly for 4 cycles, then Taxol weekly for 12 cycles.
It seems to me most people getting this combination are triple negative and I am HR+ and HER2-
Is this unheard of? Where can I find info on this? Is it because of my high ki-67 score that it’s being treated extra aggressively? Anyone know about this?
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hi @bossmom24 im so happy you have a plan! It might be due to the larger size of your tumor too. That’s just something I’ve heard of. I know chemo is not a fun thing to think about but it makes everything feel just a little better when some plans are put in place. I’m praying for you!
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bossmom,
Three cheers for some forward movement! I can’t answer your question with specifics but I do know that neo-adjuvant chemo has become much more common in recent years. Additionally, no two patients are alike, even if they look like it on paper, and doctors have different approaches. This would be an excellent question to ask your mo. Does she use email? That or a short phone call might help ease your mind. I know you continue to worry about Ki-67 but remember it’s not of major significance and many MO’s don’t even test for it because they feel it has little to no significance. Try to look at it from that perspective and know that it’s not worth stressing out about. Take care
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thank you. I’m getting a mammoprint even though we are all pretty sure it will come out high, but if it does, I can be part of the research study and be eligible for immotherapy. So I have to wait for the ct/bone scan and the mammoprint to come back before starting chemo. They also would like my genetics test done soon not sure it’s going to make a difference in treatment. I’m still going to 2nd opinion appts, but I do feel better after today. Just getting some more info and my oncologist was much more helpful, patient and understanding with me.
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I had the same treatment they are prescribing for you; neoadjuvant AC and then Taxol on the same schedule. It was because of my tumor size. My facility doesn't do Ki-67 and they told me they used to do it years ago, but only really just to determine if someone needed chemo or not, and they said that in my case it was a "no brainer" anyway, that I would need chemo, simply from the tumor size (abt 5 cm.). I am ER/PR+, HER- and so not triple negative. I'm really sorry you have to deal with this, but as they say, it is "doable" (sounds cliche, but true).
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threetree, my tumor is right about 5cm so same as you. How are you doing now?
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Hi Bossmom
I was stage 3 grade 3, 11 positive nodes, big tumour in right breast, hormone positive. Not good news at all but I did all the treatments and am now over seven years since diagnosis. I remain on anastrozole. You’ll get through this.1 -
bossmom, so glad to hear you are getting some answers so you can start building your team and a solid plan. This testing and waiting for results part feels horrible. I hope all of your results are the best possible ❤️
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Hi Bossmom - I was officially diagnosed in the fall of 2018. I had the biopsy and got the ER/PR+, HER- status and approximate size at that time. Then I had all the scans that showed no spread at that time. Then I got the neoadjuvant chemo starting in January 2019, for the purpose of shrinking the tumor, so that surgery would be better/easier. I did that probably through early June, then had surgery (left mastectomy) in July of 2019. My tumor had shrunk quite a bit, but was not what they call a "PCR", as that's more of a triple negative thing, and then got further results regarding tumor bed size, node status, etc. I continued to have no nodes and no spread per the surgical pathology results. I then had radiation (proton) in the fall of 2019, finishing up in late November, which allowed me to have a very nice Christmas and New Year. My oncologist had wanted me to start Letrozole (an anti-estrogen or "AI") in mid December, but I refused, saying that I wanted a nice holiday. I waited until early January 2020 to start it and have no regrets. I chugged along for 3 years that way, with no problems except for the Letrozole side effects which were not always fun, but again "doable".
I'm sorry to have to tell you the next part, but in January of 2023 I went to the ER with some back pain, they did scans, and saw that the cancer had spread into my spine, ribs, and sternum, so I unfortunately became stage 4 at that time. I've been on the stage 4 drugs Faslodex and Verzenio now for about a year, and like all these drugs, they are not fun, but I'm getting through it and am still here about 5.5 years after my original diagnosis. There is a person on this site known as "Shanagirl" and she was diagnosed with a similar situation back in 2013 I believe, and she too became stage 4 in January of 2023. You can see though, that she had about 10 years before becoming stage 4, while I only had about 4 years before that happened. There are others who have had even more time, so it is a very variable thing and there is no way to know or judge what might happen down the road. Just know that you could have many, many years with your current diagnosis, and even if it progresses to something more (it might not at all), you could still have many more years.
You just have to take it one day at a time (another cliche, I know, but again a true one) and "go with the flow". Do the treatments as they come, enjoy your life as best you can each day, and just deal with things and cross those bridges when you come to them. This is as they say, "a crap shoot". Take care of yourself, enjoy those kids and your husband, and just take things as they come and continue doing what you can, what you love and enjoy on a daily basis. You will get to a better head space here at some point for sure.
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Bossmom - Just realized that Shanagirl, whom I told you about above, had more like 13 years before becoming stage 4, not 10, as I had said. You might also want to look at the threads here labelled things like "Stage 2 and out 5 years, 10 years," etc. They have them for all stages 1,2,3, and 4 for different year spans5, 10,15, etc. You will see people on those who have gone on for years and years with their original diagnoses never changing, no progressions, etc. They can be very inspirational. It is not inevitable if you are a lower stage right now, that you will eventually become stage 4 like myself and some others. Many, many go on with their original diagnosis for decades.
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Hi bossmom, I, too am so glad you have a plan in place; it takes some of the anxiety off the waiting. And you can start preparing yourself for what's ahead. As you go through the process, keep asking questions, but remember every person and their breast cancer is different. Concentrate on YOU and what you can do for achieving the best outcome for YOU. Big hugs and wishing you all the best going forward.
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my worst fears are starting to come true…please tell me there is still hope….
My bone scan came back clear. But my ct scan showed at least 3 suspicious liver lesions. Nothing anywhere else. Lungs clear, just some cysts on my thyroid. What could this be???? Is there a chance they are benign?? It seems so unlikely due to the fact that there are at least 3 and I have freakin breast cancer with lymph node involvement. MRI needs to be done but I feel like this is it…..stage 4 in liver and I’m so scared for my babies. This is what it says:
LIVER: There is a 1.3 cm heterogeneously hypodense mass in the left lobe of the liver (series 2, image 159). There is a potential subtle similar mass measuring 0.6 cm in the anterior mid right lobe of the liver, abutting the capsule (image 178). A third subtle heterogeneously hypodense mass measuring 1.3 cm is seen in the posterior right lobe of the liver just deep to the capsule (image 167). Metastatic disease cannot be excluded with respect to these 3 foci. Subcentimeter hypodensity in the inferior lateral right lobe statistically represents a cyst.
At the bottom It says they are suspicious of metastasis.0 -
bossmom,
I’m sorry to hear this. Unfortunately, none of us can’t venture a guess as to what it might or might not be. What does your mo suggest as a next step?
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an mri. I was just hoping someone out there might have had this happen and they end up benign…I just need some hope
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{{{Hugs}}} I was wondering how you were doing. I’m so sorry you’re going through this, and I hope it’s just a scare.
There is ALWAYS hope. I’m going to be praying hard for you. I have an in-law with growths on the liver, and they’ve stayed benign. My mother had a couple too, which stayed benign even, though she had another cancer. But I get you about the breast cancer part making it concerning. I hope you get answers fast, and they’re good ones. Are you getting treatment yet?0 -
bossmom,
Livers can have cysts or other non-cancerous stuff growing as can most other body parts. Even if someone else has suspicious liver spots, and some were benign and some weren’t, it would have no bearing on your situation.
I’ve been pretty straight with you and very pragmatic. Nothing that happened to anyone else is predictive of what your situation will be. It is so very difficult but the only way to know what you’re dealing with is to let the process play out. Have you sought counseling yet? While your fears are completely understandable, some counseling , and even meds, might help take the edge off of your panic so you can deal with whatever comes next. Take care
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I have had a couple of hypodense masses show on my liver once in awhile, and then at other times they don't show. The radiologists and the oncologist just note them, and continue to call me "bone only" re my metastases. They apparently see no reason to do a biopsy. To answer your question of "is there still hope?", the answer is yes! Just keep reading about so many of our experiences here. It is really hard, no question about that, but we all sympathize and are here to help. And again, there absolutely is hope out there.
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Yes there is hope! The liver, like any other organ, can have weird stuff on it and it can be benign. There have been multiple people on this forum who have mentioned fears in regards to liver lesions and then have found that they were nothing to worry about. I am so sorry though that this is happening and that you now have to wait to find out about this also. I am going to echo Exbrn though. If you have not started therapy you should. And whatever they can give you to help with anxiety you take.
And I will mention one other thing. IF worse comes to worst - and that's a big if - there is still hope. Always. New medications are coming out all the time and sometimes if you only have a few spots that are active beyond the breast they can still treat with curative intent. But I know you are so frightened and I would love to know what to say to relieve it. I don't think any of us can though because this is just what this part looks like when you are first diagnosed. They have to know what they are dealing with and we just have to bare with it until they do. We're here though. You've got an army of women cheering you on.
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