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I have Questions....looking for answers

flowergirl1975
flowergirl1975 Member Posts: 53
edited May 2023 in Just Diagnosed

I just found out that I seem to have extensive DCIS with multi focal microinvasions and a positive lymph node. None of my mammograms picked this up and I have them every 6 months. The MRI I just had didn't show any of it. This is a result of a second lumpectomy. I have decided to have a double mastectomy since my cancer seems to be growing undetected. My surgeon is very supportive of this. Should be having this done in 2 weeks. Im an emotional mess right now and I feel as if I have been given a death sentence. Please please looking for those survivors out there who have been in my shoes and have words of wisdom for me.

Is the fact that I have it in my lymph nodes a death sentence? Is it all over my body? Has it metastasized? I know you dont know….Im just imagining worst case scenario.

I assuming once I have the mastectomy, I will need chemo? When does that start after surgery and if its not right away can I wait that long?

Did anyone else feel alone despite the support from friends and family? I feel alone and very sad:-(

Thanks for listening :-(

Comments

  • iamnobird
    iamnobird Member Posts: 229

    Hi flowergirl,

    So I am currently undergoing chemotherapy for a similar situation. I was diagnosed with DCIS based on some small calcifications seen on my annual mammogram. The 2 spots (6mm and 8mm) of DCIS identified by the biopsy were actually 9 cm of DCIS found on an MRI. I had a mastectomy to remove the extensive DCIS and they found an 11mm IDC tumor hidden in there and a positive sentinel node. None of my imaging had picked the IDC and positive sentinel node up so it was as a shock for all of us in my after surgery pathology. Mine is ER and HER+ so quite aggressive and I am 5 weeks into my 18 weeks of chemo. My prognosis is good. It was caught early and is limited to one node. Mine had nit spread anywhere else, thankfully. They can do a FDG PET scan to check for distant spread if you are worried. But it sounds very unlikely in your case. I will also do radiation after my chemo to “clean up” the axillary area.

    They have so many tests and treatments now and many ways to fight the cancer. It sounds like yours was also caught very, very early and depending on its genetic makeup, you might not even need chemo. You will have a lot of testing coming up, but you will feel so much better when you get answers and have a complete picture of your situation.

    In my case, I had a mastectomy straight to DIEP. Thankfully I healed quickly and smoothly and started chemo about 5 weeks after my surgery. Their goal was to start before 8 weeks.

    I know it is hard, but it will be okay. Your phase is the hardest because you really don’t know what you are facing yet. But you will feel better when you have a plan and start to fight this stuff.

  • dsc
    dsc Member Posts: 50

    Hi again flowergirl. I posted on your other post but I’m still sitting here thinking about you. How I wish I could wave a magic want and make this all go away. But that isn’t possible so I’ll just say this. This week a therapist told me to try and stay in the moment as much as possible during this super anxious time. With every thought that comes into my mind, to think, is this something in my control or out of my control. If it is not in my control, try to put it aside. Also, try to plan things that I can control. Eg. This weekend I will binge watch x show, I will clean the bathrooms, I will bake bread, I will walk twice and mediate twice. That sort of thing. Note - I do have my list of things I can control ready to go, but I completely expect to fail regarding completion of that list. And that’s okay. But I’m trying. I have had anxiety my whole life so this situation just amplified that. I have to recognize that this is a super stressful time for even those people who are super strong and positive. So just allow those anxious feelings too. I hope some of this you can relate to and might help a bit. And please please know I am here for you and can talk anytime. Again, sending positive thoughts and warmest hugs to you. ❤️

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,631
    edited May 2023

    flower girl,

    Forgive me if I missed something in reading your post. You have been dx’ed with dcis but you have positive lymph nodes? You’ve had a lumpectomy but are considering a mastectomy, right? If so, a post surgical mx report will paint a complete picture, but your lx report should be fairly comprehensive.

    It is highly unlikely that you’ve had any type of metastasis. The tumor in your breast was not invasive and a single positive node may is not a death sentence. Let me be frank. I know this is worrying but you are leaping to the very unlikely worst circumstances. The chances of successful treatment are overwhelmingly in your favor so try not to create catastrophic situations where none exist. Focus on dealing with what you know for certain and stay away from speculating on things that are not likely to happen. This may not be easy but it’s worth practicing. Take care

    PS: Only your oncologist can give you a proposed treatment plan. The way someone else was treated, even if their bc seems similar to yours, may be different. This is one of those things you don’t know yet and would be very difficult to guess.

  • alicebastable
    alicebastable Member Posts: 1,933

    flowergirl1975, Mine was ilc with a micromet to my sentinel node. I didn't even need chemo. Take exbrnxgrl's advice on not jumping to the worst possible (and highly unlikely) conclusion), take a deep breath, and listen to what your oncologist recommends. And fo some fun stuff between appointments!

  • flowergirl1975
    flowergirl1975 Member Posts: 53

    Hello everyone.

    Iamnobird- Yes it does sound a lot like you and I have similar cases. I think based on my two lumpectomies I have had 4 cm of extensive DCIS removed from my breast, they also found another 1.5mm invasion as well. How early could it be caught though if its already in a lymph node? My double mastectomy is scheduled for 5/31 so I will be glad to get that out of the way. The tumor board meets next Tuesday so I will have a good idea then on what my treatment plan looks like. Did the thought of waiting 5 weeks to start chemo scare you? I think to myself that is over a month that there is cancer still possibly floating around in the body. I get that it needs to heal but just a scary thought. Another question I have…if they know your having chemo do they put the port in at the same time as the mastectomy or is that at a later date?

    Hi again DSC :-) I will be thinking of you on Tuesday . Y0ur absolutely right that you have to keep yourself busy. Its so hard when you just want to cry and google your condition all day. I have high anxiety as well. My whole life I worried I would get cancer and here I am. I see these stories of these wonderful postive woman fighting their cancer, and going through chemo and Im like how do they do that??? I want to be like that, Im stuck not wanting to leave the house and feeling depressed. Maybe it will come with time???

    exbrnxgrl- Hello. Yes that is correct. I had two microinvasions among the DCIS. Have had two lumpectomies and will do a double mastectomy due to the fact that my cancer does not seem to want to show up on MRI's or mammograms. Im being aggressive and feel good about my decision. You are 100% correct, thats what I tend to do is think worst case scenarios. I am super annoyed with myself that I do that. I try to be positive but every time I think I have this managed the situation gets worse:-(

  • flowergirl1975
    flowergirl1975 Member Posts: 53

    alicebastable- thank you. I know you guys are right….dont assume the worst. I just need reminding of that sometimes. Hugs to you all!

  • iamnobird
    iamnobird Member Posts: 229

    @flowergirl1975 I actually felt pretty certain that all cancer was removed from my body with the surgery. Plus, final pathology took over 3 weeks (they retested some stuff to verify it was HER2+) and I was in pretty rough shape for the first few weeks as the DIEP,priciedurr is a big surgery. For these reasons, I wasn’t bothered too much with waiting. Do you know if your IDC is triple negative, HER+, etc.? That makes a huge difference in treatment. For instance, they would have done Oncotype testing on mine if it wasn’t HER2+ and I might not have even needed chemo. Apparently, most tumors won’t spread until bigger than 2 cm. But sometimes, folks like you and I, have very small ones that seem to figure it out quickly. It is a bummer, but what can you do? Neither of us had cancer picked up on imaging or biopsies so that takes away some options for sure. Look, the early days were awful. I won’t lie. I, like you, always felt it was some sort of destiny to end up with breast cancer. My aunt and grandmother had it. My genetic screening was totally clear. I had no risk factors and had done everything I could to minimize risks. But here I am. I spent a lot of time rattling about feeling how unfair it was. I am still irritated. Chemo is brutal and I hate the fact my hair is falling out, etc. But, we take the hand we are dealt and I am grateful that my tumor is so small and that even with one positive node, my oncologist feels that my chances of living long and cancer free are very good.

    Anyways. I actually don’t have a port. They aren’t commonly used at my hospital (I am living in Finland) unless they are needed due to difficult veins. I have good veins and am not afraid of needles and my nurse is a whiz. So far, so good. Lots of luck to you!

  • salamandra
    salamandra Member Posts: 719

    I jumped to worst case scenarios when I got my diagnosis. I had about two weeks between getting the biopsy results and meeting with my oncologist, had not yet found these boards, had the memory of watching my mother dying from breast cancer in her 50s, and I was terrified.

    What did I do? I spent time with friends and family, and I bought a burial plot next to my mother.

    The thing is, it turned out I had stage 1 hormone positive breast cancer, and the five year survival rate is almost 100%, with long term survival rates also generally positive. I had absolutely zero urgent need for that plot.

    But we'll all die some day, so I knew it wouldn't be a waste of money. In retrospect, I think that getting that taken care of gave me the feeling of having done something related to the worst case scenario, and it did actually free up some head space for me to organize myself for the many more possible better and best case scenarios.

    If that worst case scenario is taking up head space for you, I say give it a task. But also give a task to the better case scenarios. For me, that was going for appointments to get a dental appliance that would be the beginning of a long term (5+ year) treatment for my sleep disorder, with the goal of avoiding CPAP machines as I get older.

    It was a bit odd simultaneously planning for my imminent death and for my long term quality of life, but really, that time immediately after diagnosis and before clear info and treatment will be a kind of hell no matter what. The tasks that you choose to make your body do can also send powerful messages to your brain and feelings, so it's worth a try.

    If you're not feeling up to turning that fear into action (like buying a funeral plot), then you are dealing with paralyzing anxiety, which is somewhat different from fear or pessimism. Anxiety is its own terrible thing, and the best things I have ever found to provide short term relief of short term anxiety are benzo class meds, indulgent food, and absorbing computer games. It is ok to do what works for you.

    Just don't confuse the fear with the reality - which is impossible for you to know (since you are mortal and not omniscient) and almost impossible for you to make good guesses about (since human beings are terrible at risk calculation in the best of circumstances, and even worse when we are dealing with anxiety around our deepest fears).

  • flowergirl1975
    flowergirl1975 Member Posts: 53

    iamnobird-My cancer is ER/PR +. I dont know HER results yet. Apparently there wasnt enough tissue to test with my first lumpectomy. I see in my charts they are waiting on the results for that with my second lumpectomy. My Ki-67 % was low (10%) so that seems to be good I think. I also have two kinds of cancer crib form and papillary, not sure if this is common with other woman? I am not having reconstruction right away. My concern was that this has already been going on since mid-March. I do not want to waste any more time getting a consult with a plastic surgeon, then waiting another however many weeks for surgery. I just want them off and moving forward. I imagine it will be pretty weird/hard to see myself with no breasts when the bandages come off. I will worry about that when the time comes, more important to work on saving my life! Its good that you have such a great prognosis, that alone should help you get through all the terrible stuff you are going through!!

    salamandra- I hear you. Many people have said focus on the facts, what you know. The what ifs can make you crazy.Google makes that really hard….I will say that lately I have found myself drawn more to boards like this one where you can read about people's experiences. It gives me peace of mind to know there is a whole group of us out there experiencing the same emotions and supporting each other through such a difficult time.

    Question I have that maybe someone can answer. Is stage of cancer not determined until all testing and results are in? I see my path results which is DCIS with multifocal invasion. DCIS is a grade 2, I think the microinvasion bumps me up to a grade 1. When/how is staging determined? Should I see that on my ath results somewhere?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,631

    Hi,

    I know you are very anxious. I did want to point out that if you really want immediate reconstruction, waiting several weeks to consult and coordinate with a plastic surgeon will make little difference in terms of bc. It is really not a matter of saving your life as even a grade 3 tumor is not an emergency.

    You mention both stage and grade in your question. These are different things but surgical pathology is the ultimate arbiter of stage and grade. Grade 1 is considered less aggressive as cells are closer to normal cells. Then you move up to grade 2 and 3 as the cells appear more different than normal cells.
    Although none of us can see into the future, you appear to have a very early bc which puts you very, very far from dying. Why even go there when it is very unlikely to happen?

  • iamnobird
    iamnobird Member Posts: 229

    Yes. They really can’t give an exact stage until pathology results are all complete.

    The size of my IDC is 11mm, but I have a lymph node affected so I am stage 2a. Clinical staging was Stage 0, DCIS only. So pathological and clinical can be really different


    You can use this link to determine what your stage might be:

    http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=bcpathologicstage

  • flowergirl1975
    flowergirl1975 Member Posts: 53

    exbrnxgrl- I know you are right. Maybe I will have them look in to how much time it would take to get me in. My husband is saying the same things (Im suspicious he just wants me to have boobs…LOL) I just have a sense of urgency to get them off. In my mind I'm thinking I already had one positive lymph node I don't want to give that cancer any more chances to travel around my body. I was thinking I had early stage BC but it threw me for a loop when they told me it was in my node :-( I will look in to the plastic surgeon and see what they come back with. Thank you!


    iamnobird- thank you for the link. I see what you are saying. The grade is the cancer, the staging is all the components put together to determine your treatment plan. Do you mind me asking what your treatment plan is due to the positive lymph node?

    Follow up question for any who knows. When having a mastectomy do they take more lymph nodes? If so how do they determine how many more to remove?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,631

    ”I was thinking I had early stage BC but it threw me for a loop when they told me it was in my node ”

    You DO have early stage bc! Just because you have a positive node doesn’t change that. I know that this is new to you but as you learn more you will understand that you are in an extremely favorable position. You are not in danger of dying (at least not anytime soon and likely not from bc!), you barely have an invasive cancer*and you are very early stage even with a positive node. As you learn more about bc you will come to understand this but for now, please know that none of the catastrophes you are imagining will likely happen. You are very early stage .

    *To give you a little perspective, pure DCIS is not even considered by some to be cancer, rather a pre-cancer. Your situation is a little different but still very, very treatable.

  • iamnobird
    iamnobird Member Posts: 229
    edited May 2023

    Flowergirl: My HER2+ diagnosis mostly drives my treatment. So I have 9 weeks of Paclitaxel, 3 cycles of EC chemo, 17 PHESGO shots (targeted therapy for HER2+). 15 cycles of radiation. 5 years of Tamoxifen. And 1 year of Nerlynx for HER2+ to prevent recurrence.

    And yes, my oncologist has emphasized that I am still considered early stage. The goal of chemo is curative and I have an aggressive protocol because I am healthy and do not want to do this again. I did reconstruction to a DIEP flap and am very happy I did it. I had no complications and my body looks and feels a lot like it did before. I saw the plastic surgeon the same day as I saw my breast surgeon who gave me the MRI results and recommended the mastectomy and went to surgery within 2 weeks. My timeline from diagnosis to surgery was 4 weeks.

  • flowergirl1975
    flowergirl1975 Member Posts: 53

    exbrnxgrl- You are right, this is all really new to me. I appreciate you pointing out the facts. Its very hard to understand pathology reports and what means what. From what I read the chances of DCIS-MI moving to the nodes is small, of course it happened to me though. That then sends me down the rabbit hole of what if its spread. I had to have a liver MRI today because my breast MRI showed 2 incompletely evaluated hyperintense lesions on my liver. The radiologist felt that they were artifacts, only appeared in one of a series of pictures. This was however before they knew I had a positive LN. Can I ask how you felt after your mastectomy surgery? I am wondering how long I will need off of work. I do have the option to work from home some. Just curious what the recovery time is?

    iamnobird-wow, you have a lot going on. I dont blame you. I feel the same way, which is why I decided to also have my right breast removed. I dont want to mess around with this. Im guessing I will know more of what my treatment looks like after Tuesday. My consult with oncologist is set up for June 5th. The hospital gave me a breast cancer handbook- I didn't realize there were so many surgery options. Lots to consider….