Introduction - IDC

Lolis197138
Lolis197138 Member Posts: 512
edited June 2014 in Just Diagnosed

Hi,

I am 33 and live in Toronto, Canada. This past Friday was diagnosed with in situ and invasive ductal carcinoma on my left breast.   It was also qualified as multifocal carcinoma with small microcalcification and the masses are all in the same quadrant. The biggest mass is 4cm away from the nipple. The u/s of the axillary lymp nodes showed thickened mantles raising the possibility of regional metastasis. I was told that I have heterogenous dense breast. I have a fibroadenoma on the same breast.

The right breast showed two cysts as well. 

Waiting to hear from the surgeon to discuss my treatment plan. Calling on all of you to share your experience, wait time to see the surgeon, your choice and recovery time. I would love to hear from my fellow Canadian ladies as not sure how long it would take to receive that call.

I am leaning towards double mastectomy for peace of mind but I love my breasts and not sure how I would react to being flat or having fake boobs. 

Thank you in advance for sharing your story with me.

Hugs!!!

Lola

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  • margie79
    margie79 Member Posts: 12
    edited March 2014

    Hi Lola,

    So sorry about your recent diagnosis. It sucks to be diagnosed at such a young age. I was diagnosed back in August and now I am just completing my radiation treatments. I'm 34 and have a 2 year old daughter and find it very hmm...."inconvenient" to be dealing with it now :). 

    I remember how terrible I felt when I was told about cancer. My world fell apart - for a month :). When I had my treatment plan aligned, I started to see a light at the end of the tunnel. Plus, I gotta admit, I have found tons of help on these boards. You will later see that the wait itself is worse than anything. Once you have the ball rolling, you will be able to pick your life up where you left off. Sending you warm and gentle hugs from Vancouver.

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  • Ridley
    Ridley Member Posts: 634
    edited March 2014

    Hi Lola - Sorry you are here.  I'm from Toronto as well.  What hospital is your surgeon at?  Once I had my diagnosis (my surgeon met with me to give me that), I ended up having some additional imaging and then meeting my surgeon again.  Seemed like that first month dragged on forever, unfortunately.

    There is a Calling all Canadians thread on the board that you may want to post on.  Ask away with your questions and concerns and someone will provide their experience and/or a virtual hug.

    Ridley

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thank you Ladies!!

    Ridley, I definitely check out that board. My family doctor was going to forward the biopsy, u/s & mammogram results to Prince Margaret on Friday. I am in Calgary till Wednesday and curious to know how long it took to meet with the surgeon. 

    Margie sorry to hear about your diagnosis at the same age. Hope that your daughter gives you strength. I had a miscarriage in November '13 and now this. But I am okay and I know that these boards will help me along the way. I just want the process to start.

    Hugs to you both!!

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  • Ridley
    Ridley Member Posts: 634
    edited March 2014

    Lola - I can't imagine it will take that long, but I only had my second surgery there, so my experience isn't the same.

    I also had multifocal cancer on one side (and DCIS on the other).  I had a lumpectomy to start (since all areas were in the same quadrant), but for various reasons, a mastectomy was suggested on that side, and because there was DCIS on the other side, I decided to have a bilat with immediate reconstruction using my own tissue (called diep reconstruction).  I'm three months out from my second surgery, and have no regrets, but it is a very tough and very personal decision.  There are some good threads on the board on the topic of lumpectomy vs, mastectomy and uni vs, bilat that you may want to scan.

    So much info to absorb in the first few months, but you will get through it.  This site was a lifesaver for me, as there is so much great info and always someone to help.

    Ridley

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thanks Ridley. 

    I had my mind set on double mastectomy even before I was diagnosed but not sure if I want to do the reconstruction right away. This started off as a cyst and changed into cancer in a matter of a year and am worried that the same thing will happen with the right breast as there are a couple of cysts that showed up on the u/s.  


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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    Lolis, 

    Cysts do not become cancer.  How was your left breast cyst diagnosed?  Did a doctor just assume it was a cyst or was it actually confirmed to be a cyst?  That would be the important question about your right breast.  If the cysts in your right breast really are benign, harmless cysts, then they won't develop into cancer. 

    I had breast cancer in my right breast but also had a number of benign conditions - cysts and benign calcifications and fatty necrosis and a history of fibroadenomas - in my left breast.  I had a single MX of the right breast and 8 years later, my left breast remains fine.  

    Of course every situation is different but I'm mentioning this just so that you realize that having benign cysts in your right breast isn't a reason, on it's own, to remove that breast.  You may want to have a bilateral mastectomy for other reasons but the cysts themselves are harmless.

    My recommendation is that you find out all you can about your diagnosis and your risks for your right breast before you make your decision.  If you are concerned about being flat or having reconstruction, a BMX is not something that you have to decide on at this time.  The most important thing is to ensure that you are fully and appropriately treating the cancer.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thank you Beesie. 

    I had an u/s last march and showed a cyst at 2 o'clock. The biopsy was done on the lump that has the cancerous cell and it's at 2 o'clock. I will ask my family doctor for that u/s report as I want to see if the size has changed from last year. That's why I am thinking that has changed as it is in the same spot. 

    Well the reason for DMX would be preventive, not sure if this is genetic. 

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  • Okiemomof4
    Okiemomof4 Member Posts: 54
    edited March 2014

    Lolis,

    Just FYI, my breast surgeon told me just two weeks ago that many insurance companies in the US are now not paying for prophylactic mastectomy on a healthy breast now unless you are BRCA+. That seems to be the only group of ladies who it has been shown to reduce the risk of recurrence in vs. lumpectomy or single mastectomy.  Not sure how that works in Canada....

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  • margie79
    margie79 Member Posts: 12
    edited March 2014

    Okiemomof4, in Canada prophylactic mastectomies are covered. I was really close to getting it done myself, but changed my mind after I got my Oncotype score, grade and after I found out that cutting both of them off does not really guarantee that cancer will not come back. 

    Lolis, I am sure you will know what plan of attack to take once you talk everything through with your surgeon and oncologist. They will for sure give you some recommendations and you will be able to think more clearly about all this. Bring someone with you to your first appointments and brace yourself for lots of info going your way :). 

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thanks ladies!  

    I am thinking that after DMX I would need to do either radiation or chemo depending on the lymph node status but definitely need to talk about fertility, if it is genetic (grandma died of BC) and other stuff. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Regarding the genetics - I've been told that the genetic connection of breast cancer is not common, even though we think it is if anyone else in our family had BC. My grandmother died of breast cancer when I was very young, about six years after diagnosis & double mx. Of course, that was a very long time ago, long before we had the great treatments we have now - including chemotherapies, radiation, hormonal inhibitors, Herceptin (and others), plus all the technologies for early detection and ones that tell us how much a cancer has spread. Because of this history, I pushed for BRCA testing. I would have paid for it if insurance did not - for my daughter & my grandchildren. Anyway, I was negative for known genetic factors in my breast cancer.

    Regardless of surgery choice (mastectomy or lumpectomy), I would have had the chemotherapy, Herceptin and probably the radiation (due to lymph node involvement). The surgery kicked my butt - took a very long time to heal, especially the axillary node dissection - and that was only a lumpectomy! I have been very happy with my treatment choice. My breasts look almost like before, except the one with the surgery & radiation is a bit smaller & "perkier" (less age-related sagging due to radiation????)  

    With my lumpectomy + radiation + chemotherapy + Herceptin + Arimidex, I have already lived much longer than my grandmother did after diagnosis. I am almost 10 years out, and still NED (no evidence of disease)!!!! There is no "right" choice, except what is the "right" choice in your heart.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thanks Optimistict. Congrats on you 10 year milestone. How often do you have to go for tests? 

    My appointment with the surgeon is on April 2, just one week away and will know what she will suggest. I would like to do the genetic test as my sister are young too. 

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  • Nikkito
    Nikkito Member Posts: 61
    edited March 2014

    Hi Lolis, just thought I would say hello to you. Sorry for your recent diagnosis. I'm also from Toronto and 34 years old. I have two abnormal masses, some complicated cysts and like you a lymph node in my right axilla with thickened cortex. I've also decided going forward that if further treatments are needed that I will go to princess margaret. Right now I'm waiting for my biopsy. It's feels very surreal.

    Although none of us wants to be here, it was nice to see a message from another Torontonian! Hope that your night is good and I wish you all the best for your upcoming appointment.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    I get a mammogram once a year, just like before my diagnosis - except that it is a "diagnostic" mammogram as opposed to a "screening" one. I have a bone density scan every two years, for double reasons: my age plus my hormonal blocker that can weaken the bones (so far, so good).

    I see my oncologist every 4 to 6 months. He does tumor markers, Vit D levels & CBC, etc. In the first five years, I had breast MRI (both breasts) & gamma-imaging of both breasts - but I'm not getting those any more. Any other tests are only done if there is a cause for concern. Once, I had a brain MRI due to (I think) a chemo-brain moment that freaked me out - all good. And I had a liver scan (or MRI) once when my blood tests done for pre-surgery (scar recission & port removal) came back with slightly abnormal liver values. Again, everything checked out OK. Both oncologist & breast surgeon (who reviews mammogram results) do physical exams of both breasts.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Thank you Nikkito and sorry that you founf yourself here. 

    I am looking forward to the appointment and it's a step closer to beating this thing!!

    I really hope that you biopsy comes clean and that it is benign!!! Fingers crossed!!! 

    Optimistic sorry about the brain scare, I would be freaked out if my brain was in any sort of danger. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Well, the good thing about the brain MRIs is that they showed that there was NO problem! Before the MRI, I was definitely freaked out. I couldn't remember how to do a procedure I had done many times before (scoring a particular psychological test) - kept looking at it while thinking "I don't know what the H@## to do with this!"   I was also transposing numbers often, and for the first time in my life, had trouble with spelling. I do think this was due to some "chemobrain" effects, but that seems to be better.

    My husband is a neuropsychologist, so he has been researching chemobrain. It doesn't affect everyone, we don't know how many are affected  - but it tends to show up as impaired working memory. Working memory can be helped by "exercising" your brain - with things like cognitive retraining or working your brain. There are many online programs like Brain HQ & Lumosity. I'm also a trainer for Cogmed, which is a cognitive program we offer online through our office (originally developed for ADHD, and still used for that). I'm much better now.

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  • Nikkito
    Nikkito Member Posts: 61
    edited March 2014

    Thanks Lolis. Hope that your weekend is good. My Cd and report was dropped of at Princess Margaret on Friday and I feel good about going there. Spoke with them Thursday and the lady I spoke with was great. I'm just waiting to hear when my appointment will be this week. Found out that lymph biopsy is similar to the breast biopsy, so that's good. Kinda feeling a bit scared though. It's been such an emotional roller coaster of a week! Again I hope all goes well for you Wednesday! 

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited March 2014

    Glad to hear that the cd got dropped off at Princess Margaret!!

    I got mine but it only had pictures of the biopsy and the surgeon wants the mammogram pictures. I am in Montreal tomorrow so will have to remember to call and ask for the pictures again. I can't wait till Wednesday. I changed my mind on what kind of surgery I want to have and I feel better about it. Will see what the surgeon says and at this point I feel like I can't escape chemo but whatever is need and hope she doesn't say that I have to wait 5-7 years to get pregnant but then again, don't think she will have all the info available on Wednesday. 

    Have a wonderful sunday ladies!!!  

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  • Nikkito
    Nikkito Member Posts: 61
    edited March 2014

    Hey Lolis, it's good that you are seeing your surgeon Wednesday!. Yes I'm glad that they have everything and now just waiting to find out when I'm going in. Kinda struggling with my anxiety, so the sooner the better!.I'm fortunate to have one son who is nine and I have no plans to have another in the near future, but fertility would also be something that I would want to get more information on.Hope that you had a good day!.

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  • Nikkito
    Nikkito Member Posts: 61
    edited April 2014

    Hi Lolis,

    Thought I would check in with you and see how your appointment with the surgeon went? I hope all went well and you got the information you needed and are feeling comfortable with the next steps. Will you be having surgery first?

    I have an appointment with the oncologist @pm on Tuesday. I'm feeling pretty anxious, not knowing what to expect for that appointment. I thought maybe you could let me know how it was when you went.

    Have a good day.

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited April 2014

    Hi Nikkito,

    How are you? 

    The appointment went well. She said that I have to do chemo, surgery and possibly radiation. I have to go for all these tests, bone scan, CT scan, mri and u/s of the lymph nodes to make sure it hasn't spread and get more info about the cancer. I did the bone test on Friday. My medical oncologist called to see me on Tuesday at 2pm. But I know that they do bloodwork and then I will see the oncologist at 3pm and they want me to bring a list of all the meds (even over the counter meds i.e. tylenol etc). I am assuming she will go over the process and I want to ask about taking this medication to protect my ovaries during chemo. Also, will ask if I can get a port for the chemo instead of PICC line

    Are you going to princess Margaret? I have to go to Oshawa since I live in Ajax. I am hoping to get my radiation treatment (if even any) at princess margaret.

    Have a good weekend.


    Lola

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  • bluepearl
    bluepearl Member Posts: 961
    edited April 2014

    Lolis: At your young age, multifocal etc. please request a genetic test as you may carry a gene and if so, a mastectomy (double) would be very appropriate . You would be high risk. I don't know your stats, but also ask for an OncotypeDX test which I think they pay for in Ontario.....even with node positive patients. If not, at least know your Ki67 (poor man's oncotype test).  If you DO carry a gene, you might want to consider very tight survellience of your ovaries.....the two are related. I am hoping you have the very best results...too young to be seeing this.....but it seems to be getting more common!! (((HUGS))))

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited April 2014

    Bluepearl, thanks for the tip. I asked for a genetic test and they did the bloodwork last Wednesday and the doctor mention the surveillance of ovaries but she mentioned that I would need surgery of the ovaries around 40 if I tested positive. 

    I don't have any stats yet, just that the bigger lump has both in situ and IDC. Going for CT scan on tuesday and MRI on saturday.

    What's the oncotype dx? 

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  • Ridley
    Ridley Member Posts: 634
    edited April 2014

    hey Lola. Oncotype dx is a test that analyzes the genetic make up of your cancer.  You receive a score that provides both an indication of whether chemo will be beneficial and your risk of distant recurrence (assuming you take tamox for five years).  They do this test in Ontario if you meet the criteria (your cancer has to be er and pr positive and her negative, etc.)

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  • Nikkito
    Nikkito Member Posts: 61
    edited April 2014

    Hi Lolis, I'm hanging in. How are you? I'm glad your appointment went well and now you know what the plan is. Did they explain why they've chosen chemo for you first before surgery?

    Yes I'm going to Princess Margaret. I live downtown west so it's pretty close which is good. 

    You mention medication to protect your ovaries, what medication is that? I don't think I would pursue fertility options such as freezing eggs, but if there was something that could still provide some protection that would be good. The most important is dealing with the issue at hand, but it would still be difficult to close that door entirely. In term of port or picc, it seems like many prefer having the port.

    Big hug to you! You are going through a lot this week and I will be thinking of you. Hope that you have some good support around you. I go Tuesday morning to the oncologist. I'm supposed to bring a list of meds too. I'm going to work today on my list of things to ask because I know that my brain will feel like mush when I walk in there.! Hope that your day is good. 

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited April 2014

    I am good Nikkito.

    They want to do chemo first because the u/s that I did on the lymph node wasn't 100% clear if it had spread so they want to use it a preventive measure. I haven't received a confirmation as to when I should go for another u/s but I hope it is soon. Even if the lymph nodes are clear the surgeon said that she wants me to go for chemo but perhaps after the surgery. 

    I can't remember the name of the medication used to protect the ovaries but I think I saw it on young survival coalition website. 

    Freezing the eggs might be an option for me as I don't have any kids yet. I am seeing the doctor at the fertility clinic tomorrow morning after my CT scan and then oncologist at 2pm. 

    Yes, I have great support and my husband has been wonderful.

    I don't really know what I should ask the oncologist but for sure need to find out the name of that medication. 

    Good luck tomorrow!!! 

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  • Nikkito
    Nikkito Member Posts: 61
    edited April 2014

    Lolis, wishing you good luck too.

    Could it be Lupron that is used for the ovaries? Haven't really investigated that much. I think if I didn't yet have any children I would also pursue possible egg freezing. Good luck with that tomorrow.

    I might be in the same boat in terms of chemo first if it is confirmed c, (though I know it is so individual)because it looks like I have the possible node involvement as well. 

    Hope all goes well for you tomorrow!!

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited April 2014

    Good luck to you too Nikkito!!! Hope you receive better news!! 

    I am hoping to that the egg freezing can happen before I start chemo but I doubt it as I am mid cycle and have follow up appointment with surgeon next Wednesday and if she has all the results I might start chemo as my new cycle begins :-(.

    yes lupron is the name of the medication. I will ask both the fersitility specialist and oncologist about it. 

    Keep me posted. Hugs!! 

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  • Nikkito
    Nikkito Member Posts: 61
    edited April 2014

    Hi Lolis, Thought of you today. Hope all went well with your appointments/tests. I actually was able to read your message this morning before leaving for my appointment and it gave me a boost, so thank you! Since the fertility issue is important to you I suggest talking to your mo and surgeon about it. Can you maybe give them a call or send an email prior to your next appt. I'm not sure what they would suggest, in regards to the start of chemo and the timing of your cycle, but I certainly think it's worth discussing with them. To let them know your concerns and to get more information so that you feel you have as much info as you need to be informed and make decisions that feel good for you.

    I had my appointment with the doctor. She was great, felt very comfortable with her. And I came away feeling calmer.

    I have another scan this Saturday and they will also do biopsies of the areas they need to. It seems I have very "active" breasts. She examined me and found two more spots that weren't noted on the original report. Seriously! : / Hope they turn out fine. I have an appointment booked for a week after for the results. Keep calm and carry on. Easier said then done sometimes, just looking forward to having the final results.

    After a chilly damp start It turned out to be such a beautiful spring like day! Hope you have a great night and check in when you can and let us know how things are going x

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  • Lolis197138
    Lolis197138 Member Posts: 512
    edited April 2014

    Good Morning,

    How are you Nikkito and you ladies? 

    This week was a busy one. I did CT scan on. Tuesday morning, fertility clinic and MO that afternoon and the radiation oncologist yesterday. 

    I was so tired on Tuesday and a bit down, when I think about the possibility of not having kids. The cost of IVF and meds are a bit high for us now (we bought a new house not too long ago) and the success of 40% of live birth got me down. Also there could be chance that I might get pregnant naturally. We can't adopt. :-( 

    The MO appointment went well. I liked her, she explained everything so calmly and I feel comfortable with having my chemo treatment with her. I could either have the 6 or 8 treatments depending if it is ER+ 

    Not to impressed with the radiation onco. I asked him how the radiation would impact the reconstruction surgery and he said that it would and the tissue expanders could make it a bit more confusing for them but the radiation can still go forward.

    Both the MO and radiation onco think that the tumor is very mobile so the chances of it being attached to the chest wall are very minimal and that the nodes didn't seem enlarged when they touched them. Which sound like a good news.

    Next Wednesday I am meeting with the surgeon again and thursday meeting the MO & radiation onco on Thursday. 

    Have a good Friday!!


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