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Invasive Lobular Carcinoma

Invasive Lobular Carcinoma

Posted by Susanb on Dec 3, 2019 3:48 pm

I have been diagnosed with stage 1, grade 2 mammary carcinoma. I am seeing an oncologist for the first time tomorrow. I had a lumpectomy 6 weeks ago with clear margins.  My pathology reports 5% ductal and 95% lobular so I think they will just consider it lobular. I also have LCIS. My question is because I have this type of “sneaky” cancer will an MRI be ordered? Is an MRI standard when diagnosed with ILC? I also have very dense breasts >75%. I live in Ontario. I have read that it is common to have this type of cancer in both breasts and I have only had a screening mammogram on my good side this year and I am afraid something else may be hiding in there. Should I be pushing for an MRI? Would there be someone here that could share their experience when diagnosed and treated for invasive lobular carcinoma. 

Re: Invasive Lobular Carcinoma

Posted by Veryhappilyretired on Dec 3, 2019 10:18 pm

Hi Susan:
I was diagnosed with invasive lobular cancer in August of 2018.  I had my original screening, ultrasound and biopsy in a smaller centre and then went for consult in London, Ontario. There they did a new biopsy and mammo on both breasts (with more sensitive equipment) even though only one breast had shown cancer. This confirmed that only one breast required surgery. I had a lumpectomy and radiation. An Oncotype DX test showed that I wouldn't benefit from chemotherapy but would have to take anastrozole for 5 years. Fast forward to a year later and I had mammogram on both breasts which showed no cancer although I have some mild swelling going on related to the radiation treatment. In your case I am not sure why they wouldn't be checking both breasts. I definitely understand why you want to ask your doctor for more imaging.


The following info comes from the American Cancer Society website: "Most experts recommend that women who have had breast-conserving surgery or BCS (sometimes called a partial mastectomy or lumpectomy) get a mammogram of the treated breast 6 to 12 months after radiation treatment ends. Surgery and radiation both cause changes in the skin and breast tissues that will show up on the mammogram, which might make it harder to read. The mammogram done at this time serves as a new baseline for the affected breast. Future mammograms will be compared with this one, to help the doctor check on healing and look for signs that the cancer has come back (recurred). You should have follow-up mammograms of the treated breast at least yearly after that, but some doctors may recommend that you have mammograms more often. You will still need to have routine mammograms on the opposite (untreated) breast as well."  italics mine

It would be good for you to have the assurance of knowing that everything is just fine. 
 

Re: Invasive Lobular Carcinoma

Posted by FireflyNS on Dec 4, 2019 3:59 pm

Hi Susan, I was diagnosed with mixed ductal/lobular carcinoma and my surgeon did order an MRI before my surgery, due to the increased likelihood of there being more than one area of cancer and a higher risk of having cancer in both breasts. My MRI led to a biopsy on my other breast, which was thankfully benign. It's definitely something to ask your oncologist about. One of the things to keep in mind is that MRIs do generate a lot of false positives - things that then have to be investigated and turn out to be nothing. The way my nurse put it was they pick up a lot of things that aren't cancer. I still thought it was worthwhile.

Re: Invasive Lobular Carcinoma

Posted by Susanb on Dec 5, 2019 6:21 am

FireflyNSVeryhappilyretired‍ thank you both for your replies. I saw the oncologist yesterday for the first time. He will not order a diagnostic mammogram, us or MRI. I tried to explain to him that I only had a screening mammogram on my good breast this year and would feel more comfortable if I had additional tests as lobular cancer has a higher chance of being multi focal or in both breasts. I have very dense breasts also (>75%). My pathology also shows LCIS. He agreed that I was at higher risk but he flat out refused any additional tests. Said I need to go back to my surgeon to talk about this but that they do not like doing additional tests because there can be false positives and he just wants to focus on the problem at hand. He compared me to an 80 year old wanting a mastectomy ( my mom’s very active best friend just had a mastectomy at 80 and she is doing very well). I don’t know what to do from here. He is not doing the Oncotype test because he says chemo does not work for this cancer. My stage is 1Ac. So I said all the more reason to make sure it is not in the other breast. I am going to be starting 16 radiation treatments and hormones. He made me feel that I was being unreasonable asking for the other breast to be checked.  If mammograms don’t detect lobular cancer then why is that the recommended screening tool? He didn’t seem to know much about this type of cancer, he was just talking generally and not differentiating between lobular and ductal. I don’t know what to do next. I feel like I just want to give up, finish treatment and get on with life but I don’t think I will feel satisfied until the other breast is checked. Any advice you can offer about this type of cancer would be really appreciated. 

Re: Invasive Lobular Carcinoma

Posted by gogirl on Dec 5, 2019 11:33 am

I was diagnosed with invasive lobular cancer in October 2018.  It was a 7 cm lump in my L breast  stage 3 that literally appeared  overnight and I found myself.  It was so big you couldn’t miss it.  I have had yearly mammograms for years, as I am on the Ontario screening program which is yearly if you have dense breasts.  The mammograms were clear every time. This lump was checked via a mammogram and an ultrasound, then a biopsy and an MRI after that. My surgeon then ordered an MRI for the R breast just to be sure it was OK, thinking it probably would be fine.  The result first came back it was OK then I got a call saying they made a mistake and it showed an 8 mm lump, stage 2 ductal cancer!  I was stunned!  The treatment for the 2 cancers is different.  I had 4 months of chemo to shrink the tumours, which it did incredibly on both sides.  Then I was recommended mastectomy L breast and lumpectomy R breast.  I opted for double mastectomy to avoid symmetry issues and to avoid fear of recurrence in the R breast since I have dense breasts.  Then I had  3 weeks of radiation L breast only, as oncologist said stats for the other side indicated radiation would make little difference.  For the lobular cancer I am on herceptin for a year, which ends Feb/20, and for the ductal I take tamoxifen for 5 years .  It’s been 6 months so far.

you have dense breasts.  Research indicates mammograms miss picking up tumours on a regular basis.  After what I have gone through and knowing what I know now, i would insist on an ultrasound as a minimum.  Mammograms are a waste of time on dense breasts.  I would even pay it myself. If they refuse I would try another province or the US.  I feel uncomfortable about your oncologist’s understanding and attitude.  I got my oncologist from my surgeon’s recommendation.  Could you speak to your surgeon about seeing someone else?  One thing I’ve learned is you have to push for yourself or you will be lost in the system.  That doesn’t mean yelling or anything, but be insistent.   With dense breast tissue you need to be concerned.  We are being diagnosed unnecessarily late.  In my case I have to thank the lobular cancer for finding the ductal cancer before it unknowingly grew to stage 4!!  Thanks for reaching out.  I read this site regularly, although never posted.  It is a great help

Re: Invasive Lobular Carcinoma

Posted by Lianne_adminCCS on Dec 5, 2019 12:28 pm

Susanb‍ 
If I am reading your post correctly, it sounds like you feel like you are not being heard. Perhaps you might feel better with a second opinion. Getting a second opinion is not uncommon and can be for many reasons.
I am going to link you here to a section on cancer.ca on second opinions.   http://www.cancer.ca/en/cancer-information/living-with-cancer/your-healthcare-team/second-opinions/?region=on
I hope it helps. Regardless of what treatment plan you end up going with, you need to be comfortable with it and make the decision with as much knowledge as you need to come to an informed decision.
We cannot offer medical advice but talking to another medical professional may put your mind at ease.

Wishing you well as you navigate this process

Lianne

Re: Invasive Lobular Carcinoma

Posted by ashcon on Dec 5, 2019 12:40 pm

gogirl‍   Well said!!!! So glad you are a regular reader on this site - but am double glad you posted this post!

Susanb‍   I would agree with the others and explore how to get additional imaging done (even if at your own expense) to get peace of mind.   Going back to your surgeon may not be a bad idea. I live in Ontario as well, and my surgeon proactively  ordered an MRI on both breasts halfway between my chemo treatment - even though the cancer was just in the R breast. He wanted to get some baseline images and wanted to ensure the chemo was doing its job. (which it was)
Another thought...we often forget that our GPs are part of our medical team, even during our cancer treatments.  I can't recall if you indicated if your GP is someone you like & trust, but you could approach them with your request for additional screening, if the surgeon doesn't come through for you.  You could explain your situation and your concerns, and if they can't secure an MRI for you, then they could probably make a case for getting you an US at least. 

 As gogirl says, you don't have to be a yeller or screamer to have your voice heard, but don't give up self-advocating.

Re: Invasive Lobular Carcinoma

Posted by Susanb on Dec 5, 2019 1:27 pm

gogirl‍ and ashcon‍ could I ask what hospitals you are at? Thank you everyone and yes I feel like I am not being heard.  I feel like giving up trying to get through to them that this is lobular not ductal. The oncologist examined me yesterday and said “ you would feel a rock hard lump if something was there” I said invasive lobular carcinoma does not form that way, he just brushed me off. I have very dense breasts and LCIS. I guess I will call and go back to my surgeon and try one more time. I asked the oncologist yesterday if he would sign the requisition for me to go to buffalo for the MRI. I will gladly pay. He flat out refused. I think everyone is right I should seek a second opinion. I feel emotionally tired and I don’t feel I should have to fight for this but I will. I will be very angry with myself if I just let it go and there is something else lurking in there. Thank you all for the support, I am feeling very alone but glad I have this forum to release my frustrations :-)

Re: Invasive Lobular Carcinoma

Posted by gogirl on Dec 5, 2019 3:04 pm

It is true the healthcare system can be very frustrating.  I can't begin to tell you how many times I was horrified and ranting and raving at home.  My husband was ready to go right after them.  It was so bad I had to tell him to knock it off or he would make things worse.  I really worried about the state of our marriage,for awhile, as he was so worried about me and the shortfalls we kept running into in the system, and there was I understanding totally his worry as I felt the same way.  But I felt, still do, that you can't rant to the healthcare guys because they have the say in the end.  Last Christmas, Dec 23 I was admitted to the hospital for 12 days due to a fever.  I had terrible, terrible mouthsores, plus shingles it turned out ( even though I had had a shingles shot!)  I really lost it for a few days, being Christmas, and I had booked a couple of nights in a hotel to put some relief into our lives, and I had to cancel it.  My husband really was so upset I felt I had to do something or in addition to my own horrible situation, I would have a marriage problem too, created by all of this.  I had a long inner talk with myself when he wasn't there visiting, and I managed to change my extreme frustration with the system and the changes in my life, along with panic and fear, into more of a decisive resolve to get hold of myself and resolutely deal with what I still consider unacceptable , calmly and vigilently.  My suggestion to you is not to give up.  It is your life after all, and do not let anyone feel you should give up. Get another oncologist from your surgeon, and if that doesn't work maybe the surgeon would have other ideas.  There is also your family doctor who could refer you to another oncologist.  I have a friend who had to deal with an unhelpful oncologist a number of years ago, and she did get a different one.  Her first oncologist was actually glad to be rid of her because he didn't like the disagreements. After all, there needs to be trust in the doctor- patient relationship. I can tell you there is no way I could accept not knowing the condition of the good dense breast.  Mammograms are the accepted procedure for both lobular and ductal cancer, but in both cases they do not pick up the tumors in dense tissue.  Why does Ontario keep using mammograms for us?  Good question.  Big flaw in the system.  MRI's are the best detectors, but as an alternative ultrasounds may be cheaper and do pick up tumors.  Stay strong, take your control back, and know that you are in one of the most important fights of your life and you can do it.

 

Re: Invasive Lobular Carcinoma

Posted by ashcon on Dec 5, 2019 3:55 pm

Hi Susanb‍ 
It's funny (NOT!) that it is when we are at our weakest moments that we must don our gloves and fight for what we know is important to us.  But you said it....you will regret not doing so. 
For what it's worth, I was (am) treated in South West Ontario at Grand River Hospital.  But I don't think that matters. Sometimes I think the variance in treatments we get from our doctors (and nurses, too!) is simply chalked up to the fact that they, too, are human. And they, too, have bad days like the rest of us.
With that in mind, it is really important to have a positive, trusting relationship with your doctor.  Your life is in their hands.  In one appointment I had with my oncologist, I was honest with how I felt our relationship was going at one point. I said "Last time we met, I felt rushed, and I felt I didn't get all my questions answered. I know you're very busy, but I would feel more at ease if all my questions and concerns were addressed when we meet. How can we fix this? Would it help if I wrote down my questions ahead of time for you to review before we sit down?"
When I took this "partnership" approach, she chilled out and became a real aly -  someone that really had my back later when I needed an intervention with the surgical team.

There are standards of care when it comes to screening, diagnosis, treatment, surveillance, etc.  This page from Cancer Care Ontario has some good information and may be of help for you.
CCO - Guidelines and Advice/Modality of Care/ Imaging/Breast

gogirl‍   I love this:

I managed to change my extreme frustration with the system and the changes in my life, along with panic and fear, into more of a decisive resolve to get hold of myself and resolutely deal with what I still consider unacceptable , calmly and vigilantly.