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Topic: Just diagnosed. Options not discussed..

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Mar 3, 2020 01:53PM

SingingCat wrote:

I'm in the Uk, and had excision of a large benign tumour in my armpit at the end of Jan. When I met with my breast surgeon for review 4 weeks after surgery, he told me that histology showed LCIS. He said it was nothing really to worry about & that I would need annual mammograms. That was it, no follow up appts. I then googled (!) and found there may be more to consider than annual mammos.

I am 43 yrs old. No family hx of breast ca.

Should I just cool my heels & be happy with the annual mammograms plan? Or should I go to my GP and ask for more? (And what more?)

Thank you x

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Mar 3, 2020 02:28PM rtucker wrote:

Hi singing cat!

I am new to this forum but I was diagnosed a year ago with LCIS and I am on Aromasin to lower my risk factor too. I am 59 but on surveillance every six months. Having an MRI done in April and getting genetic testing done because I am Jewish but know breast cancer in my family history. Then 6 months will be another bilateral mammogram. I also see the oncologist for my medications. It can be stressful you will get use to it. Good Luck!!!! R T

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Mar 3, 2020 02:39PM Moderators wrote:

Hi SingingCat, and welcome to,

We're sorry you find yourself here, but we're glad you've found us. As you can already see, our Community is full of helpful and supportive members always willing to offer advice -- we're all here for you!

While you wait for some other members to weigh in with their experiences, you may be interested in checking out the main site's section on LCIS (instead of googling!). Hopefully this information can help you bring your concerns to your doctor and get a plan in place that you'll feel better about.

--The Mods

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Mar 3, 2020 02:50PM Ashs4u wrote:

Hi Everyone,

I am new to this and Breast Cancer, I just had a Mammo and ultrasound on Feb.28th 2020, the onco. said I have breast cancer and now waiting for a Biopsy to be done March 17th ,2020, I have no clue whats going to happen or whats next, I guess when I speak to our family dr. this Friday ,she will answer all my questions, but if anyone could offer advice ,I sure would be THANKFUL !! I am waiting until after Biopsy to discuss with family, only my husband knows.

p.s. I am TERRIFIED !



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Mar 3, 2020 03:23PM rtucker wrote:

Hi Ash,

You stated you have breast cancer but you didn’t have a biopsy done usually the radiology and a surgeon wait for a definite answer before they tell you anything. I had an two biopsy’s one from radiology and surgery to take out the tissue area to confirm it was just LCiS or any type of lumps or cancer. Rh

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Mar 3, 2020 03:41PM Ashs4u wrote:

Yes rtucker, I guess I am nervous as a cat! But the oncologist who is head of the whole building ,medical team etc. where I had my mamo and ultrasound done came to me and said to me she believed I have breast cancer from the lump in my left breast and in my armpits, so now I go for a biopsy to find out what type and etc. I am new to all this so I do not understand it all, I am trying to remain positive...……..that's all I know other then my family dr. will speak with me on Friday !

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Mar 3, 2020 03:42PM Ashs4u wrote:

also Thankful for any info and friendships and any advice!!

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Mar 3, 2020 04:15PM Salamandra wrote:

Hey Ashs4u,

The beginning is so difficult. It is absolutely nerve wracking waiting to for information to dribble in. And then even when you get some, there usually comes some other information to wait for next.

All I can say is

1) Hang in there and do what you need to get through this time. This is the time to use all your coping mechanisms, and don't be reticent to ask the doctor for something to help with the anxiety too. The emotional component of this journey is just as real as the physical component and can be very impactful.

2) There is a very strong likelihood that you'll be fine for a long while, even if you had a higher stage cancer. But most cancers first detected by routine screening are actually early and low stage, and are very treatable, with an extremely strong likelihood that you'll be fine in the long term.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Mar 4, 2020 03:15AM SingingCat wrote:

wow, how are you doing with it all? It sounds like a lot of surveillance, I hope it feels reassuring rather than stressful?

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Mar 4, 2020 03:17AM SingingCat wrote:

I’m afraid I don’t have advice other than make sure you talk to people close to you & get support! And I wanted to wish you all the best xx

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Mar 4, 2020 03:24AM SingingCat wrote:

Thanks Mods, that’s helpful. I want to understand more about risks and why some ppl diagnosed with LCIS have more monitoring & treatment.

I used the IBIS risk calculation tool and that suggested a 20 year risk of 12.5% and a lifetime risk of 56% of developing breast cancer. The guidance seems to be that if your 10year risk is over 10%, genetic counselling is worthwhile. I’d really welcome anyone’s thoughts on this as if I ask my GP about it I want to be informed.

I’ve read that the IBIS can overestimate risk ?

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Mar 4, 2020 07:46AM Beesie wrote:

Not an LCIS person here, but until you hear from others, I think there are two reasons "why some ppl diagnosed with LCIS have more monitoring & treatment".

First is that there is a lot of uncertainty about LCIS and the cancer risk that it confers - I've seen figures ranging from 20% to 40%, depending on the study and the article. As a result, some docs choose to be aggressive in their recommendations while others are more conservative, depending on which risk figures they believe.

Second, and probably more to the point, is that some people are very risk averse while others are less so. The average lifetime breast cancer risk is 12.5%; for some women, having a 20% risk means "take 'em both off now!" while someone else might be okay with regular annual screenings. And of course there are all the options in between (endocrine therapy, enhanced screenings), which is where most people land.

The following thread about IBIS is interesting. The most recent post is over a year old, and I know that they update IBIS regularly, so the discussion might not be completely relevant to the current version of the model. But there is a lot of discussion here about some of the inconsistencies in the results that people here have received:

Topic: Tyrer-Cuzick IBCIS risk assessment questions
Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 5, 2020 10:28AM - edited Mar 5, 2020 10:38AM by Lea7777

Hello Singing Cat,

A diagnosis of LCIS can send you reeling at first. But you have plenty of time to explore options of what to do or not to do. No urgency.

"Should I just cool my heels & be happy with the annual mammograms plan? Or should I go to my GP and ask for more? (And what more?)"

I'm in your situation and I personally did more. But one of the options provided to me by the surgeon who excised my LCIS was "nothing really to worry about & that I would need annual mammograms. That was it, no follow up appts." I'm in the US but I have a travel acquaintance in the UK who is a radiologist and he emphasized not doing anything drastic for LCIS and suggested I NOT take the drugs. He also reminded me to do my own monthly breast exams.

After a lot of research and trial and error with several of the anti-estrogen drugs, I settled on one and am taking it. Most women (depending on the particular study consulted, at least 70%) do not take drugs for the condition we have. At 43, if you are pre-menopausal, the only anti-estrogen drug available for you would be Tamoxifen. Last year studies came out showing that a low dose of 5 mg of Tamoxifen was as good as the normal 20 mg dose in reducing breast cancer risk. Good news for you, if you go the Tamoxifen route.

I get an MRI on an annual basis, 6 months after the mammogram, so I am being tested 2x/year, every 6 months. By the way, I make sure I get the 3-D Tomosynthesis mammogram, which has higher resolution.

The IBIS breast cancer risk assessment model has been mentioned here and if you go to a high risk breast clinic, Singing Cat, it will likely be part of your consultation. I see you have already run the numbers and come up with 56%. Every "breast professional" I have been in contact with--and it is over half a dozen--has explained this model way overestimates risk. When you mention going to your "GP to ask for more," your GP may not be all that informed on this unique condition. They may refer you to a high risk breast clinic/specialist.

If possible, I do think you should get genetic testing to see if you are at high risk genetically. That info can help guide you in what to do or not to do. I did pay for the genetic testing and am glad I did. It showed no genetic predisposition to breast cancer.

Best of luck to you and this is a good forum for info and support.

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