1. < Breast Cancer

Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

kstar077 | @kstar077 | Jan 29, 2024

I want to have mris and ultrasound of my breast from now on but I do not want the dye with mris. I will try to have my surgeon and oncologist order it without dye. The dye is not good for you.

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2 replies
kayhaun | @kayhaun | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
@kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

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I had same experience. Very large lump not detected by mammography. I saw it. Lymph nodes involved. Left breast. Had mastectomy. Am taking AI and having 5 wks of radiation. No metastasis shows on scans after surgery. I too will have only MRIs from here on.

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Nanny23 | @nanny23 | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
@kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

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I had the double mastectomy so I would not have radiation. Radiation on 2 breasts after chemotherapy would have been too much to handle. The doctors I went to earlier did not take the lump out. They watched it become cancer. After it was found in both breasts I went to Sloan Kettering in N. Y. city. They specialize in Cancer only.

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Nanny23 | @nanny23 | Jan 29, 2024
In reply to @kstar077 "I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92%..." + (show)
@kstar077

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

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My cancer did not showon mammogram either. Lobular Cancer doesn’t showon a mammogram I had to have a double mastectomy cause I had a different type of cancer in my other breast. I didn’t want it coming back. Went to Sloan Kettering in Manhattan. I am cancer free 21 years. Thank God!

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kstar077 | @kstar077 | Jan 29, 2024
In reply to @nanny23 "I went to Sloan Kettering after my doctors watched a lump I has in my breast..." + (show)
@nanny23

I went to Sloan Kettering after my doctors watched a lump I has in my breast turn into cancer. If you have cancer go to Sloan.

Jump to this post

I live in california. Where is Sloan? I had breast cancer 13mm in left breast. 92% chance will not come back had lumpectomy. Margins clear. Lymph nodes clear. Did not show up on mammo. Ì felt lump and had ultrsound and showed up on mri. Did not show up on ultrasound til I pointed out felt lump. Opted not to have radiation nor hormone blocker. Will only have mris from now on and ultrasound. Mammo did not show cancer.

REPLY
3 replies
Nanny23 | @nanny23 | Jan 28, 2024
In reply to @casbc "How does one find the top Invasive Lobular Carcinoma Doctor in the USA?" + (show)
@casbc

How does one find the top Invasive Lobular Carcinoma Doctor in the USA?

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I went to Sloan Kettering after my doctors watched a lump I has in my breast turn into cancer. If you have cancer go to Sloan.

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2 replies
casbc | @casbc | Jan 28, 2024

Thanks. All good points to consider. I live in S. Florida and since Lobular Carcinoma is at the bottom of the research list, I am looking to consult someone who might be more on the edge of the research.

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Mentor
Laurie, Volunteer Mentor | @roch | Jan 28, 2024
In reply to @casbc "How does one find the top Invasive Lobular Carcinoma Doctor in the USA?" + (show)
@casbc

How does one find the top Invasive Lobular Carcinoma Doctor in the USA?

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casbc | @casbc

All of us want to have the best and there are many excellent doctors. Luckily I live in Rochester, MN so my choice was easy.

If I had to pick someone at different locations, here are few things I would consider:

1. It is not just one doctor, you want to go to a clinic that provides a team that coordinates your care; oncologist, surgeon, radiologist, etc…
2. Location, though you may be willing to go anywhere for care, think about logistics. If just starting treatment it is many appoints and follow up. Want to go somewhere that is convenient.
3. Insurance, once select a few to follow up on, make sure they take your insurance.
4. Wait time for first appointment, some places are very busy.
5. It is OK to get 2 opinion.. If see one doctor and want to get 2nd opinion, it is OK.

American cancer society web site has article that might help:
https://www.cancer.org/cancer/managing-cancer/finding-care/where-to-find-cancer-care/choosing-a-cancer-doctor.html#:~:text=Choose%20a%20doctor%20who%20has,or%20accepts%20your%20health%20insurance.
Laurie

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casbc | @casbc | Jan 27, 2024

How does one find the top Invasive Lobular Carcinoma Doctor in the USA?

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2 replies
maggieb892 | @maggieb892 | Jan 19, 2024
In reply to @sedonadreaming "Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with..." + (show)
@sedonadreaming

Sadly, I joined the ILC statistics on 12/27/23. Since meeting with the oncology surgeon and with the results of MRI, node ultrasound, genetic breast marker panel, I am finding myself less and less confident that I would ever find peace with a lumpectomy and combine that with my aversion to radiation, I am left exploring double mastectomy (because I am not doing one and then finding out later that I need to do the other).

Why is this so darn hard? I had convinced myself to just suck it up and do the lumpectomy because it's easier recovery and "radiation should be pretty easy"...easy to say for someone who is not having to contemplate it. The surgeon said lumpectomy would absolutely be an option and that if I decided anything "crazy" he would tell me, but supports my decision. What is "crazy"?

Today I've spun 180 degrees. My gut just keeps telling me that the correct move is just to free myself of the most breast tissue I can, even though it's not a guarantee because to do less would never buy me peace of mind.

Drivers for this radical change in thinking stem from not wanting to ever go through this again, if at all possible, fear that ILC will affect my left breast, if it hasn't already (because why would I believe anything the imaging that missed it in the right for so many years states), fear of doing lumpectomy/radiation and suffering long-term effects from the treatment, another missed tumor that metastasizes to far off organs like the GI tract or peritoneum, distrust that despite post-lumpectomy treatment, that there was missed cancer left lurking, considering what my state of health may be in 5-10 years when I might face mastectomy if there's a recurrence (no way to know, but it did enter my mind). Pros for lumpectomy, in my mind, just amount to less recovery time and less life disruption at this moment in time. The cons seem to outweigh the pros for me, when I think it through, despite the relatively non-statistical difference in life expectancy/recurrence from one surgery to the other (based on the small groups that have been studied as compared to other types of breast cancer).

As I was busy convincing myself of my newfound decision to lock onto bilateral mastectomy with immediate reconstruction (if even a possibility for me), I was flooded with a heavy dose of guilt...guilt for considering removal of the both breasts, guilt for considering symmetry in the equation since I don't want to go flat...how vain of me...guilt at the though of the inconvenience it would cause my husband (though he wouldn't agree) and his work routines, guilt for the thought of creating financial stress for my decision (cost of life in my mind vs money cost), etc, etc. Am I special in my level of guilt I feel for any decision I make or is this a completely normal phenomenon? Pros to mastectomy for me include a bigger peace-of-mind that I did everything I could up front to get rid of the source or potential source, possibility of maintaining some sense of symmetry, get it done and move on. Cons could be a plethora of repeated surgery and possible complications/infection, downtime from work, longer recovery.

So, with the cons more than the pros for my decision of mastectomy, why does it still feel like the right choice? I just don't see either choice as having a pro list that would outweigh the cons in the end.

Talk to me! I know some of you have been here.

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My cancer was invasive lobular, HER2 positive, hormone negative. My oncologist told me that women are happy -with their decision once they make it. I'm not so sure. I opted for a single mastectomy and reconstruction. I re-thought this decision occasionally but once everything was done, I wondered If I really needed the reconstruction. I did not have the option of a lumpectomy though. I was 75 when I had to make my decision. That was 2 years ago. We all have decisions to make everyday. Think about where you are in your live. Once you make your decision, embrace it as the best one you could make.

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