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.

nancyjop | @nancyjop | Feb 21, 2023
In reply to @laf70 "Hi..I am getting results of my biopsy tomorrow. Diagnostic mammogram classified mass as highly suspicious. I..." + (show)
@laf70

Hi..I am getting results of my biopsy tomorrow.
Diagnostic mammogram classified mass as highly suspicious. I am 72 and with no family history, this has devastated me.
I have had a knot 🪢 n my stomach since the biopsy last Thursday.
I writing this because I know all of you have been where I am tonight.
I am so scared.
Thanks for listening.

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Dear laf70, I had a lobular carcinoma removed at age 72 in 2019. It was discovered entirely by accident as my surgeon was originally doing a surgical biopsy because I have dense breasts. It's normal to be scared. It's not like we non-doctors encounter this situation daily in our lives. Here's what I have learned: live much more in the present moment, with a small amount of attention to the future, and none at all (if I can help it) to the past. I needed to increase my patience and persistence, which I had in moderate supply. I treat my health routines, from exercise to diet to appointments to dealing with all that paperwork, as a part-time job, to which I give it the same kind of attention I gave my workplace job. Tell others--friends and family-- about your diagnosis and treatment plans. They will respond with unexpected and overflowing support that you will treasure. --Nancy

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2 replies
lhwoz | @lhwoz | Feb 21, 2023

Thank you! Great tips. I am in CA and we keep heat generally low/off. I am not looking forward to tge post radiation meds but 1 step at a time! I think I'll be starting radiation in about 3 weeks or so. Have some healing to do still

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Sue Ellen Murrey | @semurrey | Feb 21, 2023
In reply to @lhwoz "Thank you! Appreciate any tips at this point. I am also doing a fairly drastic sugar..." + (show)
@lhwoz

Thank you! Appreciate any tips at this point.

I am also doing a fairly drastic sugar detox to just remove processed/refined sugars bc when I've done in the past it helped sleep and reduced headaches drastically. Hoping that helps.

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Thinking of you! Hot flashes interrupt sleep which can make for a long day-not sure where you live but I'm in MA and air is so dry in our home with heat on and Letrozole not exactly helping with that:) I have a humidifier that I blast on high as close to me as possible which really has been helping. You're doing all the right things so hang in there. Keep us posted on your onco results - I was fortunately able to skip chemo and finished 19 full breast radiation treatments end of January. I recently started the Letrozole and am dreading side effects as I realize they are cumulative. Joint pain upon waking but movement helps and I might try glucosamine and collagen type II as many on this site have recommended. Vaginal dryness has really been a side effect for me and my onco prescribed those little vaginal low dose estrogen suppositories that I'm going to try - while I'm 57 and estrogen positive both my gyno and onco recommended. Hang in there!!!!

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lhwoz | @lhwoz | Feb 21, 2023
In reply to @colleenyoung "So good to see that things are going well, for the most part. I'm tagging fellow..." + (show)
@colleenyoung

So good to see that things are going well, for the most part. I'm tagging fellow members like @semurrey @npigford @dolphina3 @selwena @ilcpfightee @beautybldr @rarelybees2889 to see if they have some tips on getting better sleep with the dreaded hot flashes and night sweats.

It sounds like you're doing some things that can promote good sleep, like exercising and getting outside and enjoying life. But those darn hot flashes.

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Thank you! Appreciate any tips at this point.

I am also doing a fairly drastic sugar detox to just remove processed/refined sugars bc when I've done in the past it helped sleep and reduced headaches drastically. Hoping that helps.

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1 reply
dolphina3 | @dolphina3 | Feb 21, 2023
In reply to @colleenyoung "So good to see that things are going well, for the most part. I'm tagging fellow..." + (show)
@colleenyoung

So good to see that things are going well, for the most part. I'm tagging fellow members like @semurrey @npigford @dolphina3 @selwena @ilcpfightee @beautybldr @rarelybees2889 to see if they have some tips on getting better sleep with the dreaded hot flashes and night sweats.

It sounds like you're doing some things that can promote good sleep, like exercising and getting outside and enjoying life. But those darn hot flashes.

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Hi those darn hot flashes. I wore cotton nightgown that are more breathable than synthetic material and kept water by the bed side. Excersize seemed to help, too. Good luck with everything. Thinking of you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 20, 2023
In reply to @lhwoz "So sweet of you to check in. I am doing ok, seem to be recovering from..." + (show)
@lhwoz

So sweet of you to check in. I am doing ok, seem to be recovering from re-excision. Still sore and wearing compression bra, and icing with occasional ibuprofen. I will resume some longer walks and hikes this week and then asking my surgeon what I can do at gym (working out, even if light and little bits, drastically improves my mood and outlook) . This weekend we went to visit our daughter in college and for 2 days life felt a tad normal.

I am awaiting the results of the labs from re-excision to see if margins were clear and hoping so. If these are clear I then await Oncotype and also an Ambry genetics blood test that did to determine next steps. if no chemo the plan will be radiation for approx 4 weeks, seems to be the norm?

My sleeping has been terrible, hot flashes/night sweats...really since late December when I went off HRT. Will this aspect ever subside? Ive started occasionally taking advil pm but just trudge on thru really. After these surgeries, though, I suddenly have back pain while sleeping? It's so strange, but maybe bc I was a stomach sleeper and just not used to it?
Any advice welcome!!!

Jump to this post

So good to see that things are going well, for the most part. I'm tagging fellow members like @semurrey @npigford @dolphina3 @selwena @ilcpfightee @beautybldr @rarelybees2889 to see if they have some tips on getting better sleep with the dreaded hot flashes and night sweats.

It sounds like you're doing some things that can promote good sleep, like exercising and getting outside and enjoying life. But those darn hot flashes.

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2 replies
lhwoz | @lhwoz | Feb 12, 2023
In reply to @colleenyoung "@lhwoz, what did you decide as next steps? How are you doing?" + (show)
@colleenyoung

@lhwoz, what did you decide as next steps? How are you doing?

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So sweet of you to check in. I am doing ok, seem to be recovering from re-excision. Still sore and wearing compression bra, and icing with occasional ibuprofen. I will resume some longer walks and hikes this week and then asking my surgeon what I can do at gym (working out, even if light and little bits, drastically improves my mood and outlook) . This weekend we went to visit our daughter in college and for 2 days life felt a tad normal.

I am awaiting the results of the labs from re-excision to see if margins were clear and hoping so. If these are clear I then await Oncotype and also an Ambry genetics blood test that did to determine next steps. if no chemo the plan will be radiation for approx 4 weeks, seems to be the norm?

My sleeping has been terrible, hot flashes/night sweats...really since late December when I went off HRT. Will this aspect ever subside? Ive started occasionally taking advil pm but just trudge on thru really. After these surgeries, though, I suddenly have back pain while sleeping? It's so strange, but maybe bc I was a stomach sleeper and just not used to it?
Any advice welcome!!!

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1 reply
trishc | @trishc | Feb 12, 2023
In reply to @colleenyoung "Hi @trishc, how are you doing? Don't forget that everyone reacts differently to medications and that..." + (show)
@colleenyoung

Hi @trishc, how are you doing? Don't forget that everyone reacts differently to medications and that people who do not experience challenging side effects likely do not report on a forum like this one. So it can give a biased view. Forums like this one help women cope with managing side effects and discussing options.

Your oncologist will review the various options available for you, and the pros and cons of each. Ultimately, the decision is yours. You are in control. Did you have the consult with the oncologist to discuss hormone treatment?

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Thanks..I have the consult on Feb 23rd. They had to cancel the first appt in Ian… don’t know why.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12, 2023
In reply to @lhwoz "Hi there New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and..." + (show)
@lhwoz

Hi there
New here. I was diagnosed in dec with ILC 2.1 cm. Had lumpectomy and sentinal node removal last week and found out 1 node had "rare isolated tomor cells". My margins weren't clear so I have to go in for re-excision. I am feeling very anxious about lumpectomy decision bc possibly mastectomy could be done. But Ive been advised that outcomes were same for both options and conserving breats more ideal for me? I am small chested and feel like if it doesnt help outcome why go thru all surgeries/spacers and implants? The plan is radiation starting about 4 weeks after final re excision and unsure about chemo, then the hormone blocking meds for post menopausal. You seem to be in similar situation and to everyone reading does this seem on par with your plans if similar? Were you recommended same plan? Any input so welcome. This all is just brutal. Oh and FYI I had been on HRT for 5 years bc menopause was so rough (i am 55) and MD said I was a good candidate bc no history of breast cancer.

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@lhwoz, what did you decide as next steps? How are you doing?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12, 2023
In reply to @katiel207 "Hi, I’m new here, I really don’t know what is going on with me, I had..." + (show)
@katiel207

Hi, I’m new here, I really don’t know what is going on with me, I had 3 months ago severe pain in my left breast, so much so I had to hold it up after taken my bra off put heating pad on it, could not put any pressure on it . I have pain in my left shoulder and skin is very weird feeling when I touch it, almost like it’s numb but not the same numbing feeling if like my hand fell asleep. I have a spot on my arm pit that just seems odd to me, had it looked at a few years ago they said it’s fine. I also have a lump in my neck on left side, the pain in my breast is no longer as painful but to touch it hurts , most days it’s just a dull pain, I do have a hard spot on it, and twice now I have had a cyst on the outside under the breast that I have had drained. I have just recently been and had a mammogram and all is fine. I don’t think it is I just feel off. I would really appreciate any help. Thank you.

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@katiel207, any update? How are you doing?

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