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Topic: Sort of freaking out before surgery

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 29, 2019 12:24PM - edited Jun 29, 2019 12:40PM by skv0123

skv0123 wrote:

thank you to everyone who has been so supportive so far. I had decided on a double mastectomy with reconstruction due to ICL in right breast approx 2cm & the issues with mammogram picking it up etc. also, I didn't want to be anxious every six months, etc & wanted fairly symmetrical breast. I got my diagnosis 2 days after turning 47. I felt confident in my decision. Now, I'm freaking out 4 days before surgery. I know I am afraid of surgery & nowI'm reading that radiation may actually increase long terminal survival & am questioning my decision. Thanks for always listening. I feel really tired from all of this

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Jun 29, 2019 03:34PM OnTarget wrote:

Hi Skv0123,

Every part before surgery is just so full of anxiety, and it is really hard to make decisions that are so impactful on your life when there is not always a clear right or wrong answer.

Some of the things that have made me happier with my decision to do a BMX rather than lumpectomies are:

- I had lots of stuff going on in both dense breasts and I'd bet money that I'd have a recurrence down the road without the BMX

- Had they not caught the tiny ILC in my right breast, I'm positive that it would be large enough to notice in a few years and I would have been calling it a recurrence when I already had it!

- Many people on this board have had repeat lumpectomies some years apart- it is supposed to be rare, but it could happen to anyone

- I am happy to have symmetry and no more mammograms ever

- Radiation can be hard on your skin

- My surgeon seemed to feel that BMX was the most aggressive treatment for me (I like that idea!)

I didn't read the studies about radiation increasing long term survival. Was that for people with similar staging to you?

Good luck in your decision and have a great surgery!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 29, 2019 03:48PM Beesie wrote:

Well, of course you are freaking out... you are about to undergo major surgery. Totally normal.

Second guessing your decision? Yup, totally normal there too.

A breast cancer diagnosis messes with our heads. We want to make the right decisions. We want to make the best decisions. The problem is that there are no right decisions and there are no best decisions. The diagnosis comes with all sorts of scary risks, but every treatment decision also comes with all sorts of scary risks. So you have to weigh the pros and cons, evaluate the benefits and risks, and then make the decisions that you are most comfortable with. The decisions that are right and best for you. Not perfect, but better for you than the other options. Maybe more accurately, since all the choices are crappy and none of it is what any of us would choose to do, you make the decisions that you are the least uncomfortable with.

The other thing - very important - is that once you figure out what is right for you, don't look back. You did your homework, you thought it though, you made your decision. With all the uncertainties, it's easy to second guess. So don't give yourself the opportunity to do that. Look ahead, don't look back.

Good luck with your surgery!


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 29, 2019 06:33PM skv0123 wrote:

beesie - Thank you so much. This is exactly how I feel. I was diagnosed and my gut leaned towards BMX from the get go. I researched, I talked to a few survivors, but had to limit that some due to information overload, talked to my husband, talked with my doctors, etc. And, made my decision...but am a perfectionist and that isstarting to “act up.” “What is the right decision? (Because of course that would keep me safe...)

ANd, I am having major surgery & that is f’ing scary.

Thank you so much again.


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Jun 29, 2019 06:39PM skv0123 wrote:

OnTarget -

Your reasonings are very similar to mine. The study I ready was this:

https://bcaction.org/2015/12/11/sabcs-2015-comparing-lumpectomy-vs-mastectomy-survival-complications-and-cost/

I’m not sure if people had similar staging & diagnosis, great question.


There is no right answer & I think I keep looking for it.

Thank you so much for your thoughts & support.

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Jun 29, 2019 09:25PM - edited Jun 29, 2019 09:26PM by jessie123

Skv0123 ---I love that article. When I was diagnosed in December I lived on this forum trying to decide between the two options. It seemed like everyone was having BMX's. I couldn't understand why. It took me forever to make up my mind. I am so glad that I had the lumpectomy. It's such a simple surgery and if I have to have a mastectomy in the future I won't have regrets. I did what I could one step at a time.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Aug 13, 2019 09:46PM rossi11 wrote:

I’m about to undergo surgery in days and keep hedging. Never easy for anyonebut came as such a shock at 41... Everyone I talk to says, ‘why aren’t you getting a mastectomy?’ I really appreciate reading this article. Thank you.

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Aug 14, 2019 11:47AM claireinaz wrote:

Hi Rossi11,

It's really no one's business but your own. You have to trust yourself that you are doing the right thing. You can always get a BMX later, like I did. Right now it's your body, your choice, and you get to follow through with your decision. And you don't have to explain it to anyone if you don't feel like it!

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Aug 14, 2019 12:30PM - edited Aug 20, 2019 10:37AM by purple-flower

This Post was deleted by purple-flower.
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Aug 14, 2019 12:33PM - edited Aug 20, 2019 10:49AM by purple-flower

jessie123 - how are you feeling now? all done w/radiology? how did it go? So far I know: ILC, 1.6 cm (that they can see), grade 1. no info on nodes yet. in prelim ultrasound they looked ok, but who knows.... I am worried since this cancer is "sneaky". thoughts? advice?

purple flower...

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Aug 14, 2019 06:36PM Trying2staypositive wrote:

Every woman has a different choice between lumpectomy vs bmx and recon or no, and good reasons for it. For me I have too much going on in the cancer side for my comfort besides ILC -lots of atypical cells and stuff...some didnt show on imaging just biopsy so I cant be sure what is in the other breast. Thats MY situation not everyone’s. For me its a no brainer-bmx and expander reconstruction, the latter bc its a less involved reconstruction in many ways. Re breast cancer, I have a family history and am dense so imaging hard to read, also with atypical results including lcis...too many strikes against me I feel and dont want to be stressing as to what is in the other side that doesnt show on imaging. To me it made no sense to remove one side and not the other (and cosmetically I need to). That said I am terrified of a 5-6 hour surgery and my beyond awful primary care dr (who will I will never see again after this) is trying to scare me about my genetic high blood pressure preventing my surgery (got worse since all this stress) and by calling my cancer surgery “elective.” I wanted to say, judgmental much? Unbelievable.
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 18, 2019 04:45PM - edited Aug 20, 2019 10:50AM by purple-flower

hi claireinaz

Would you mind sharing what happened after first lumpectomy that then led to mastectomy? do you regret that you did lumpectomy originally? I don't want to underestimate the seriousness of risk in same breast and other one, etc.

Thanks

PF

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Aug 18, 2019 09:09PM jessie123 wrote:

Purpleflow -- I know - everyone talks about how sneaky ILC is and that's also what had me so worried. However, if it's so dangerous for ILC patients to have a lumpectomy why are the doctors offering it to us. It seems to me that the many articles we've read would mention that ILC patients should not have lumpectomies and I've never read that. I will be monitored much more closely than the general population for a recurrence so I feel confident that I'll be fine. My lumpectomy was a breeze -- 8:00 am surgery and home talking on the phone by 11:30 -- didn't even have to take an aspirin or any pain meds --- had one drain for a week. Rad's were boring and I hated going daily. However, no pain, no blisters or sores. I only put that moisturizer on once a day because it was so greasy.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Aug 19, 2019 03:02AM purple-flower wrote:

Jessie Thanks for the response. I really appreciate hearing your thoughts. I worry about my tumors if breast there still and then the other side too. do you worry? I am a worrier by nature too. that said I don't know if I am ready for full mastectomy yet. ugh. hope you are doing great!!

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Aug 23, 2019 11:03PM skv0123 wrote:

purple-flower - I hope you are doing well. I wanted to follow up as I ended up having a double mastectomy. recovery was somewhat rough, but mainly due to my reaction to the narcotic painkillers. After 2 days I just took Tylenol & Advil. I think no matter what you decide, there are worries & no guarantees, and you will wonder if you made the "right" choice for some time afterwards whether you get mastectomy or lumpectomy. Unfortunately, I have several friends who have had breast cancer, and we all questioned our choices in the weeks afterwards. I think it helps to focus on what feels best to you, and what your gut is telling you. Good luck, and I'm sorry you are having to make these choices.

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Aug 25, 2019 09:20PM purple-flower wrote:

Hi everyone here.

Ok I'm freaking out here. (for those who saw my previous freaking out posts, I did have a small lull time of feeling ok, determined and calm for a few days, ready to face what is ahead - but now that is gone.) I am now waiting for an MRI scheduled for tomorrow night to see/confirm the size, location, etc. that is assumed so far, including other breast which I guess they n read a day or 2 after? In the meantime I have had localized chest pain on sternum/rib area (it's been there a while) and cough, and I'm freaking out that it has already metastasized to sternum/rib bones which apparently ILC does. And, then apparently if it is in the bones, then it's stage IV right away. I am not sure I can handle a "oh it's small and slow growing" to stage IV overnight... I am also freaking out since surgeon (who has been great to date) is out of town for the next 2 weeks so double mastectomy won't be until later in September - like 6 weeks after I initially heard the news, and 4 weeks from now. I can't even sit still, focus or barely breathe - knowing it's in me growing, spreading, etc with NO treatment of any sort happening. Just sitting here forced to just hope that a small tumor cell doesn't break off, or travel in blood. It seems absurd to wait as noone really knows the pattern or timing, or .... I know I should not replay the "what-ifs" over and over in my head, and since we don't know yet, I should stay positive, and I am SO sorry to be so negative and crazy sounding, but I am totally overwhelmed with fear, grief, worry and overwhelming my husband at the moment. Haven't told our 2 kids yet as we are waiting at least for MRI info and surgery date so it's a bit more concrete for them.

Purple Flower

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Aug 25, 2019 11:05PM Trying2staypositive wrote:

I feel the same way at times Purpleflower w/the waiting. You will have good days and bad ones in this journey-this is what I have been told and it proves true. Mine was first seen in May, diagnosed in mid july. No surgery yet for 2 more weeks (assuming nothing goes awry with my health and changes it). Cancer Ive learned is ALOT of waiting-especially if they believe you are early stage as is thought for me also. Those they suspect or know are more advanced or aggressive get treatment first often vs surgery first.

My shoulder on the cancer side has really been painful for months but I think its more likely my rotator cuff than metastatic cancer. Try to take a deep breath. Im told most cancers dont move that fast even if invasive. Cancer at any stage can travel through the blood but that is what post surgery treatments are trying to address. (Including hormone blockers). My surgeon told me have surgery within 60 days of diagnosis if possible based on statistics. Mine will be a little sooner. Good luck on your MRI and try not to worry. My MRI looked ok but really ILC is hard to image so surgery is most conclusive at least for lymph nodes. I have not had a full body scan (just breast and chest/underarm mri) and was told I wont until after surgery, and maybe not even then if sentinel node biopsy is clear which I am really praying for.
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 26, 2019 12:39AM purple-flower wrote:

HI Trying2...

I really really appreciate you writing back and helping me feel somewhat sane. It sounds like we are in similar boats. I was diagnosed on Aug12 - ILC right side ER/PR+ HER-. They said grade 1 and she said small but they don't know anything really until it's all looked at after surgery I think.

I just can't believe this is all happening - any of it. all of it. I am still in shock

What day is your surgery scheduled? Mine is not yet scheduled. I am doing a BMX also, with implants, oh and the sentinal biopsy also. Hopefully I will know this week. I was/am sort of getting my head around the surgery part, and the hormones, and the implants... but the lymph, chemo, spread, rates, etc. is just so overwhelming to me. I don't know about you, but I am feeling like I can't talk with anyone these days (apart from a few very close friends). Can't do the chit chat, first day of school, ra ra, etc. I feel like some weird outcast on another planet, looking back at my life. Just want to sit at home. I hope one day I will feel "normal" again. I am so worried and scared. and sad.

I really hope all goes smoothly, quickly and easily for you.

Good night for now.

PF




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Aug 26, 2019 10:20AM OnTarget wrote:

Purpleflower- I found that I was back to normal quickly. I'm a little over 3 months out and I feel really good. My TE's cause a little stiffness in my pecs, but nothing stretching can't handle. I'm doing chemo now, but other than a few days of not feeling great, that has been fine after my first treatment.

I will be excited when I have my exchange surgery and everything is behind me, but really, I feel super. I am totally back to my normal life after an oddly relaxing summer spent recuperating from surgery.

For me, the waiting and worrying about getting metastatic cancer were the worst. Once the tumors were gone, I felt 1,000 times better.

I hope everyone's surgeries go well!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 26, 2019 12:27PM purple-flower wrote:

Thanks OnTarget. It's really good to hear your positivity and that so much is behind you and that you are feeling good! Something to look forward to. I need to get through this MRI test & results as first next step, as my chest pain and cough are worrying me very much. I hope it's just me giving myself this pain (emotions, or asthma, or ... something else) and nothing much more serious. Then onto the next step of worry. Waiting ad worrying are definitely not my strong suit.

Keep healing!!

PF


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Aug 26, 2019 01:33PM Trying2staypositive wrote:

Purpleflower, Im getting the exact same surgery bmx w te recon plus sentinel biopsy on 9/10 (assuming the reconstruction gets approved-ran into some insurance drama and put it back on dr to fix). In my pre op testing (chest x ray) they found gallstones of all things. Figures! That explained the zantac! Lol ugh

OnTarget I too hope that I will feel 1,000 times better once the source of my cancer is out. I feel like a sitting duck right now-especially w ILC not being super responsive to chemo alot of times in case any cells escaped...(my grade is 2 but miotic score is 1 so not a fast grower). Its exhausting. Im just tired. Not that I really want chemo btw (who does) but can be especially hard as I have a heart condition and mild asthma (allergytype

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 26, 2019 03:30PM OnTarget wrote:

Trying- I hear you! I went through all that same stuff. I ended up doing chemo b/c of my age, tumor size, mitotic rate, pleomorphic features, high Ki67, ITCs, etc. I'm happy with the decision, but it was really difficult. But still it was much less stressful than sitting around waiting for surgery imagining that just this minute would be the critical one where the tumor cells left my breast and traveled somewhere else. There was a recent study out of Europe (France maybe??) that did show adjuvant chemo to be better in preventing metastatic cancer than hormone therapy alone in patients with ILC. The team surmised that it was possible that the chemo is not as useful against larger tumors which is what the neoadjuvant studies were testing, but that chemo is potentially more useful with micrometasteses. No idea if that is true or not, but it sounded hopeful to me.

I don't know if them finding your gall stones was better or worse than what happened to me. My breast MRI found lesions on my liver. I was like "Oh No, I have liver cancer too! Like breast cancer isn't enough!". The things were benign, but still! What stress that was, but at least it wasn't anything at all.

I'm very happy for you ladies who will be getting your surgery and getting the cancer out!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 26, 2019 06:51PM purple-flower wrote:

Hi Trying & OnTarget (and anyone else...)

I have been interested in asking to start the hormone therapy pre-surgery, as opposed to chemo. Seems to me if tumor grows with estrogen/progesterone why not start earlier to at least halt/slow it while waiting? But noone talks about that and I can't seem to get an answer as to why it isn't started immediately at diagnosis or soon thereafter. Have either of you heard of this, or other info? Seems a lot less harsh than chemo, but again I'm puzzled about the rationale, other than "the order is... " (I intend to ask surgeon at 2nd opinion appt tomorrow w/MRI results). I hate just sitting here like a lame duck, trying not to drink alcohol (ha) and not eat tofu, as something I can do that is probably meaningless. Seems stupid to my way of thinking to just wait around for a massive intervention due to surgeon's busy schedules.

Any info?

PF

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Aug 26, 2019 10:03PM - edited Aug 26, 2019 10:16PM by Trying2staypositive

OnTarget, your rationale makes total sense! I guess I will wait and see what is recommended and try to determine if the % benefit of chemo (should it be necessary) is worth the risks. Mostly bc as I said I have heart troubles already...and am allergic to so many meds....so will have to see. Not that I want to skip it offhand, but I feel it will be easier if I have more reasons to think I will benefit or if it seems to have aggressive features which is still in question. Some people feel they can do it if their back is against the wall later (as in it spreads bc then no choice). Btw my mom had the same chemo you did and couldn't take the cytoxan (dr took her off after one treatment due to lung damage). She finished 3/4 of taxotere because an anaphylactic reaction happened. Since we are related I wonder if this is how I would be??So maybe her chemo experience influences me as kinda scary....That said she was stage 4 and is still here, 12 years later and hers went to her liver. She had invasive ductal though.

Purple you could start hormone blockers but I think they would not want you on tamoxifen before surgery bc it increases blot clot risks. You are premenopausal right? The others you have to be put into menopause to take.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 26, 2019 10:35PM OnTarget wrote:

PF I had to wait until after surgery to start Ovarian Suppression, not sure why.

Trying2- I don't have any allergies or health reasons not to do chemo and that figured into my decision. The total potential chemo benefit factored against my MO feeling I was very low risk for permanent adverse side effects. After your surgery and your oncotype score, you will have much more info to use. They actually said no chemo at first, but it came back on the table after the new TAILORx results showed my chance of recurrence is 12%, not 4. And my MO ran the Clinical version of the Onco for me at that time which actually said 13%, and it doesn't even factor in everything.


Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 26, 2019 10:37PM OnTarget wrote:

Trying2- I love that your mom has done so well for so long at stage 4! That is awesome!!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 26, 2019 10:52PM Trying2staypositive wrote:

OnTarget, were they able to say what % adding the chemo reduced your risk to? (Was 12-13% based on hormone therapy alone?) Forgive me if you already answered this somewhere and i missed it. Its getting late and am kinda tired!

Also what did TailorX show? Something specific to ILC?

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 27, 2019 10:38AM claireinaz wrote:

Hi Purple flower,

Sorry I haven't been on BC.org in a bit...but to answer your question about lumpectomy: lumpectomies are often used as biopsies. IOW I didn't have a needle or core biopsy first--my surgeon took one look at the ultrasound and told me (he was trying to be tactful) that even if they did stick a needle into the lump to find out what it was, it would probably worry me anyway--he was right--and why not just take it out? I didn't know it but he knew it was pretty certain it was cancer and wanted it out for my sake. His recommendation led to the lumpectomy followed by immediate dx. I found out it was cancerous before I was actually fully awake from the procedure.

Since it was ILC, and I found out that ILC has 1) a tendency to be multi-focal, 2) hard to detect generally on scans, 3) I had 5 yearly mammos that didn't reveal the cancer, and 4) I have very dense breasts, after chemo and rads it was a no-brainer for me to get rid of as much of that tissue as possible that was trying to kill me.

I had to wait a year for my BMX/immediate reconstruction, since I had to give my skin a chance to heal. But it worked out, I'm happy with my new boobs (although sad about loss of sensation--always will be).

When we are in survival mode, every little ache, pain, cough seems like a threat. We are hyperaware of our bodies when we feel threatened. I remember (I had some swelling after the lumpectomy) and I texted a photo of the swelling to my surgeon and asked him if it was lymphedema, because I had seen a documentary of a woman who had a bunch of nodes removed and she had terrible swelling. I was terrified I had that on top of c! It was just fluid from the surgery, he put in a drain that I wore for 3 weeks (and did yoga, hikes, everything with it in!) and it was fine afterward. No lymphedema.

I opted for chemo because i had + nodes; my MO strongly recommended it b/c of that. I knew I was healthy, more than strong, and could handle it. That's why I also wanted rads. I guess I didn't want to look back if there was a recurrence and tell myself, geez, I wish I had done all the tx I could get even if the % was low that it would help. I'm kind of a fatalist, and just wanted all tx I could get the first time around so if anything came back, I could at least say I did everything I could to keep it away. I have regrets in my life and I didn't want regret about this.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Aug 27, 2019 10:41AM - edited Aug 27, 2019 10:46AM by claireinaz

PS re hormone therapy before surgery-some women don't do well at all with anti-hormonals. So I expect they would want you to be as healthy as possible for surgery with no competing problems because of negative side effects from a new medication. Do you know how strongly ER/PR+ the pathology reported about your dx? Not everyone is, and so AIs/tamoxifen are less effective.

It's the isoflavones in processed soy that is suspect. Here's a Mayo Clinic link somewhat debunking the myth that eating soy causes or increases the risk of b.c.

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/soy-breast-cancer-risk/faq-20120377

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Aug 27, 2019 01:16PM purple-flower wrote:

Hi Claireaz

Thanks so much for the messages! I'm on pins & needles today waiting for MRI results from last night (if tumor same, more in same breast, other breast, and then chest pain...). I have a consult w/a 2nd opinion surgeon today at 2:30 scheduled if, in fact, MRI results are in then. I am hoping no surprises and all plans (double mx w/sentinal biopsy and implants is the plan - sigh.) move forward... trying to breathe.

My tumor showed 100% ER/PR+ for both. (and HER-) Crazy. That's why I am so attuned to it, but your explanation of the side effects getting in the way is the first rational explanation anyone has given me for why I didn't start immediately to stop feeding the monster.

I'm assuming this all was from fertility/hormone therapy ages ago to have my two gorgeous healthy children - so I'm trying to remind myself (even it that's not true) that I wouldn't change this for the world. I had years of "clear" mammograms, with the caveat that I have dense breast tissue, so who knows how long it's been lurking.

And thanks for sharing your thinking about treatment plan. I'm in huge fear of chemo. Radiation doesn't scare me as much. Seems more doable. Hair loss, nausea and that really sickly weak looking/feeling to go through chemo w/kids and friends/family around. That's just not my style. So I've been hoping it isn't in the plan (clear nodes, etc.) but I do appreciate what you're saying. I"m 52 and peri/post menopausal so that's a factor also.

Regardless, I'm hoping to come out the back end of all this treatment, worry and stress as a better person. You sound great. Glad you are doing well!

PF



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Aug 27, 2019 04:23PM HopeWins wrote:

purple-flower. Thinking about you today. And I hope you don't blame yourself. I went on birth control for about 5y for heavy periods before my ex and my tumor was ER100% positive. I'm also a social drinker... maybe a little more. I love a glass or two of wine at the end of the day! Did I do it to myself? Maybe... Would it have happened at some point anyway? Maybe... and if it happened later in life maybe I'm lucky to have it now. I'm relatively young at 47 and super healthy so I can handle beating this thing now.

I hear you on having to wait for surgery. Its brutal. I will tell you this though. I had a chance to go through the cycle of emotions while I waited. I also had a chance to organize things and that made me feel good. My BP was high starting with the news I'd need a stereotactic biopsy in late April. I was an emotional mess. But then last week before surgery, I got to a place of peace. I don't know why. My 3-4 months of high BP was all of a sudden 115/71 on the morning of surgery... inexplicable. I cried a little when the OR nurse took me down one hallway and my husband had to go down the other. But I made it and you will too.

And no matter the pathology, you will do what u need to do for you and your family. You will just have to take it one step at a time. Some days you'll be a puddle of emotion and some days you'll be fearce, but you'll get through it.

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