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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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Aug 27, 2019 07:56PM purple-flower wrote:

Hi Hopewins & Everyone

Oh my gosh, thank you for the posts, info, sharing stories, helping me stand up from my hunched over sadness, etc. It is really great to be able to put it all out here to people who understand, unfiltered (sorry). It really means a lot to me and has helped in so many ways already.

I heard MRI results and Rt side is as they thought - 1.2 cm although with some "gray area behind possible pre-cancerous"... and then small area left side 8mm is newly seen. They want to biopsy it to see what it is, but doesn't change BMX plan really. If left is cancerous it will include sentinal biopsy that side too and I guess higher chance of spread. But 2nd opinion surgeon was nice and supportive of my BMX decision, even though she said lympectomy is still an option. Ok so it's not super worse! Man, I'm exhausted from that worry... (more to come right?)

We also talked about my other questions re: hormone therapy before surgery and fertility treatment. She said both were good questions and worthy of clinical trials. She said in Europe they are looking at pre-surgery hormonal therapy but mostly just to see if tumor is "receptive" to it as they can tell w/in 2 weeks - so helps w/chemo decision. I told her I want in on that trial and she smiled and said she is sure that many patients would be and that I'm ahead of my time (hmmm).

For the fertility treatment question, she said she thinks that is also really worth looking at - as cancer can take 10 years to grow and she thinks now there is enough of a pool or women who have done treatment to see. She said it was not at all out of the question in terms of rise of rates and use of fertility, and older pregnancies. In my case I was 40 when I had my twins.

So... I can breathe just a little bit more today. Not totally worse than we thought and 2nd opinion was grounding. Heard rumor that surgery may be 9/11 but not set yet. Thanks for listening. I think I will have (just a little) wine tonight.

Love to you all

PF

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Aug 27, 2019 08:39PM DutchieGirl wrote:

purple-flower, I wanted to tell you my mom's story (very different than mine!). She had ILC, hormone positive. The tumour was 7 cm, and she had 13 positive lymph nodes. She opted for a bilateral mastectomy, went through chemo, and then radiation, and then more radiation. She was on tamoxifen for a short time but couldn't tolerate it so she stopped. She is really glad that she opted for the BMX. Oh...forgot to mention....this all happened in 1998/1999! Her 21-year cancerversary is coming up in September. She's been such a great support for me through all of MY treatment!

Dx 11/7/2018, IDC, Left, 1cm, Stage IIIB, Grade 3, ER-/PR-, HER2+ Surgery 1/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/3/2019 AC + T (Taxol) Radiation Therapy 7/28/2019 Targeted Therapy Herceptin (trastuzumab)
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Aug 27, 2019 09:37PM - edited Aug 28, 2019 07:07AM by skv0123

purple-flower

So glad you feel more grounded & got some more answers. I do think a study can out recently that fertility treatment increases breast cancer risk especially if done when 40 & over. I too did infertility treatments but at 32. Risk for under 40 was I believe 10% and over 40 was a bit more of an increase.But, that still doesn't mean we did anything wrong. We did the best we we could with he Informationwe had, And I don't think it is any one thing, but lots of things that we don't even know that come together. I have friends who have zero risk factors & did “everything right" ( according to textbooks) to not get breast cancer& yet they still were diagnosed. Sending hugs

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Aug 27, 2019 10:32PM mysunshine48 wrote:

Hi....popping in here. I have not been on BCC for a year or so. I decided to see what was on here now. Same thing, but, I saw this thread and wanted to give my 2 cents, purple flower, I had to wait 4 months for a double mastectomy. I decided on that because I did not want radiation. I took chemo over radiation. I would do the same thing again. I also had reconstruction with implants.Chemo is not fun by any means, and, yes, you lose your hair, but it grows back. This was 4 years ago. It is a bad dream now. I take Arimidex with no side effects. I am better than ever. Actually, I was back to walking 4 miles a day about 3 months after I finished chemo. I am 70 years old. You can do this. Try to not worry. That will do no good and stress is not good for you. Try to exercise and be as strong as you can on the day of surgery. The better shape you are in, the easier to get through it all. Feel free to ask any questions on here or PM me....I became a Reach to Recovery Coach and now help many women. The American Cancer Society send me women who need support.

To you all....you can do this! Whatever you are going through, trust that God will see you through it. There is normal....well, new normal, life ahead.

Lynn

Dx 1/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Chemotherapy 5/13/2015 TAC Chemotherapy 5/14/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 5/14/2015 Surgery 10/24/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole)
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Aug 28, 2019 12:04AM claireinaz wrote:

I suppose I had a choice to refuse chemo but the positive nodes were a game changer. I trusted my MO; she recommended chemo and was right to do it. I was terrified and cried through the first part of my first infusion but I did it. I was in great health other than that cancer thing (wink) which probably helped me recover so quickly from tx.

I do want to say that none of us “gave” ourselves this disease. There was a pretty active thread on that topic a few months ago but reality is that some code got turned on in a cell of ours that shouldn’t have. I know I’m simplifying complex science here but no way are we to blame for our disease.

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 28, 2019 11:10AM OnTarget wrote:

Interestingly enough I did IVF, at least to freeze embryos when I was 40, so count me in for 1 month of IVF treatment, although my cancer showed up 2 years after that.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 28, 2019 11:23AM OnTarget wrote:

Trying- The newest TAILORx really made a different in risk and chemo benefit for 40-49 year old pre-menopausal women with intermediate oncotype scores. Traditionally they lumped all of the ages together and did not take into account size of the tumor (risk). The latest results stratified the ages and added risk to it. According to their generic chart of people with my similar characteristics, my recurrence chance moved from 4% from being in the larger group to about 12% being in the more stratified group. The absolute chemo benefit for the larger group is <1%, while in my specific group it is ~6.5%. Big difference to me!

I added to that by having my MO run the clinical model which showed my more exact recurrence % at 13%.

The challenge is that TAILORx did not find the same results with women under 30 or women over 50. They are supposing that the chemo benefit was in fact caused not by the cytoxicity of the chemo, but caused by the ovarian suppression which is caused by chemo. For some women in their 40's, the chemo caused permanent menopause, while women over 50 are often already in menopause- this is the effect they mean. And women under 30 don't tend to get permanent menopause, so that is why they think they didn't see the same benefit from chemo. I was not satisfied with just going on their "supposition", even though it is quite reasonable. An educated guess is not something I wanted to base my potential lifespan on. It is a proven fact that chemo helps people in my group, therefore I was happy to do chemo to try to get my recurrence reduced 6% or so. I also am doing OS + AI, so hopefully this further improves my chances of averting a recurrence. While I have ILC, my cancer has pleomorphic features and is more aggressive, so hopefully more responsive to chemo.

I had isolated tumor cells found in my lymph nodes, and while they consider this node negative, it is a proven fact that I do have cancer cells that have left the building! I want the best chance to eliminate them and doing both chemo and endocrine therapy seems the most aggressive to me. Hopefully I won't get bad side effects!!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 28, 2019 04:08PM claireinaz wrote:

Very interest, OnTarget! Thank you! I was still ovulating regularly when I was dx at 53. It put me in permanent menopause, so I believe I'd fall in the appx. 40-49 category.

I also have only one adrenal gland--right was removed at 49, with a very large benign, extremely rare tumor. Seems like my right side (which was also the cancer side) seems to manifest stuff. Since adrenals also excrete hormones, my unscientific hope is that I've further reduced my estrogen production by having only one adrenal-along with the Aromasin I take, fingers crossed.

Thanks for the info!

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 28, 2019 05:22PM purple-flower wrote:

Hi all

Surgery date set for 9/11. Going in day before for dye re: lymph nodes. Have to have an MRI assisted biopsy on other side since they saw something small and want to know if they should do lymph nodes on left side too. Hope not.

Time to tell the family this weekend - kids mom/dad, sister. sigh. A heavy weekend ahead. Good thing is that I'm at a better place w/everything (for now) so I think I can relay the info calmly and clearly hopefully which will help. 2 work contacts notified and 1 more big client to go. Needing to write myself out of intense working for a few weeks.

I'm sure I will get more and more nervous as date comes near and I say goodbye to the ladies. sigh. They are pretty small and post twins saggy anyway so... here comes the perky me. Thanks for listening. Sending warmth and love

PF

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Aug 29, 2019 09:21AM OnTarget wrote:

Purple Flower- What a great attitude to have! I feel like that is the key to this going well for myself! Good luck with the MRI assisted biopsy!

My tracer dye injection the day before didn't hurt at all, so that was a non-event for me.

Good luck with the surgery and the new boobs! I like mine so far and they're just tissue expanders. I can't wait to get the real implants in there!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 29, 2019 11:36AM purple-flower wrote:

Hi Ontarget!

How was the surgery and recovery for you?? Any tips? I'm just scheduled w/all the various pre-op items and trying to keep breathing and be practical.

Looks like my husband will be here first 4-5 days and then we'll see - maybe my mom will come for a few days.

I have a few button down shirts and I can borrow his :-) any specific recommendations to get?

I am really looking forward to 2020 when all this is behind me/us!

Keep on, keepin' on!

PF


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Aug 31, 2019 09:07PM Trying2staypositive wrote:

OnTarget, wow thanks for the great explanation on TailorX!!! So very helpful. I dont think you will have bad side effects. My moms adverse chemo reactions happened right away so thats why hers was changed. That doesnt seem that common.

Good luck on surgery prep PurpleFlower, my surgery is 9/10. (Bmx w expanders plus sentinel lymph node biopst both sides even though cancer only appears to be on one). I too go in the day before for the lymph node dye injections. All other pre ops are done. Im starting to feel fear and get emotional about all of it.

OnTarget, who ran your oncotype? Your MO or BS? I dont have an MO yet. I see my BS 2 weeks after surgery for official pathology results but he said he will call me with them within days of surgery. Pretty sure he said he doesnt order oncotype etc yet Ive met some ladies whose surgeons have..

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 31, 2019 09:12PM - edited Aug 31, 2019 09:13PM by Trying2staypositive

OnTarget, also just commenting, if they believe the benefit of chemo in 40 yr old women is largely due to OS, you are doing alot since you did both chemo ans OS plus AI so you should feel great about that! I understand another benefit of the chemo was due to the more aggressive profile of your cancer.

Btw did anyones surgeon tell them they would turn blue from the dye for a few hours after surgery? Lol

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 31, 2019 11:35PM OnTarget wrote:

Purple Flower- I thought the surgery went well. It took a little longer than expected, but no real issues. My recovery seemed pretty fast to me. I was tired and sleepy for a few weeks, and had pain that wasn't too bad- used Tylenol and Ibuprofen mainly. The pain is more of a quick shooting pain when I tried to use my abs for anything, but that resolved. If you don't have full range of motion after 3 weeks, I'd suggest that you request physical therapy. PT was the best thing I did!

For recommendations- wedge pillow, and little $4 Walmart travel pillows (4 of them at least). For shirts, I didn't like wearing button downs or mastectomy shirts, so I ended up wearing stretchy Tshirts. I was able to put them on with little issue. I didn't like where the mastectomy shirts had the drains sit. They sit right on your stomach and stick out weirdly. I preferred the waist pouches. I just let them sit outside my clothes, and didn't worry about it. I also liked having a neck holder with pouches for showering. I needed water constantly, so having a water bottle that isn't too heavy was nice. And one of the best things was that a coworker brought me Halls throat drops the day after surgery. My throat and back seemed sorest. The Halls were amazing. Ask the pharmacy for non-child proof lids on your prescriptions unless you have little kids in the house.

I had lymph nodes taken out of both sides since I had cancer on both, but I have a feeling that it will be a non issue eventually. Most of the numbness has faded I'm just now noticing and there is only a little residual pain.

My SO teleworked the whole time I was out (2 months!), so I had a lot of support from him. It was very nice to be waited on, but I was fine to walk around the house, and I walked 3 miles a day in 1 mile increments from the beginning. I think you'll be fine with taking care of yourself after the first week as long as you don't need to open your own pill bottles or take the lids off anything.

Trying- My MO ran my oncotype. I asked my BS for a referral, and we'd been thinking of maybe neoadjuvant chemo, so it was definitely appropriate to meet with her first. I'm not sure if that always happens, but it makes sense to me. My BS actually gave me the oncotype results first though since I saw her first. My BS called me with my pathology results as soon as they came in, which was about a week after surgery I think. It is really good if your BS knows you are comfortable talking about real issues on the phone rather than you having to wait for an appointment. My BS was very proactive and she'd call me as soon as any info was known and I really appreciated it.

No on turning blue. :) Haha

I hope that I made the right choice with chemo plus AI+OS. I think that I'll feel best knowing that I hit it 100% from the start and that there is literally nothing else I can possibly do to keep from having a recurrence. That will let me move past it and not think about it going forward. Had I not done that, I think I would have fretted over it.

I wish you both the best with your surgeries! I tend to not get worried for procedures, so I was more excited than worried. I was also really surprised that it didn't hurt worse since I was really expecting it to be bad.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 3, 2019 11:46PM purple-flower wrote:

0ntarget

Thanks so much for the great and informative post! I hope your healing continues to go so well! I feel like I am on a rollercoaster going up and up on with that slow clicking sound... knowing will hit the top and go speeding down into the unknown soon. I am praying it is all taken out w clear margins and no lymph involvement! I am ready to accept the BMX (I think) but sire feel super nervous about all the rest. good night for now.

PF

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Sep 10, 2019 08:38PM - edited Sep 10, 2019 08:40PM by IBJUSTFINE67

Purple flow you sound just like me during the waiting part. I could not even go on sites like this, although very loving and supportive, I always had the tendency to diagnose myself or compare myself to others. I too just became a recluse but that worked for me. That is what has always worked for me and I bet you are the same way. Your brain is your bully right now. I heard from my own nurse navigator that the biggest fear before surgery is exactly what you just said and what I said to her basically....I even thought that squishing my breasts while sleeping would spread the cancer cells. I also had a lot of pain in my breasts, rib cage and sternum during the wait before surgery which worried me too. And guess what? It was not in my bones. At one point, I stopped looking up things online and asked my husband to hide my phone for awhile AND...I asked for xanax a week before surgery. Btw, I had to wait 45 days for my surgery. XOXO

Colleen Shaw Dx 7/9/2019, IDC, Right, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- (IHC) Dx 7/19/2019, IDC, Left, <1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/12/2019 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 11, 2019 07:04AM purple-flower wrote:

Hi IBEJUSTFINE - Thank you so much for writing back. It really helps to know that I am not totally out in left field!! Xanax before surgery - brilliant. Well, today is the day. I am writing this at 4am, drinking this yucky stuff they want me to pre-surgery, and then we need to arrive hospital at 6:30am. I am feeling a bit better in a weird way today (ok, this second) - now it is just the mechanics day - get that sucker out!!!! (I am still holding for dear life inside to hear the big pathology report after, but that's next post surely....) Bought 2 big pretty cupcakes for dessert w/family last night to say goodbye to the ladies. I meant it to be funny but it was a bit tragically sad. oh well. onward.

TryingtoStay - I hope it all went super smoothly for you and you are now healing and relaxing with this part in the rear view mirror!!!!

Bye for now.

PF

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Sep 11, 2019 12:28PM OnTarget wrote:

Good luck today Purple-Flower, you should probably be in the part of the surgery where they are putting in the TE's. I hope that everything goes well for you today!!!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 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 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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