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Pathology is back and it’s aggressive

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  • kdholt
    kdholt Member Posts: 40
    edited September 2020
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    So I called the breast surgeons office today (she is an oncology breast surgeon) and talked with my nurse. I asked her how they determined that I should not have chemo until after the surgery. She said all my pathology and records, etc. were brought before a big panel/review board. They do this with every tumor. The board consists of 20ish people made up of at least 6-7 MO ( one who will probably end up being my MO I'm assuming), a number of Radiologists, Surgeons, plastic surgeons and nurses. As a panel they review each individual case. She told me that anything 2cm and over get chemo first but I did not meet the criteria based on tumor size and grade. I have a lot of confidence in my doctors. This is a big cancer hospital affiliated with MD Anderson. I believe they know what they are doing and I'm choosing to trust them. I am really at peace with this decision.

    Debbie

  • etnasgrl
    etnasgrl Member Posts: 185
    edited September 2020
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    I was diagnosed in 2015 with Stage 1 IDC in the right breast.....1 cm, ER+/PR+/Her2-, node negative, Grade 2. Had lumpectomy, followed by radiation and Tamoxifen.

    In February of this year, I was diagnosed with IDC in the left breast.....8mm, ER-/PR-/Her2+, node negative, Grade 3. (So a complete opposite of the first diagnosis.) I did 12 rounds of Taxol with Herceptin and am currently on Herceptin only until February 2021. Just had a bilateral mastectomy with immediate DIEP flap reconstruction on August 20th.
    I didn't cold cap.....way too rich for my blood, but my infusion welcomed it if I had wanted it done. I shaved my head prior to Taxol beginning, but didn't actually lose the stubble I had left until the 10th or 11th infusion. My eyebrows and lashes stayed the entire time and didn't fall out until 1 month AFTER Taxol ended. Literally all fell out overnight. I went to bed with brows and lashes, woke up the next day without them. Then, almost one month to the day, the grew back in within 2 days. Completely. Even my MO was amazed, said she had never seen that type of regrowth, lol! (And no, I was not taking any supplements or anything.) Just so strange!

    My side effects on Taxol were thankfully not too bad. Bearable and I was able to continue working full-time. They have so many drugs to help tolerate any side effects that may occur, so try not to stress too much about that. Because neuropathy is such a common side effect of Taxol, I iced my hands and feet during the infusions. I used gallon sized Ziploc bags full of ice on my feet. One bag under each foot and one bag on top. I froze 4 water bottles for my hands. Held one in each hand until the ice started to melt and then switched the bottles out. My infusion center supplied the ice, which was great. I just brought the bags and the frozen water bottles from home. It worked perfectly! Taxol ended for me in June and I never got neuropathy and still don't have it today, so the icing was totally worth it!

    All of this is totally doable! Scary, overwhelming, and all consuming......but doable! I came often to read threads and/or ask questions which helped tremendously!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2020
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    Kdholt, I am glad to know that a tumor board with all the sub-specialities met about your case, and that you have confidence in the plan.

  • kdholt
    kdholt Member Posts: 40
    edited September 2020
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    Etnasgrl and Shetlandpony thank you for the words of encouragement.

    Etnasgrl or anyone else who can speak to this tell me about the surgery. I'm at peace with all of my decisions but honestly I think I'm more afraid of a 6-8 hr surgery then I am the cancer. So Etnasgrl you had radiation correct? How is the rads reconstruction side healing? Any problems? How was the recovery overall from surgery? Any tips you can share that helped pre and post surgery? Thank you for the tip about icing hands and feet during infusions. I would definitely like to try that! My daughter is getting married in May of 21. It stinks to think I may not have any eyelashes or eyebrows. I can have fake eyelashes put on but any suggestions about eyebrows?

    I am leaning toward shaving my head and wearing a wig. Cold capping is just way too complicated. My infusion center does allow it my nurse said but only a handful of people have really tried it. And again I want pretty hair for my daughter's wedding in May not thin mousy hair that I can't do anything with so I think the wig may be a better option.

    Thanks!

    Debbi

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited September 2020
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    I had bmx, not sure how long it took. Stayed overnight as out patient, home next day. Did wake up with LE in that arm. No driving of course. There are threads here about what to do/not do after surgery. I didn’t do recon so can’t speak to that. Have everything you need on the counter, no overhead reaching. Zip up tops, button shirts. Carpenter apron to put drains in.

    I lost ALL my hair, not just on my head. Nose, lady parts. They don’t tell you about that. Your lashes and brows will come back, but not at once, and may fall out a few more times. Check at a good salon, they may have suggestions for brows.

    My MO gave me a script for a cranial prosthesis. A wig. Then my insurance paid for it. And told me where to go. I got it, hated it. Hot and itchy in our heat and humidity.

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2020
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    Debbi, eyebrows are surprisingly easy, or were for me, anyway. I didn't lose mine until after I was done with chemo (4 rounds AC, dose dense.) Eyelashes came out then, too. I wear glasses so that wasn't a big deal for me.

    But the eyebrows were for me. I bought Benefit eyebrow powder and drew them on. They looked REAL unless you were very close to me. My brows and lashes came back in, thick and beautiful, a few weeks later. And since then (a year) they've cycled in and out a bit, so sometimes my brows are thick and other times a bit patchy. No one cares these days! But I still have a lot of the Benefit powder to fill them in for times when anyone does see me. Good luck.

  • kdholt
    kdholt Member Posts: 40
    edited September 2020
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    Thank you Spookiesmom and mountainmia for the tips. Those are all great ideas. For the eyebrows it looks like it came in a kit or just the powder. Do you have a recommendation? Eyebrows and eyelashes will be a huge deal for me. Can you get eyebrows tattooed? I wonder what happens when brows grow back in

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2020
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    What I bought (Benefit eyebrow powder) was in a small tin with an applicator. The tin is all of about 2" x3", maybe not that big. The applicator has a firm cone-shaped sponge on one end and a spiral brush, similar to a mascara brush, at the other. Once you've drawn the brow on, the brush end gives it a little textural look. I bought a separate brush (different brand, I don't know what) that was longer and easier to handle, but you don't need to.

  • mountainmia
    mountainmia Member Posts: 857
    edited September 2020
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    Wigs: there are lots of threads on wigs and other head coverings. I didn't want a wig, didn't shop for one, didn't get one. I went bald at home and wore scarves when I was out. Then at a point I got fed up with the scarves. It was summer, they were hot, and they weren't attractive anyway. So I just went bald. No one cared.

    A story about when I finally gave up the scarves: my husband and I volunteer once a week with an English class for foreign-born adults. I had told them what was going on before I started chemo, and that I would lose my hair. They saw me every week as I went through it. Then one day I was presenting, and I was hot. My temperature control was not great, so I heated up sometimes, similar to hot flashes. Anyway, I stopped talking and looked at the class, then asked, "Does anyone care if I take my scarf off? I'm too warm." There are people from all over the world, including women who have their heads covered ALL the time in public. People shook their heads so I pulled it off and went back to the lesson. My husband says they applauded when I did, though I didn't notice.

    No one minds us being bald except us. And if they do, it's really their problem.

  • minustwo
    minustwo Member Posts: 13,129
    edited September 2020
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    kdholt - it takes some reading, but all of the answers are here on this site. Below are some links that you'll find useful.

    Here's a great surgery thread

    https://community.breastcancer.org/forum/91/topics/699896?page=1&post_creation=true

    And here's a great chemo thread

    https://community.breastcancer.org/forum/69/topics/706846?page=1

    That said, I would definitely join the current chemo & or surgery groups .And read the month before.It helped to make the journey with others in exactly the same place.

    Here's the August surgery group.There is a September group (see all topics)

    https://community.breastcancer.org/forum/91/topics/877023?page=2#idx_31

    And here's the August chemo group - and again there's a September group.

    https://community.breastcancer.org/forum/69/topics/877152

  • dogmomrunner
    dogmomrunner Member Posts: 492
    edited September 2020
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    kdholt- I had surgery first because my tumor was smaller than 2 cm. But I only had a lumpectomy. There is a lot of info about mastectomies and chemo on here so definitely check out those threads. If you have what I had for chemo treatment (Taxol and Herceptin for 12 weeks) then I can say for me it wasn't horrible. I didn't not cold cap and while the hair falling out wasn't fun it wasn't as bad as I thought it would be. I worked full time during my treatment and it was manageable.

  • kdholt
    kdholt Member Posts: 40
    edited September 2020
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    Thank you for pointing me in the right direction Minus 2 and DogMom thank you for the encouragement. That is good to know that you felt the chemo regime was manageable as that is the plan for me after surgery as long as my pathology stays the same

  • specialk
    specialk Member Posts: 9,227
    edited September 2020
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    kdholt - just wanted to add that I was diagnosed 10 years ago today, with a 2.6cm and node positive tumor, and had surgery first (standard of care at the time, even for a tumor larger than 2cm as Perjeta was not yet used for early stage) with six TCH adjuvently. I continued with Herceptin for the balance of the year. Like you, my biopsy pathology showed weak PR, but Mammaprint testing showed that I was ER+/PR-/Her2+. I cut my hair to just above the chin before I started chemo because I used the long ponytails to have a hairpiece made from them. I also got a wig that was fairly similar to my hair at that time. I had it trimmed by my salon to make that even more so. I kept my hair through two cycles of chemo and didn't buzz my head until day 25, so I went a third of the way through with a full head of hair. I did not lose my brows, then only thinned, and also did not lose all my lashes. I filled brows with a pencil, and wore heavier liner to mask the sparse lashes. I wore false lashes only once when meeting old friends of my husband's for the first time. Taxotere is considered more harsh than Taxol and I was never shiny bald at any point, so it is possible that you will hold onto some hair for longer than you think, and may not lose brows/lashes totally. As always, mileage may vary, but I wanted to offer my experience. PErsonally, I would use a brow stencil and not microblade your brows unless you can do that while you still have them. Most reputable estheticians who do microblading won't do it this close to, and ahead, of chemo as there is a substantial healing process and a touch-up at the six month point. I did microblade a couple of years ago because my brows are blonde-ish.

  • etnasgrl
    etnasgrl Member Posts: 185
    edited September 2020
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    Etnasgrl or anyone else who can speak to this tell me about the surgery. I'm at peace with all of my decisions but honestly I think I'm more afraid of a 6-8 hr surgery then I am the cancer. So Etnasgrl you had radiation correct? How is the rads reconstruction side healing? Any problems? How was the recovery overall from surgery? Any tips you can share that helped pre and post surgery? Thank you for the tip about icing hands and feet during infusions. I would definitely like to try that! My daughter is getting married in May of 21. It stinks to think I may not have any eyelashes or eyebrows. I can have fake eyelashes put on but any suggestions about eyebrows?

    Yes, I had radiation on the right breast. As for healing, it is doing just fine. I had zero issues with it!

    Recovery overall is long and slow, but very doable. Honestly, I was not truly prepared for how long and slow it would be, even though I was told by my surgeon. I figured I would be back to my old self in a week or two. Not so. I am in my 6th post-op week and am still not back to my old self. I am doing well and MUCH better than when I first came home, but am not at 100% yet. Close, but not quite there yet. I have since slowed down and became more gentle with myself and my expectations. That has helped greatly!

    Tips for pre-surgery......try not to worry too much. I was a nervous wreck to be under anesthesia for such a long time, it really scared me and caused quite a bit of stress. Honestly? it was all for nothing. I remember being wheeled down the hallway, towards the OR and the next thing I knew, I was opening my eyes in recovery. You will do just fine, no matter how long your surgery is! Please don't let it scare you.

    Tips for post-surgery......have several drain shirts to wear. I bought mine on Amazon and they were a life saver! Mine are snap closure with inside pockets for your drains. They worked perfectly! I also bought a drain apron. I tied it around my waist, put the drains in the apron, and used that when taking a shower. Again, worked perfectly. (Also found on Amazon!) And I bought some compression sports bras to wear once the bra put on after surgery could come off. Lastly, I bought an abdominal binder to help with swelling. Again, worked great! I will supply all the links for you.
    If you can, sleep in a recliner for the first few weeks. It makes things SO much easier as it is hard to get up and out of bed for a while.

    As for eyebrows.....I bought some temporary eyebrow tattoos from www.headcovers.com and they worked amazingly well! Looked like real eyebrows and lasted a few days. Very easy to put on and take off.

    Drain Shirts: https://www.amazon.com/gp/product/B076FG7F6D/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1
    Drain Apron: . https://www.amazon.com/gp/product/B07S3V617G/ref=ppx_yo_dt_b_asin_title_o06_s00?ie=UTF8&psc=1
    Compression Sports Bra: https://www.amazon.com/gp/product/B019NA4X82/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1
    Abdominal Binder: https://www.amazon.com/gp/product/B07CW2TFRQ/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

    Hope this helps! Smile

  • kdholt
    kdholt Member Posts: 40
    edited October 2020
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    Etnasgrl, thank you so much for all the information. This is so helpful

  • kdholt
    kdholt Member Posts: 40
    edited October 2020
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    Hi everyone! Surgery is scheduled for Monday, October 19. Just a few days away! Getting a little nervous. I will be so happy when it’s this time next week because I will be home with everything behind me!!!! Well, except chemo but one step at a time....

    Debbi

  • minustwo
    minustwo Member Posts: 13,129
    edited October 2020
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    kdholt - Keeping you in my thoughts. Good luck.