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Help with Abbreviations

Topic: How can I help...like really help my wife?

Forum: For Caregivers, Family, Friends and Supporters —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Mar 11, 2019 10:02AM - edited Mar 11, 2019 10:02AM by JAG19

JAG19 wrote:

Good Morning.

My wife of 30 years was just diagnosed with IDC with one (so far) lymph node positive. I can't give the official technical diagnosis for all this yet, but I do know it is IDC with Estrogen positive and HER2 one mass plus 5cm. She had a PET scan and this week we are seeing a second Oncologist at Hillman Cancer Center in Pittsburgh, Pa and she is having MRI's/Brain MRI and bone scans this Thursday. Port to be put in the following week. Anticipating treatment starting end of the month or very early April.

As you know, the waiting sucks...we don't know if the cancer has spread anywhere else yet. I can't imagine how she is really feeling. We do talk and pray and I try to be as encouraging as possible. My attempts feel woefully inadequate.


So, advice for a husband? what can I do but be there, which I am but surely there has to be more.


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Mar 11, 2019 10:07AM Micmel wrote:

oh how my heart aches and understands the helpless feeling. I saw my sweet DH go through it. Just love her unconditionally and hold her hand. Kiss her. Tell her how beautiful she is to you. Reassure her you’re her person. And you’re always going to be there. Reassurance of love is what she needs right now. It will give her strength to focus and fight knowing you’re fully in her corner with guns a blazing ready to join the fight and or catch her when she has her emotionally bad days. Be her shoulder. She will guide what she needs help with physically as it goes along. She’s lucky to have you. I’ll be thinking good thoughts and sending good vibes of strength and support for you both! I wish you nothing but the best results...
Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Mar 11, 2019 10:19AM Ingerp wrote:

I'd recommend you carve out a little time to talk/think about *anything* else. Go to a movie. Watch some Netflix. Any kind of distraction. The diagnosis can be all-consuming--I think it's important to take some breaks to get it out of your brain space.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Mar 11, 2019 11:33AM Runrcrb wrote:

agree - let your wife be your guide and specifically try things that aren’t cancer focused during this diagnosis period and the ensuing treatment. Be the buffer for the concerned family and friends who will bombard her with requests for updates once her diagnosis is known. I highly recommend Caringbridge.org as a tool to manage updates. I had one set up for my husband’s illness and simply piggybacked mine on it. I refused to provide updates other ways. The “keeping people informed” is more exhausting than any treatment I experienced.

Good luck


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Mar 11, 2019 11:50AM astyanax66 wrote:

I'm very sorry, Jag. I think the recommendations here are great, especially CaringBridge--it was totally exhausting (especially for me and DH, both extreme introverts) to keep people updated. EXHAUSTING. That central place is a big help.

I would add (tongue in cheek)...don't ask if you can help. Just help. Here is an example: Don't ask if you can do laundry or dishes. Just do them. Don't halfway do them--wash, dry, fold, *and* put away laundry (not just wash and dry). I had a dedicated basket on a waist-level shelf where my clean shirts, underwear, and head covers lived--easy to access, no excessive bending. And do not expect anything in return. That is a huge gift. I know it was frustrating when kind and well meaning people "helped," but it ended up being more work for me (they would wash dishes, but leave them scattered on all the countertops to dry, and my numb, clumsy fingers broke lots of bowls--just trying to eat some cereal, not working myself). I was grateful for their intentions, but cried a bit because in the end, it was not helpful. And while most people never expected more than thanks, some wanted to do things on their schedule, their way ("I can only help every third Monday from 3-4 PM"), with a trophy. It will help your wife if you can perhaps juggle these times for her, so that she doesn't have to be the one that says no. (Hope that makes sense! I had wonderful help, btw, 98% of the time, but the 2% was tiring).

Also, something we did for my DH: He had one "getaway" weekend a month, where someone would stay with me. He went hiking, camping, and to a fun conference, for example. Cancer was omnipresent, and that 48 hours away from it helped him to help me. I hope that this helps you as well.

Dee


Dx 1/2004, DCIS, Right, <1cm, Stage 0, ER-/PR- Surgery 3/31/2004 Lumpectomy: Right Dx 2/6/2018, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 2/6/2018, IDC, Left, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 2/27/2018 Lumpectomy; Lymph node removal: Sentinel Targeted Therapy 4/9/2018 Herceptin (trastuzumab) Chemotherapy 4/9/2018 Taxol (paclitaxel) Radiation Therapy 8/6/2018 Whole-breast: Breast Hormonal Therapy 9/30/2018 Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 11, 2019 01:24PM Beaverntx wrote:

JAG19, the very first thing my husband said to me after we found out the diagnosis was "we're in this together" and we have been even through the times of my brain fog and very short fuse. Knowing he has my back has been priceless. He has also let me take the lead in what I needed, which is how I needed it to be but isn't true for everyone.

Diagnosed at age 77-- dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 11, 2019 03:06PM FaceForward wrote:

All the little things became the big thing that helped the most. At the onset, my quiet, man-of-few-words told me he'd be by my side throughout and he'd be as supportive as possible and "If I do it wrong, just let me know so I can get it right." After that, it was all the little things. Bringing me a cup of coffee every morning. HIM, wanting to try out a new recipe on ME. Watching Netflix together while he rubbed my fuzzy-socked feet. When I was up for it, taking a walk together - even if sometimes it was just around the yard. Fresh air, exercise and we always saw something interesting; deer, rabbits, eagles, etc., on those walks. They had nothing to do with cancer and were so uplifting to me. When we planned dinner & a movie together in our own living room, I fell asleep on the couch halfway thru the dinner he made. I woke up to my fave comforter over me and a glass of water and a hand drawn smiley face on the coffee table next to me. He never really asked. He just did. He moved things within my reach after my surgery. He made sure the bathroom was warm for me every morning. He helped me with lotions during radiation. He ran interference with well meaning friends & family. During a record breaking blizzard, he told me he would move mountains, ford streams and fight savages to get me to my last 2 radiation appts so I wouldn't have to postpone my completion date. He was good to his word on that - to the point of chaining up his truck tires and chain-sawing trees out of our way. He also somehow knew when I needed to be left alone and when I needed to be drawn out of my own thoughts. I would overhear him on the phone telling people how well I was doing and what a positive attitude I had. He was the reason for my positive outlook. Sometimes we would just sit next to each other each reading a book. Cancer is hard on the spouses too and once I was feeling better, I sent him off for a college basketball game/hiking weekend with his nephew. Looking back now, I realize that we both kept our sense of humor in tack during the whole ordeal. We were silly together. We laughed together. A lot. I have to say that cancer made our relationship stronger than ever. I have no idea what I ever did to deserve him. I've known of couples whose marriages have been destroyed during cancer and my heart hurts for them. The fact that you're on here, JAG19, asking this question tells me that you and your wife are going to get through this together. My best wishes to you both.

Dx 10/19/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+ Dx 10/19/2018, Right, ER+/PR+ Surgery 11/28/2018 Lumpectomy: Right Radiation Therapy 1/16/2019 Whole-breast: Breast
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Mar 11, 2019 03:35PM santabarbarian wrote:

If you can cook, you will be a godsend... (or if you can order/ pick up!) For me, procuring food that was appetizing and healthy was the most arduous task! It's very weird to be "hangry" and yet everything you can think of sounds unappetizing and horrible!

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 11, 2019 03:46PM kber wrote:

i echo caring bridge.

Also, think about how people can help you both. She will worry about you, too. You have to take care of yourself if you are going to be there for her.

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/7/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Mar 11, 2019 04:07PM JAG19 wrote:

Thanks all. I can cook, I already help clean and do dishes and laundry...the housework is not a problem for me. I'd do it all if that's what it takes without thinking twice.


She was having some pain in her left side today...her right breast/lymph node is where the cancer is. She panicked a bit because she has had asthma. She felt like her asthma is cancer in disguise.


The facts are that the mamo that found the cancer was the first she's had in 8 years so naturally you immediately go to how long has it been there??? So the waiting has been troublesome. This week should be telling.


the good news is that she called her Dr. about the pain she was having and the doctor told her the PET scan revealed the left side is totally clear where her pain is...however she didn't say anything about the right. Maybe thats because we know there is cancer there already but there were no reassuring words over the phone about the PET showing nothing other cancer other than what was already discovered...so there's that.

So Tomorrow is the second (and more vital) opinion from the Oncologist. Thursday is breast MRI and bone scan and possible brain scan.

No one prepares you for this and its surreal that your are learning the lingo of cancer suddenly out of the blue.

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Mar 11, 2019 04:31PM JAG19 wrote:

does someone have a caring bridge I could view? i didn't see any examples on the caringbridge website.

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Mar 11, 2019 04:58PM santabarbarian wrote:

I don't know about caring bridge... but if that's an extra step, here's what I did -- I sent a mass email and I added anyone who seemed to want to be updated to that. I sent it to myself with "Blind CC" for all the people I was actually sending it to, because some people tend to use "reply all" which is annoying to the group. I would send the emails every 3 weeks or so when the next chemo came around, or when something relevant happened.

I got this idea from a friend of mine's husband, who updated me and her other pals as to his wife's condition when she was diagnosed. I was really worried about her, and I always loved getting an email. Since I am single, I just did my own.

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 11, 2019 11:30PM AliceBastable wrote:

Do some fun things between appointments before surgery. If you just focus on the cancer, it can mess with both your heads. Look around on these forums and you'll see a lot of women who continued to work, exercise, and do all their regular activities through chemo and other treatments, sometimes with downtime as needed, but then they'd get back to their normal life until the next round.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Mar 13, 2019 02:53PM JAG19 wrote:

So we met with our Doc in Pittsburgh and we found out her PET scan was very good. They could see no more cancer in her except what they new about. He was VERY optimistic.... treatable/curable breast cancer was his theme.

We aren't naive, we know there are other tests this week and we know this is a hard and very difficult road but what a hopeful man he was and was very knowledgeable and is setting us up with a very amazing surgeon. Our spirits were lifted and are ready to put our heads down the lean into this to beat it and come out the other side different and better for the experience.

Long road ahead. treatment starting soon.


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Mar 13, 2019 08:08PM rachelcarter35 wrote:

My guy hit a wall at a certain point and needed a break. Don't feel bad about this. Get help from friends and family when you need a break. The whole family gets cancer in a way.

My guy was amazing and this whole thing made us closer.

Thank you for asking BTW. You rock!

Dx 2/21/2018, DCIS/IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2018 Mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy 6/15/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy Targeted Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 14, 2019 08:25PM Moongoddess67d wrote:

Thank you for asking this question and for the helpful replies Although my situation is different (it is my daughter who has been recently diagnosed), I am looking to learn the best ways for me to provide support for her and her family I truly appreciate the time spent by you when replying to the posts

Dx 3/8/2019, DCIS/IDC: Cribriform, Left, 2cm, Grade 1

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