TRIPLE POSITIVE GROUP

kae_md99

Thanks Special K! my arm does not swell but apparently measurements by my PT indicate otherwise.i though feel the tightness/heaviness is creeping up.

SpecialK

ingerp - I am a bad advice giver on this subject - I tend to minimize and only share as much as I absolutely have to with family in order to do exactly as you mentioned. I did not tell my husband that I was even having a biopsy, I went by myself after work. I received the diagnosis by myself also, so the first my husband knew about the whole thing was when I told him I had breast cancer. I had such a long history of breast issues I didn't want to worry him unnecessarily and I didn't need him with me for the procedure, so I just hung it out there hoping it wouldn't be cancer, but I ended up on the wrong side of the bet. He said he understood why I didn't tell him in light of my history, but I know he would have been a great support too and I did deprive him of that initially, he has been awesome throughout this whole experience - steady as a rock. I have also given him plenty of opportunities to be supportive as I tend to be a Murphy's Law patient, lol! I did not tell my son, away at college, until I had a plan in place. He is not easily rattled since he is a paramedic/firefighter, and later when I asked him if he was scared his answer was that I seemed confident so he was too. I think you need to do what your conscience will allow, and if you think you can tell your family after the get-together without upset then I see nothing wrong with trying to preserve the happy feelings while you are together. You know them best and can likely gauge how they will respond. I suggest honesty if you wait and confess that you were avoiding telling them so everyone could focus on celebrating the graduation and being together, and you were unwilling to make it about cancer. I indicated that I was ok and had no regrets about the order in which I told people, and that alleviated any feelings on their part that I had borne any burden of keeping that information to myself.

I am glad you have come to a decision regarding treatment - don't look back, keep moving forward and embrace your decision, I know you gave it really good thoughtful research and deliberation.

Taco1946

INGERP - I sent you a PM. You will see that my opinion is different from Special K's. Do what feels right for you and your family.

alwaysbepositive

Ingerp,

Every person and family deal with this in their own way, but I told my husband the moment after I talked to my dr. We are best friends and share everything like we are truly one person. My kids are still little and we gradually gave them pieces of info. One thing I will say, I can't stand to be in the spotlight and have people worry about me. For instance, we will go to large family gatherings for bdays or baby showers and everyone wants to see how I'm doing and ask questions, which I understand. But I hate that it takes the focus off of the birthday girl or the mom to be, it's not fair to them, that was their day. Ya know. So if it were me, I would wait until the end of the trip, enjoy your time with family, but share it before everyone parts ways. I think they would appreciate being able to support you and increase your family bond.

Whatever you decide, I'm sure it will be he right decision for you and your family. I pray you are at peace with all your decisions during this marathon.

Ingerp

Fine words, SpecialK. I'm a lot like you--did not tell hubs about the biopsy, and decided not to tell him about the dx right away because I got it the morning he was leaving the country for his 60th birthday trip. He's only seen my BS maybe three times--once at the dx two years ago, and again right before the surgeries. He's never met my RO. I do not foresee bringing him along to tx, although think he would like to be there for the teaching session (or whatever it's called), just to get some familiarity with the facility and drugs.

I threw this question out to a private FB group I'm part of (college-related--we all had kids graduating from hs the same year), and have gotten good advice from them. The one who has held my hand the most (also a BC survivor) reminded me that I'd told my kids I met with an MO on Monday but did not have a tx plan locked down. (Honestly I'd forgotten!) I think I'll do a reply all to that e-mail, with a little more info, but emphasize the preventive nature of it. That'll get it out of my head a bit, and open the door for questions. And to the extent that young men do this, they'll have time to process it before we're all together.

Another BCO member PM'd me about being at peace with my decision, which I really am (actually told my MO last night I was about 93% there). What I am sure about is that I'll get through this, and when it's all behind me will feel good that I did what I could. It is significant to me that my MO has used the word "cured" twice now. That's the clear goal.

Tresjoli2

welcome always...

faith if you are on lupron that might be your culprit. I was on Lupronfor two years. It was horrible and made me feel 100 years old. I went off and steadily improved...

meg2016

Some people were talking about a desire for a wellness retreat, this one seems quite complimentary for other treatments and sounds terrific given what we've all been through. They have other retreats scheduled as well that look nice...

https://www.lakelouisewellness.com/mind-body-welln...

Edited by Mods to make link hot.

deni1661

specialk - I do have a glove for the LE but my swelling is mostly confined to my upper arm where I had the shoulder surgery. I got fitted today for a custom sleeve so I'm ready for flying. Thanks for all your helpful suggestions!


Ingerp - I'm so glad you are at peace with your decision. It is a tough one to make and I know you did lots of research. I'm also happy your MO has used the word "cure" during your conversations - that is what we all want to hear. In regard to sharing info with family and friends, I am a lot like specialk where I share minimally and only on a "need to know" basis. I didn't want people fussing over me and I didn't want to steal attention away from a special occasion. For example, we had family over to celebrate my SIL's birthday a few days after I was diagnosed. I told everyone I would not be talking about my BC that day because it was a day to celebrate. I followed the same process for many occasions during treatment and surgeries. For the most part, people respected my wishes. My son has been very supportive but doesn't want to hear about the specifics, he is more interested in knowing how I am doing emotionally. Me personally, I would enjoy the trip and family time first and then maybe talk with the kids on the last day or after returning home. I know you will handle whatever you choose to do with the utmost consideration for others :-)

SpecialK

deni - I would wear the glove so that you don’t push the swelling down into the hand from the arm. My swelling is much higher also, but I wear my gauntlets even though I hate them, lol! I hope you have an enjoyable trip and safe travels!

Ingerp

Thanks so much, deni. Very kind words. (BTW--I lived in Madison for three years and Milwaukee for another three--love Wisconsin!!)

Taco1946

My husband of 52 years and I met when we were students at Beloit College in WI.

coachvicky

Taco1946 ...I bet there is a wonderful 52 year love story.

Vicky

FaithHopeLove84

Special K - My Herceptin infusions are 30 mins. My hip pain is fairly consistent, but gets better the more I exercise. I could possibly have a little arthritis in my joints? Onc wants me to continue Lupron. I go on armidex today, so I am worried this might worsen the joint symptoms.

LaughingGull

Hi dear Positive Ladies,

Checking in and catching up. I made my lumpectomy vs mastectomy decision (it's going to be unilateral mastectomy with tissue expanders) and I am heading to surgery. Thursday next week, April 26th will be the day. I will have the mastectomy and also axillary lymph node dissection ALND.

Due to the ALND (plus chemotherapy, plus possible radiation to the axilla) I am worried about lymphedema and I will have a consultation next week with a lymphedema therapist to get the story straight -what to look for, what to avoid- and get baseline measurements.

I had a couple of meetings with the plastic surgeon and on Monday I will have the last one with the cancer surgeon. Anything you wish you had asked your surgeon that you didnt?

Honestly I am freaking out. Trying to calm myself down, breathing deeply, swimming often, thinking of you ladies and telling myself that I am not alone, and that if you could do it, so can I.

Just please reassure me that I can do this!

Love and peace to all.

LaughingGull

PS: I grew up eating very healthy (mediterranean diet) and as an adult I eat almost vegetables and whole grains with fish and lean protein and the occasional steak/burger. It didn't prevent me from getting cancer. I wouldn't agonize about it.

deni1661

Taco1946 - how awesome you and your hubby have been married 52 years! I'm sure you have great memories of your time in WI, we have a lot of fun in our state!

Ingerp - I knew we had a special connection 😉 It's a WI thing

deni1661

Laughinggul - congrats on your decision, I will say an extra prayer for you next Thursday that your pathology is all clear - clear nodes, margins and pCR! You CAN do this and we are right here with you throughout your journey. I relied on my faith and did a lot of affirmations leading up to the surgery.....I am cancer free, I will have clear nodes, I am healthy and strong, I have many years ahead of me, etc. I also meditated, especially before bed so my mind was clear of any negativity while I slept. I was motivated by all the women who went before me and like you, I told myself "if they can do it, so can I". I think the support from this group and the ladies in the surgery thread provided me with the most inspiration. Plus my surgeons and all the caregivers at the hospital were amazingly compassionate and attentive to my every need. The morning of my mastectomy I was calm and no tears or fears. So my advice to you is....you absolutely got this, you are stronger than you think, you have a skilled medical team that is going to take good care of you, and you have the love of family and friends who will be right beside you. Repeat this over and over - the fear or negative thoughts won't be able to sneak in!

Wishing you a calm and peaceful weekend, hugs 😊

coachvicky

Laughing,

Congratulations on your decision. Remember to always look forward.

Here are some things that I asked:

My DH took a picture on my chest and I gave it one to both the surgeon and plastic surgeon. I asked them to draw EXACTLY where my incisions would be.

Where EXACTLY will your incisions be for your lymphs?

I also asked that as each surgeon left the OR they gave me a personal message while I was still under. Something like, "Vicky this surgery went great. Vicky your recovery will be easy."

Do you have this, yes! Are you in shock and scared, most likely. You are stronger than you know. One day you will look back and be proud of all you have accomplished.

God's blessings. I will keep you in my prayers.

Vicky

deni1661

Specialk- I will take your advice and wear the glove! My PT told me to back off on the shoulder exercises to help reduce the swelling that is already there. I wore the new custom sleeve yesterday and wow is that thing tight. I'm getting used to it more today so I think I'm ready for the trip. Thanks for your help and well wishes 😊

VVV

Hey all, I need some help. My last chemo was on April 3rd. I had an MRI yesterday and my surgeon left a message saying I had a good response...then when she called back, she told me that it's decreased in size by about half. My original mammo read: 45 mm x 34 mm but my MRI was: 5.4 x 3.8 cm. Should I be happy hearing that it decreased by half? That sounds like a particularly bad response to me. She also told me the lymph node that was large decreased by about half. They've never said anything to me about thinking cancer was in my nodes and told me not to worry about that node? Everyone kept telling me that they thought we caught it early. Now they're telling me the response is good and I feel like everyone is painting a sunny picture but no one is telling me the truth. I know I should've asked her more questions but my brain broke when I was on the phone. I know I haven't seen the actual measurements and maybe I should chill and this isn't the final surgical information or anything but I dreamed of PCR and it seems like I haven't even got close and it's sort of breaking my heart.

Does anyone have any information at all about less than ideal responses? I've seen some people have AC after TC/HP but I've never seen any sort of guidelines or information at all about what happens in this situation? Is there any sort of protocol for this? I'm really just hoping that there's resources I can read about this situation that will give me some hope. Also, I'm already planning on trying to switch to a new oncologist before I continue treatment so there should be a fresh evaluation then. I'm thinking that I want to try to go after surgery so that pathology is back and they can use that when first looking at my case. Does that make sense?

SpecialK

faith - ask to slow your Herceptin infusions to at least 60 mins, preferably 90 mins, and see if the hip pain improves. I had 90 min infusions when I received Herceptin with chemo. When chemo was over and I was receiving Herceptin only my infusions were accelerated to 30 mins and I had unrelenting hip and upper leg pain. Asked to slow back to 90 mins, never had hip pain again. You may experience some increased joint pain with Arimidex, and you may not. I found an anti-inflammatory diet helped a lot, as did consistent exercise, I also have some arthritis but didn't find the joint pain intolerable.

laughinggull - you totally got this, girl! Glad you are seeing a LE specialist, and remember to take it easy initially. I experienced a lot of tingling and numbness after my ALND, which was done 5 weeks after my mastectomy. I was surprised at how irritating that feeling was, and found preventing skin to skin contact between the inner bicep and the underarm and just below it helped a lot. The numbness and tingling dissipated very slowly, and this is normal, and eventually it was gone completely. I was fortunate not to require rads despite the finding of additional cancer in the ALND surgery - I did chemo adjuvently.

deni - have a great trip!

TriplePHtown

Hi, this is my first time posting a question to the forum and I certainly appreciate all the info I have learned from you during this journey. I want to ask women in the triple positive group with sentinel lymph node involvement if their doctors recommended lumpectomy or mastectomy. My oncologist said outcomes were the same but I need to ask him if that is a study of all breast patients or triple positive patients. I just finished chemo yesterday and meet with a surgeon early next week. Will have follow up mammogram/ultrasounds sometime after that which possibly could affect the decision. My original pathology was pretty aggressive looking. Any info & insights would be helpful.

coachvicky

JVP ... I don't know the technical answer to your question. I hope others do.

You wrote: Now they're telling me the response is good and I feel like everyone is painting a sunny picture but no one is telling me the truth.

If I learned ANYTHING on this journey, it was to listen to my gut. For me, when it didn't feel right with my first Oncologist, I sucked it up. He did everything technically right but it wasn't feeling right to me.

I have a new Oncologist now and it just feels better.

I hope this is helpful.

Vicky

SpecialK

triple - Welcome! Sorry you have to be here, but this is a great group - happy to help in any way! I am pretty sure your doctor was referring to women of all diagnoses regarding the comparison of lumpectomy/radiation to mastectomy and overall survival (OS), although my understanding of fairly recent SEER data shows no significant difference in local recurrence rate by subtype with either surgery. I am not sure that enough studies have necessarily stratified surgical choice by subtype, although some drug studies that have employed neoadjuvent administration have looked at pCR rates versus surgical choice, with fewer choosing lumpectomy that obtained complete response by about 10%. You will find the full spectrum of surgical choices among the triple positive population on this site, and among the mastectomy patients you will see both unilateral mastectomy and bi-lateral mastectomy, reconstruction and not. Making the choice of surgery type is very personal and there are a myriad of valid reasons for all choices. Your clinical presentation and individual tumor characteristics should be taken into consideration by your surgeon, but ask him/her to defend the recommendation by explaining fully why it is being made. I was originally told I could have a lumpectomy by my very experienced oncological breast surgeon. I did some soul searching while waiting for my BRCA blood test results, since my surgeon would not make a final recommendation until we had that info as I am adopted with no available family medical information. I chose bi-lateral skin and nipple sparing mastectomy with immediate tissue expander placement because I image so poorly - my palpable 2.6cm tumor was never seen on mammo, I had a large-ish tumor and a small-ish breast, and I had already had a lot of surveillance and intervention on both "busy" breasts up to that point. I was treated prior to the approval of Perjeta for early stage, so I had surgery first. What came as a surprise was the positive SNB, the duct and lobule involvement, the amount of DCIS with the IDC in the cancer side, and extensive ADH and ALH in the "prophy" side. Further surprise came with additional much larger nodal cancer during ALND surgery 5 weeks later - never palpated or shown on imaging. Not saying any of this to sway you either way - just laying out my story. Despite some involved recon issues, I have no regrets about my decision.

TriplePHtown

Thank you for the quick response SpecialK. Lots to think about. My pathology is similar to yours so it brings up some great discussion points for my surgeon. I have ready many of your past posts and appreciate all your openness and help. Thank you and take care

ElaineTherese

JVP,

Hmmm....you haven't had your surgery yet, have you? I would wait until the surgical pathology before deciding on the outcome of chemo. MRIs aren't always accurate in showing residual cancer. For example, sometimes they are just showing dead cancer cells, not active cancer cells.

Some people do get adjuvant IV chemo if neoadjuvant chemo didn't get a great response. Some Stage III ladies also do Xeloda (chemo pill) if neoadjuvant chemo didn't get a great response. But, you'll be getting adjuvant Herceptin and can take a hormonal; many women doing adjuvant IV chemo and Xeloda are triple negative patients who don't have other options post-surgery.

As for whether or not you want a new MO, that's up to you. You're going to be seeing this person for several years, so you might as well pick someone who you're comfortable with. ((Hugs))

PoseyGirl

Hi Ladies...I've been gone for about 12 days and wow - so much action here! I feel so badly that I have nothing helpful to say on topics such as LE, lumpectomy versus mastectomy, chemo regimens and more. I'm so glad there are ladies here that know quite a bit about these paths and decisions.

Laughing Gull - you've reached a decision and best wishes to you! I wish you well on the next phase here, and the main thing is that you feel good and solid about your final choice. You've given it a lot of thought and that is much more than I gave it. That said, I really had no choice - it was mastectomy for me.

Taco - WOW. 52 years. I cannot even fathom this. Congratulations to you on such a milestone. Are your husband and you looking alike yet? lol .

JVP, I feel your agony. When I was 7 treatments in- so, one away from being done - my oncologist didn't feel any palpable change in the tumour size (there had been some change after the second and third treatments). Imaging didn't show much change either. I was frantic because it seemed like I'd had about a 20% change maximum. I remember literally almost passing out in my M.O.'s office. When I met with my breast surgeon prior to surgery, he said to me 'you actually might be pleasantly surprised; I think it's going quite well". My pathology told me that I had a complete response. I was in so much shock that to this day I harbor this intense secret fear that my tissue was mixed up with someone else's after surgery. So, all this is to say that you don't know until surgery is done. And, if you have a 50% response, I think they almost expect this when women are hormone positive. Obviously everyone wants more response, but I was never led to believe this was highly likely. They said that besides surgery being the 'big money', it would be follow up treatment. I was asking friends who knew Oncologists to ask if I could have access to more chemo. I think Vicky is so right that if you want to explore more treatment when they know more, keep pushing until you get that answer.

I've been lying a bit low, as I was feeling crummy. In early April I felt a headache coming on which was persistent. Prior to that, I'd had 2 weeks of all-body itching. After a week of the headache, some dizziness settle in. And then a week after that neuropathic symptoms all over my body - burning patches, twitching, tingling, chills, prickling/itching (less than the initial 2 weeks). I also felt some malaise and chills. When the headaches persisted for two weeks, they ordered a brain MRI for me which I had this week. Thankfully, that is clear. 6 years ago I tango'ed with some kind of autoimmune flare. At that time, I had an autoimmune panel done and tested positive for two antibodies that are connected to Sjogren's syndrome. After a couple months, I was pretty much done with that and over the intervening years, I just have the tiniest episodes of twitches, etc. So I wasn't sure if this is the same thing. I'm presuming that it is. I was getting pretty worried with the headaches and disequilibrium. Today, the nurse told me that they saw age-related changes in my brain. A few months ago I had a scan due to pain in my upper thoracic spine...disk degeneration. So, basically, scans show us everything, including the aging process. I'm turning 50 years old next year, so it's nice to know my body is falling apart . In all seriousness, I'm feeling relief tonight and I know you all can relate.

I hope everyone is doing well. There are several new 'faces' on the board...I guess lots of people are lurking and jump in when they feel comfortable enough or have a need to. Welcome to the board, new TP's. There are insightful people here

Sleep well,

kae_md99

JVP,

my MRI post treatment showed my tumor decreased in half.i did not feel the mass anymore after the treatments.. after surgery, the "mass" seen in the MRI was actually the tumor bed with only residual cells. i did not get PCR but i got a pretty good response.. you will know for sure after surgery how well the chemo worked for you.HTH..

Taco1946

Posey - DH and I DID look alike - when I was bald! LOL.

Demi - can't say I know where Hartland is but yes, we have good Wisconsin memories. We met on a blind date in college and married in the college chapel the summer I graduated.

Must admit that I never believed I would be married more than 50 years. Ken has a terrible family heart history and we were excited when we got to 40. Like BC, lots of advances have been made in heart disease and we are looking forward to more international travel this summer to celebrate the end of herceptin (now if I could just pick something for the end of AI's but probably by that time we will need a caretaker to go with us). Like many here, life has presented its challenges for us but we are grateful to be plodding on together.

Happy weekend everyone.

Gudrun

JVP: my daughter (see profile below) didn't get a pcr. There were remaining invasive tumor cells with a huge newly discovered DCIS. She was told that HER2 pos/HR+ was not that likely to respond as HER2 pos/HR- does. Further, that pcr in our hormone positive case is not that significantly important for a good prognosis. After surgery they also examined the Ki67 stating it was a meaningful prognostic value: The lower the better. G

PoseyGirl

For those of you who have had heart issues in Herceptin, and those of you who have yet to receive it...something to ask your MO about?

http://www.wkyt.com/content/news/University-of-Kentucky-releases-life-saving-medication-combo-for-breast-cancer-patients-479920483.html