Here I am

NotVeryBrave

The risk for getting breast cancer is having breasts and men can get breast cancer as well.

My MO said there's been some recent studies that show perhaps even better reduction of local recurrence with lumpectomy and radiation. It appears to be related to the effects of irradiation of the whole breast.

BMX does remove as much breast tissue as possible, thereby reducing that risk. But it's never zero. And if lymph nodes are involved or the tumor is close to the chest wall - radiation is still needed.

Part of the decision is based on the health of the other breast. I had some areas they had been watching on the good side. Also - a lumpectomy's results may be more pleasing if the breast is larger or the tumor is on the outer aspect or lower portion.

Spookiesmom

I told my BS both had to go, I wasn't going to do this again. He mumbled something about recurrence rates, I held firm. I didn't want more surgeries, dr visits and bills. Plus the very real chance of failure with recon. I don't mind being flat. If somebody else does, that's their problem. As Chi said, screw 'em.

As has been said, it's a very personal choice, what works for you is best for you. No judgement here.

Happy to hear your daughter has backed off a bit.

MinusTwo

Part of your decision about MX or BMX vs LX depends on your age. And if you are adamant about having continued sexual sensations from your breasts.

I felt like Spookie's Mom - get it done & over with. Lucky I did because they found problems with the "good" breast. I also had TEs and reconstruction because I wanted to be able to pull on my clothes & go. I personally could not have dealt with a prosthesis, although many women do. Nor could I have lived flat. Nor could I have dealt with a chunk out of my lovely breasts and continued worry every 6 months. I was called back for additional mammograms & ultrasound every single year for 30 years and just couldn't keep going that route.

Glad you had some good sleep. It does make a difference. Sounds like a good way to interact with your daughter for now.

Brightness456

Good morning and thanks for continuing to help. I got together with friends last night. They agreed that I should decide what's best for me regarding mood stabilizer. They also said they would help with transportation if I needed it, although I don't know if I can really count on them. I'm going to walk with a friend today, then try to be productive around the house.

The surgery still scares me, butmthe chemo scares me too. Still, I'm holding my own for now

Spookiesmom

Good to hear. Happy Saturday.

bluepearl

We all get scared of chemo. However, some women continue to work while taking it and most feel fatigue rather than those horrible vomiting sessions you see on TV. You won't end dating forever. Any man who values breasts over the actually woman....well, you don't want him anyways. Lean on your friends. They get upset when you don't. Surgery is always scary but getting that crap cancer out of you is more important. It gets better. I had breast cancer again two years later and functioned much better. I am also on a low dose antidepressant. I also went on a ketogenic diet/Banting diet which seems to really improve your emotional status and your sleep patterns....and they make your chemo work better as well....look that one up "keto diet and chemotherapy" should come up. Keep on keeping on...it will get better.

Leatherette

I had a mastectomy instead of a lumpectomy because my IDC was hiding inside 6cm of DCIS, and a lumpectomy would have potentially been more disfiguring than a mastectomy. I was also scared of having to go back in for addisurgery if they did not get clean margins. I am hormone negative and her2+, like you.

Brightness456

Hi everyone. I was able to have a happy-ish and productive Saturday. One of my children sent out a group text to each of us with a meme about an inside family joke. I haven't heard from any of them otherwise. It hurts, as this is not at all how we normally deal with a family crisis. We normally form a circle of safety around whomever is vulnerable, providing comfort and strength. I can't understand how they could be so cold to me.

I'm thinking more and more about just having a BMX and getting it over with. I can't stand the thought of doing future mammos or possibly facing this ever again. From what I've learned here, I know cancer can still come back even after the breasts are gone, but the risk should be lower. The thought of starting this nightmare over from the beginning again is unacceptable. Still, I certainly don't want to over react either, which might be the case right now.

As for dating ever again, at my age, 52, it's already hard. I live in a rural area. I've met multiple men from a dating site I tried, but none of them interested me, so I've already accepted that it may not happen for me. It's sad, but normally I would remind myself how fortunate I was to have a loving family, great friends and my health. Well, I seem to be down to only one of those now. I have to believe this is not how my family will continue to treat me. I raised my children better than this.

I'm so thankful to have this site.

Spookiesmom

There are threads here, the titles escape me, about how family and friends react to the patient. Look around for them, see how others deal.

Or maybe the Mods will step in and help

Icietla

Here is one of those threads__

https://community.breastcancer.org/forum/102/topics/798609?page=1

Icietla

There is much to consider in making the choice between surgery types. Each person is unique and has his or her own considerations weighing in the decision. The right choice is the one you make for yourself.

See Beesie's post here__

https://community.breastcancer.org/forum/91/topics/849193?page=1#post_4828669

Brightness456

Well now I have another question. I did some reading around the forum today and saw that there is a current class action lawsuit against taxotere for possible permanent hair loss, then I also read about someone considering a lawsuit against them for permanent chemo brain and multiple people said they have the same problem. If the side effects of taxotere are so potentially damaging, and apparently taxol is as effective, why is taxotere still used? Also, wow, chemo sounds incredibly dangerous! How can there not be a less dangerous way to fight this cancer? Does slowing down the infusion time really cut down on side effects? I think I readthat somewhere.

Spookiesmom

I lost my hair on A/C. Then I had taxotere. It never came back as it was before chemo. Was the taxotere to blame? I really don't know. Am I part of that lawsuit? No. I could have joined but didn't.

Chemo is rough but doable. Aside from thin hair and some neuropathy I don't have any lingering se's.

I'd rather be alive, and know I'd done everything I could.

I've heard cold caps can help prevent hair loss, that option wasn't widely available when I did chemo.

mustlovepoodles

Brightness, i learmed quickly tmy friends would be ten times more helpful than my family. My DH was really the only family member that stood with me day in and day out. Although, I have to give my son props for taking me to the ER one night when his dad was unable to. They kept me until morning on IVs and medications and Son never batted an eye.

As for my BMX, I found out after my LX that I have TWO gene mutations that cause BC. We all thought it best to remove them before they did any more damage. If not for that, I would have stuck with the LX, rads, and chemo.

MinusTwo

Brightness - yup, chemo has some serious side effects. You need to discuss them with your MO. Most MOs will moderate or lessen the dose if the side effects get troublesome. I too wanted to do what ever i could to make sure I could continue with my life. I have some neuropathy from the Taxotere- but my MO gave me the choice to stop or go ahead & I choose to continue. My hair came back twice as thick - and brown when it was going grey. Now cold caps are more prevalent. Also while permanent hair loss is possible, it is not true for most of us. I used Latisse on my eyebrows & lashes so they never fell out - but they are thinner than they were. My toe nails were a mess for a year, but that was because i didn't ice my toes for the first infusion - just my fingers. Yes I forgot things for awhile, but chemo brain has become a joke now & my excuse whenever I can't remember.

Go ahead and educate yourself even though you read will probably be the worst case scenario. Make lists and talk to your doc about your concerns. That way you'll be prepared when you have to make choices.

About your family... Go ahead for now & take care of you first. Sorry they aren't there for you, but it's OK that you're learning to be strong & move ahead. There will be plenty of time to explain it all once you have your plans in place.

Brightness456

It seems if they infuse you over hours instead of faster, that might help with side effects. Is that true or am I mistaken? I'm very concerned about how brutal it might be.

My daughters finally reached out yesterday. As is the pattern in our family, they each vented and I listened, then was able to genuinely apologize for my part in things (I guess I let this pattern develop and I don't have the energy to break that chain right now), then I told them each that I cannot have this drama in my life right now, that I love them very much, but I'd rather they stay back if they can't use a kind and respectful voice with me. I reminded them that I'm trying to be positive and I can't put them and their needs ahead of mine right now, so it was okay to step back if it's too much for them, but I have to make me my first priority right now and for some time to come. My oldest handled it pretty well. I actually almost wish my youngest wasn't coming home because she'll be in my house all the time, draining me. I do appreciate the help she'll offer right after surgery and I have missed her, but I guess I can't deny that these kids, even as adults, take a lot of my energy. This is truly changing my life forever.

My sister was another matter. Apparently she's become a hysterical mess, calling my oldest to the point that she then had to call my niece to tell her to take care of her mom. I texted my siste last night and she seems stuck on how I wasn't nice enough to her and told her she wasn't supporting me. I may have said that regarding her also pushing anxiety meds and I suppose I need to clarify and apologize for that, but I'm disappointed that even with a very valid reason to get upset, I'm still held to the high standard of not saying anything unkind, while she hasn't acknowledged that she was screaming at me while I was quietly telling her to please try to calm down.

I've worked hard to escape this kind of drama in my life after my marriage ended, and now because I was down and vulnerable, and couldn't be at my best, it's back full force. I'm realizing how much effort I've been putting into keeping others happy so I could have peace. Now that I'm focusing on me, it's all falling apart. How very sad.

Brightness456

Thanks kb. I had a busy day. I worked this morning and then the nurse navigator from the MOs office called. She was so helpful and clarified a lot for me. She spent almost an hour on the phone with me. It was so nice to have someone explain things in a normal way. Then I called the PS office for some clarification and if the genetic test is negative, I think I'm good for a lumpectomy rather than mastectomy.

The nurse navigator did tell me that I should prepare to lose my hair. She said all their patients do. She gave me the number for a local place that works with BC patients to get wigs. I'm trying to get an appointment to see them. I've also been researching hats and turbans etc, which feels a little funny because I'm normally a long pony tail girl.

I'm trying to be proactive and strong. All of you have helped me so much. It's still a scary road ahead though.

MTwoman

Brightness, Nurse navigators are awesome! So glad you have one to work with. It is a scary road, but you are now part of a community that has women and men who've already traveled it and can support you on your journey. You can do this. ((hugs))

Brightness456

My daughter sent me something this morning that said stage 0&1 often doesn't require chemo, just surgery and radiation (just-ha!).I'm stage 1. I think my tumor was 7mm when they found it late June.

Does anyone know anything about this? Obviously it would be such a gift to find out I don't need chemo. I don't expect that will happen for me, but is there an explanation. Has anyone else heard this?

sweetp6217

Dear Brightness4,

Sorry that it took me so long to notice and read through all of your story/posts and of the sisters. I was diagnosed on 7/7 with a 2"+ lump plus lymph node(s). Her+2, Invasive. I really feel for you and I'm going to have to get some more tissues, but I'm so glad that you came here to share and receive consolation and love from the many.

A couple of things. When I spoke to my hemo/onch doctor, he asked if I was in menopause, then caught himself since I had a hysterectomy in January of this year. (Prior to that surgery, my surgeon asked if i wanted to keep my ovaries, I was on the fence. She said that keeping them may extend life, not keeping them would lessen the chance of breast cancer). No BC on my Mother's side so of course I said keep 'em. Fast forward to now? Hemo doc says WHY? Result? They are going to take out my ovary (one had fibroids and was taken out) one of these days, laposcipically.

Next, has your nurse mentioned financing? Even though your husband is helping you out, my nurse told me about some assistance that could really help. Disclaimer: your insurance needs to be commercial, not gov. funded etc. Here's the link: https://www.copayassistancenow.com/#/herceptin/copay-card and the link for the terms https://www.copayassistancenow.com/#/terms-conditions .

Before launching into that coupon sign-up, please mention this to your nurse. Sometimes, they will have someone help you with it, not to mention, (not everyone is the same) but , she told me not to pay the bills off fast. I personally have a high deductible and the doctors and the hospital, so far have billed me though the same company/website. They have 30 days, 60 days and 90 days to pay. How the coupon may work is bring down those Herceptin & P (not chemo) payments to something far more reasonable. You have time to do this investigation for yourself. Also, I'm not saying that you need this.

Also, I will need to speak with the financial wiz for all of this (connected with the hospital) so that no one can apply pressure to me about this plan.

Speaking of which, I begin Chemo on the 27th, six sessions three weeks apart, then surgery, then just Herceptin and P for the rest of the year. 1 year total with treatments.

Hang in there Brightness, I'm rooting for you! HUGS and hearts )))

TWills

Brightness456, not to rush things and hopefully you won't need it but just to ease your mind, there are ponytail options out there. I am also a ponytail girl and I love mine. I researched it before I knew for sure I would have chemo just to know my options, it gave me piece of mind. It's called Chemo Diva or Hip Hats with Hair, same company but slightly different product. There are other Hats with Hair out there but this one is different. Hip Hats With Hair has tons of color and texture options. They will send you swatches for $1 each so you can see and feel it before you buy it. They even have human hair, which is what I ordered, and I colored it to match my real hair, I'm a hairstylist. I wear it more than my $2000 full wig because it so much more comfortable/easier and so much cooler. Anyway, hope you don't need it, but if you do there are options:)

MTwoman

Brightness, to answer your question: Stage 0 (or pure DCIS) does not by NCCN standards include chemo in it's treatment protocols (strictly surgery, rads and/or hormonal treatment options).

For Stage 1 (meeting certain criteria like: Stage I or II, invasive, smaller than 5 cm and ER/PR+ see http://www.breastcancer.org/symptoms/testing/types/mammaprint ) the Mammaprint or Oncotype tests (http://www.breastcancer.org/symptoms/diagnosis/genomic_assays ) can be used to estimate recurrence risk. If the recurrence risk is low, then the risks of chemo are thought to outweigh the benefit and is not recommended. Please clarify and talk about this with your team.

ElaineTherese

HI!

If your lump is HER2+ and bigger than 5 mm, your doctors will probably recommend Herceptin and Taxol for twelve weeks. HER2+ is an aggressive form of breast cancer, but if you do Herceptin, you have very good chances for a good outcome.

Brightness456

Well wow! I met with the MO today and the whole plan changed. She said based on my very high KI67, we should start chemo right away. I'm getting a port and a heart check in the next few days and will likely start chemo by the end of the month. I'm getting 4 cycles of TCHP over 12 weeks, then I'll go for surgery and radiation. Then I should not need more chemo. She said I will definitely lose my hair, but she's confident she can help me manage the other side effects.

I've lost confidence in my BS, so the MO is going to try to get me in to see someone else. The MO is also going to try to get my case before their tumor board for an additional opinion. She seemed very smart and personable, and she said if it was her facing this, this is definitely the path she would take. I have confidence in her.

I'm getting my hair cut short next week and I'm meeting with the local breast cancer association to discuss wigs and head covers. I'm scared, but moving forward. I really have no other choice.

TWills

Brightness456, I hope having a plan will bring you some comfort. Thinking of you:):)

MTwoman

Brightness, so very glad you had a connection with your MO and have a good plan in place. Your post already seems more empowered. Moving ahead is good and having a provider you have confidence in who communicates with you is priceless. You got this!

Spookiesmom

Sounds good. I like the tumor board idea. My case went there. Gives you more eyes and ears. You won't be there of course, all dr involved will be on the same page.

Port is done out patient. Somebody will need to drive you. Some ladies are able to discuss with surgeon placement prior to getting it. Mine is in a good spot, not visible. I still have it 5 years later.

Brightness456

Oh my gosh, how can this be my life.

The MO just called. She said after we left the appointment, she looked more closely at the new records I was able to provide that for whatever reason, the BS office hadn't sent. First, she said I would not qualify for perjeta under my insurance because my tumor isn't big enough (which is good), so if I need chemo now it will be just TCH. She said if because after looking more closely at my MRI (which hadn't even been sent to her office, but I had a copy) my tumor appears to be growing slowly rather than aggressively, so the KI67 may not be correct. If it's growing slowly, it may be best to do surgery first.

She was able to get me a consult with an MO and a BS at Univ of Md. Both doctors specialize in just breast cancer and she knows and respects both, so they'll be good second opinions. Also, they can get my films from the other hospital so they'll be able to really seewhat's going on.

So basically, I still don't have a plan, but I'm much more confident in this doctor. I'm going to try not to dwell on this this evening and relax instead. But seriously, what happens to the women who don't know to seek out information and be proactive? This is scary.

mustlovepoodles

I like your MO--not afraid to dig deep for the right treatment for you. Hang in there. I think you're in good hands.

MTwoman

I like her too! She seems very sharp and GOOD FOR YOU for bringing your own copies of records. Getting a second opinion from others she respects sounds like a good way for you to collect information and get a good solid plan in place.