My (perhaps controversial) thoughts as a "newbie" to CA.

Trill1943

Hi ChiSandy--

Thanks so much for this full report and all your excellent advice and also your story!

I live in Baltimore and am planning on going to the Hoffberger Breast Center at Mercy Hospital. The doctor I'm seeing is the director of the Center and his specialty is breasts and he has pretty good credentials (began as Chief Resident at Memorial Sloan-Kettering) and it says he led the charge to introduce Intra-Operative Radiotherapy to MD hospitals, Mercy being the 1st.

He's a surgeon but you're saying I should see a medical oncologist also, right? See them after surgical path is in, not solely be led by the surgeon....locate a good one at Mercy...ok...will do ...

I don't care about reconstruction or anything. I'll remove what they say I should remove.

I'm sure I'll be back with you guys on this stuff. Just beginning. Thanks again! You all are so wonderful... I can't believe this gold mine I tripped into....

Trill

Trill1943

Italychick--Sounds like you move at the same speed I do! Four opinions before anything else! Well, I admire your conservative approach...that's how I feel..am glad to know yours had been there that long and was slow-growing..unfortunately by not getting mammos I don't have comparisons...

It's funny--I tried calling four friends tonight to talk about this--and no one picked up. Did they all turn in early--or did they know the biopsy results might be in by now? Just coincidence?

You know, I actually recall being as scared of OTHER'S reports etc as my own...

C is scary to many many people....still.....

Tomboy

Trill, the more you come here, the more you will learn! My friend went through chemo ten years before I did, and it has changed a lot in those ten years! Course, I don't know if she even took the nausea meds that were probably prescribed to her. But I think they work very well. i will tell you though that it is not a pretty way to die. It went to my friends brain, and basically, who she was went away. 72 is still pretty young in my book. Wishing you all the best, for what ever you decide.

Trill1943

Dear mvspaulding--

Thanks!

Yes, it's a great group and I'm lucky to have found it!

Your little sunflower picture gave me the first smile of this long day..now morning...trill

Trill1943

Dear Tomboy--Thanks for your post. I've learned a lot already on this site. A great group here. Am glad to hear that chemo's not so horrific....you're another person to let me know...appreciate it! trill

ChiSandy

One thing that hasn’t been mentioned here is that generally, the older you are when first diagnosed--especially if it’s early-stage--the more slowly it grows.....and if treated, the more likely you are to live out your statistical life expectancy (cancer or not).

Meow13

Trill, I know how you feel, I wouldn't want discomfort or pain that could go on for years especially at 72. Having surgery was easy for me, I bounced right back with minor discomfort. The drugs were not too bad, I was able to take codine without dizzy pukyness. Because I had mastectomy I avoided radiation, had a really good DIEP reconstruction. I didn't do chemo I did hormone therapy. In your case, if you do decide chemo CMF is the ""easier" but longer treatment. You can do cold caps of keep most of your hair. CMF doesn't always result in air loss.

Good luck.

Trill1943

Dear ChiSandy-

What a great story! What a piece of wisdom to come across like that--talk about serendipity! Or was someone watching out for you?

Just breathe.

I tell myself Be Here Now.

In the moment.

Hard to do today.

Earlier, I made a green drink in the blender--the kale, the broccoli, the carrots, the grapes--and blended them and then remembered the banana I meant to put in. I dropped it in and then came in here to post my long post and just now grabbed up the blender base with the un-drunk green drink and was sipping through a straw when I encountered a big lump of something. Having lumps of all types on the brain, I thought it was something I'd manifested from my Obsession-Of-The-Day: a big lump in the blender!

But it was the banana!

I dropped it in the blender but forgot to hit Blend!

Trill

Trill1943

ChiSandy--I did hear that somewhere. Will tuck that under my pillow. Trill

Trill1943

Meow13: Thanks for the tips! I did see a thing about cold caps for hair loss. Have a lot to decide about but this site has sure helped--it's calmed me down a lot...bye...trill

Sjacobs146

Trill - great advice from all the ladies here so far. I would add that dying from cancer is no picnic either. A dear friend of mine died from Breast Cancer this past summer. You will likely not go quietly into that good night. The Cancer metastasizes to your bones, brain, lungs, liver. I'm sure that there are conservative approaches that you will be able to take that will spare you the worst while still extending your life.

I was terrified of surgery as well, I hate general anesthesia, but I had an excellent anesthesiologist who listened to my concerns and it turned out better than expected. You mentioned that you think that you'll need chemo and radiation, but you really won't know that until after the surgery. Please keep an open mind, and definitely share your concerns with your doctors. My MO is amazing. She recommended chemo, but she said that it was my choice, and that once I started, I could still choose to stop. I guess what I'm saying is that The recommended treatments might not be as bad as you think. Good luck with all of your appointments.

octogirl

Trill, you've gotten great advice here so far, so while I mostly wanted to just pipe in here and add my support during this very tough early times, a few points that I wanted to reiterate:

As might have been stated above, but not sure: the path reports you get from the MRI, US etc are helpful information, but you won't get a final, determinative report on the pathology of the tumor until after surgery. This could change the recommendations for treatment significantly. My pathology did change somewhat. One more reason to at least go through surgery before making a final decision on your treatment path and that is one reason you need to consult with the MO (short speak around here for oncologist) in addition to the surgeon. However, no rush to that: while there are advantages to seeing MO early, I didn't actually choose mine until after surgery (lumpectomy in my case which I have been very happy with). Oh, and if you do a mastectomy and choose no reconstruction, you've eliminated a lot of the surgery there already.

I just finished chemo. It was no picnic, but it wasn't awful, and while I had occasional bouts of both constipation and diarrhea, I never was nauseated other than a slight queazy feeling in the am that went away as soon as I got food in my stomach. I worked through chemo (I am almost 62). My worst complaints were hair loss, a bit of fatigue, and taste issues that came and went and were a bit unpredictable. (Sometimes I couldn't taste salt, sometimes I couldn't taste sweet, some textures bothered me. But I never lost my appetite.).

I will tell you about radiation when I finish that in January. Yes, it is a slog. But that leads me to one final note: the women (and a few men) on this site are incredibly helpful and supportive! I've made friends I know I will have for life, in just a few months, and they GET IT. Explore the boards for the topics you are interested in, there is a lot of great helpful information about there. And talk to the docs. and BREATHE. We are here for you. Let us know how it goes.

HUGS!

Octogirl

GraceB1

I was one of the ones that always got nauseated. One Dr said that chemo side effects are on a bell curve, some people get few while others get the far end and most end up in the middle somewhere. I was on the far end. Taxotere was much worse than AC but most people say the opposite. I couldn't have worked if my life depended on it. Yes, you'll lose your sense of smell and taste for a couple of months. They do come back. I always got sick after surgery too. I had reconstruction done in June and didn't get sick for the first time. The difference was an antiemtic called emend. They use it a lot for chemo patients but it was the first time I had it for surgery. It worked like a charm. When I had my hip replacement two weeks ago I requested that they give me emend and again it worked. This whole process is not fun but it is doable. I hope that you can find a path and be at peace with your decisions for treatment.

Trill1943

Hi sjacobs146-- Do so appreciate hearing from all of you!

No, I know dying from cancer is not a nice way to go...lost an aunt and two close friends to it and know what that process is like...I know that panic has led me--to a degree--to some of my thinking.

But I also want to weigh advantages, side effects, long-term prognosis, my age--etc..all of that.

There has been much talk about physician assisted suicide and other means by which one could terminate one's life if things got entirely too difficult. At my age, I'd be on board with that. I have no fear of death---in my mind it's nothing but a dreamless sleep--but do fear a wide-awake, slow, and painful decline with no hope of reversal. THAT to me is real horror. So I really doubt that if I did nothing or next to nothing and let this thing progress it would not advance very far before I'd find a way to end it.

This is grim conversation, I know, and makes me depressed just writing about it. But I think that very fact makes it important--to look the thing in the eye, call it what it is, do what one can do to realistically limit or remove it, and to understand that when things get too bad there are things that can be done.

Death isn't an enemy but we tend to think of it that way. But it's a natural part of life. Life I think would be pretty unbearable if we were suddenly all granted eternal life here on earth. We'd rapidly go nuts!

Thanks for writing to me!

Trill

ruthbru

Your cat is going to be very mad at you if you die! (I hope a note of humor is okay but I am a 'cat lady' so know they don't like anything that messes up their schedules ).

Trill1943

Hi dear Octogirl-- Very nice hearing from you and am happy to add you to my growing list of new friends with whom I now share common ground.

This site is incredible! Wow!

Yes, I know that the MO, as you call him/her, will come into play after there is more to go on--the surgical biopsy. I still haven't read or seen the biopsy report that my doc has seen. Hope to get a copy soon. A friend who is also my therapist is getting a copy and going over it in detail, something she did with her 83 year old mom when she developed bc not that long ago.And this was helpful to all. So I'm grateful for all this input I'm getting. It's keeping my mind busy enough processing it to keep the panicky thoughts at bay.

I do wish you good luck as you progress with this. You sound strong and vibrant--and make the treatments sound almost palatable--well, sorta.

I'll get back to everybody down the road. In the meantime, many thanks.

Trill

Trill1943

Dear GraceB1-- Really am glad to know about this emend stuff. Gee, that sounds great.

I've been lacking in a good sense of smell and taste since the sinus problems started-so that would be easy for me. Can't miss what you don't have in the first place, and cleaning the cat box is a breeze when you can't whiff it...

Appreciate your thoughts and words! So grateful to you and to this fantastic community. You all make life worth living.

Trill

Trill1943

Dear Ruthbru, I love you already!

Miss Pantaloon has been suspecting that I'm upset about something. All yesterday she saw me pacing and talking to myself and I could see she was worried. I had to comb her and curl her up in my lap and she let her head flop back so I could scratch her throat and after all that she told me she was OK and was happy I was my old self again.

Yes, she would be very mad with me..

Trill

LindaKR

Trill - my PCP made the referral to the surgeon, who then took my info to a tumor board, scheduled surgery and sent the referral on to the oncologists office - the medical oncologist and radiation oncologist were in the same practice.  I saw the surgeon first, so had surgery first, sometimes, depending on size and type of tumor (and I'm sure doctor preference), they do chemo first.  If you're not sure whether or not you want chemo, ask for the surgery first that way you will know size/type/involvement of cancer, etc... before making the decision to have chemo or rads or.....  I believe that the more information available the better decision I can make.  If you already have the appointments, be sure to call and see if they all have copies of your pathology from the biopsy.  I asked for copies of everything and keep them still.

Also, radiation wasn't too bad either, most women breeze through it with a little skin issue and a little fatigue.  If you have a lumpectomy they will want to do rads for sure (but you can always refuse, ask for prognosis numbers with and without rads), if you do a mastectomy they will only want to do radiation if the tumor is large or if there is multiple lymph node involvement (mine was both large and many lymph nodes, so I had MX and rads). 

Please let us know how it goes and feel free to ask any question - we are a fount of knowledge. 

And something I learned early on - no question is a stupid question, ask what you need to be comfortable with your decisions.  And if your doctor doesn't like you asking questions or answer them, get a new doctor.  You want someone that you are comfortable with and confident with.

LindaKR

I just want to add I had a mastectomy because of location and size of the tumor, also known lymph involvement prior to surgery, we talked lumpectomy, but he said that he knew he couldn't get clear margins with LX and that he'd have to take 3/4 of my breast at least.  The pathology report found more cancer on the other side of my breast that wasn't know before MX (Mastectomy).  I chose to keep my healthy breast (after having a diagnostic breast MRI) because the risk of contralateral breast cancer for me is less then the risk of the cancer coming back in my bones, lungs liver or brain. I've considered getting one for symmetry and so that I don't need a prosthetic - (reconstruction was never in the cards for me, I wasn't interested and found out that it would not be very doable either). I thought it might help you to know the reasons that we did things, they may or may not apply to your situation.

ruthbru

This just came out on the BCO 'Breaking News' section (notice in the TAGS, there is one for a '65 and older' section you might want to check out):

Radiation After Lumpectomy Improves Survival of Older Women Diagnosed With Triple-Negative Disease

Save as FavoriteThis article may not be highly relevant for you (My Diagnoses, My Treatments, and Personal Info areas, this article may not be highly relevant to your current situation. " class="with-tooltip desktop-tooltip">Why?)

• TOPIC: Diagnosis and Radiation Therapy
• TAGS: Early-stage: Stage IA, Early-stage: Stage IB, Early-stage: Stage IIA, Early-stage: Stage IIB, Triple Negative Breast Cancer, 65 and older, Estrogen-Receptor Negative, Progesterone-Receptor Negative,HER2/neu Negative Cancer, Radiation to the Breast, Radiation After Surgery (Adjuvant), Planning/Considering Radiation, Whole-Breast External Radiation, and 65 and older

Triple-negative breast cancer is:

• estrogen-receptor-negative
• progesterone-receptor-negative
• HER2-negative

So the growth of triple-negative disease isn't driven by the hormones estrogen or progesterone or by the presence of too many HER2 receptors. This means that triple-negative breast cancer doesn't respond to hormonal therapy (such as tamoxifen or an aromatase inhibitor) or therapies that target HER2 receptors, such as Herceptin (chemical name: trastuzumab), Tykerb (chemical name: lapatinib), Perjeta (chemical name: pertuzumab), or Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine).

About 15% to 20% of breast cancers -- more than one out of every 10 -- are triple-negative. Triple-negative breast cancer tends to be more aggressive than other types of breast cancer.

Triple-negative breast cancer usually is treated with a combination of surgery, radiation therapy, and chemotherapy.

A study has found that women age 70 and older diagnosed with early-stage, triple-negative breast cancer who had radiation after lumpectomy were 6 times more likely to be alive than women who didn't have radiation after lumpectomy.

This is the first study to look at how much radiation after lumpectomy improved survival in older women diagnosed with triple-negative disease.

Doctors call treatments given after surgery adjuvant treatments.

The research was presented on Sept. 25, 2015 at the American Society of Clinical Oncology Breast Cancer Symposium in San Francisco. Read the abstract of "Outcomes associated with adjuvant radiation after lumpectomy for elderly women with T1-2N0M0 triple-negative breast cancer: SEER analysis."

To do the study, the researchers downloaded information from the SEER databases. The SEER databases are large registries of cancer cases from sources throughout the United States maintained by the National Institutes of Health.

The researchers looked at the records of 974 women ages 70 and older who were diagnosed with early-stage, triple-negative breast cancer between 2010 and 2011:

• all the women had lumpectomy to remove the cancer
• 662 women (68%) had radiation after lumpectomy

The researchers compared overall survival and disease-specific survival among the two treatment groups, controlling for other factors such as whether the women had chemotherapy or not, the grade of the cancer, the women's ages, and whether the women had been diagnosed with other types of cancer.

Overall survival is how long the women lived, whether or not the cancer came back (recurred). Disease-specific survival means the researchers looked at how many women didn't die from breast cancer.

About 2 years after treatment, women who had lumpectomy plus radiation had much better overall survival than women who had only lumpectomy:

• 98.2% of the women who had lumpectomy plus radiation were alive
• 85.6% of the women who had lumpectomy alone were alive

Disease-specific survival also was better for the women who had lumpectomy followed by radiation:

• 99% of the women who had lumpectomy plus radiation were alive
• 94% of the women who had lumpectomy alone were alive

This means that 1% of the women who had lumpectomy plus radiation died of breast cancer and 6% of the women who had lumpectomy alone died of breast cancer.

Both of these survival differences were statistically significant, which means the difference was likely because of the radiation and not just due to chance.

"By quantifying the benefit associated with adjuvant radiation, this provides perspective and enables more statistical objectivity in the process outlined by NCCN [National Comprehensive Cancer Network] to evaluate and manage elderly patients," said Sean Szeja, M.D., of the University of Texas Medical Branch at Galveston, who was one of the study authors. "Prior to this study, there has not been any measurement of the reduction of breast cancer specific mortality from the addition of radiation to lumpectomy in this patient population."

The study did have some weaknesses. Although the researchers were able to control for many important variables, such as age and cancer grade, they couldn't control for two very important factors:

• whether the women had any other health problems
• the women's overall health

So it's likely that more intensive treatment plans, which would include chemotherapy and radiation, were recommended for healthier women. This means that some of the survival benefits of radiation could have happened because overall healthier women were in the treatment group that got radiation while radiation wasn't recommended for less healthy women.

Still, this study offers encouraging news for older women diagnosed with triple-negative breast cancer.

If you're 70 or older and have been diagnosed with triple-negative disease and are making treatment decisions, you might want to talk to your doctor about this study. Ask your doctor which treatments are recommended for you and why, as well as about the risks and benefits of each treatment.

Together, you can develop a treatment plan that makes the most sense for your unique situation.

grammakathy

Trill - these ladies are giving you such good information. I'd like to encourage you to take it one appointment at a time. Write down your questions for the doctor and ask for written copies of each report to review at home. You might also call the American Cancer Society who will have someone call and help you with questions to ask. Their volunteers are excellent and they might have someone in your area who could go to appointments with you.

My Mother was 80 years old in 1999 when she was diagnosed with breast cancer. She had a lumpectomy and then refused to have radiation or take any medicine. She passed away at the age of 86, but it wasn't from cancer but her heart. I was diagnosed at the age of 62, and chose my treatment differently - a double mastectomy. You will choose the right treatment for you, and should take it slowly because you will gather information along the way with each doctor and person you talk to. Then you will make the right decision for you. Hugs to you! You can do this!

Dauna

Hi Trill,

As many have already said, I'm sorry you find yourself here with us because it's a sisterhood to which no one wants to belong.

Let me first say, that you have a natural gift for writing. Irrespective of ultimately what choices you make I hope you'll document your personal journey. The clarity in expressing your thought process, despite your fear will benefit more women than you can possibly know. It has already been expressed that many of your fears have resonated with those here, reading and responding.

I remember the morning, with the tips of two fingers, I brushed the cotton sheet off my right breast and it felt like I had been catapulted into a parallel universe. Surely it couldn't be? There was no lump the previous day. Stop. Breathe. Think. Try again. I had to be horribly mistaken. I wasn't !

I did the exact opposite of what I always believed I would do if I found a breast lump. Despite having the most loving, kind and supportive husband (who lay beside me still sleeping) I decided to say and do nothing. In my fear, I had convinced myself that it, whatever 'it' was, would be gone by the next morning. Okay maybe the next, and the next until more than a week had passed before I accepted the fact that the lump was going nowhere. I told my husband, who after touching it once called our GP and had an appointment for the same day.

Tests were arranged; digital mammogram (I'd had 10+ years of clear ones), ultra sound and ultimately a biopsy to confirm the Radiologists DX as IDC.

I'm the antithesis of you in that by the time I saw the surgeon I was convinced I'd all but endangered my life because I didn't act the instant I discovered the lump. I was told then and many times afterward that days, or even many weeks would make no difference to my long term prognosis. Nevertheless, the only thing I wanted was to have the invader OUT! I was absolutely certain I wanted a mastectomy. I could no longer bear the thought of having this 'thing' living and growing inside me.

The surgeon was wonderful! He explained my surgical options, including no surgery if it's what I decided. By the time we were done, I'd opted for a lumpectomy. I still wanted it done yesterday, though. Yesterday turned out to be a week later. For me it was six weeks before I saw the Medical Oncologist (MO).

All of 35 yrs. old (younger than either of my grown children) her air of confidence without a shred of arrogance won both me and my husband over completely. Though the pathology looked fairly good, ER+, PR-, Her2- and I was scheduled to begin radiation the MO sent my tumour to California for the Oncotype Test. She wanted to be certain that I felt confident I was doing everything I needed to do to be able to not just assure myself but also to assure my husband, children and grandchildren. She fully expected the Oncotype Test to come back with a very low score.

We were both shocked and dismayed that it came back with a score of 30 which indicated that my tumour was not nearly as 'friendly' as she had thought it to be. And so, after consulting independently with each Onc., on in the Unit that day it was determined that the recommendation was for a titrated course of intense chemo for 4 rounds instead of 8 and then 5 weeks of radiation.

I've just had my 3rd chemo. Crummy is the word I would use to describe how I feel but I also have the co morbidity of having RSD/CRPS (a fairly rare, but excrutiatingly painful, debilitating and thought not fatal, incurable illness). I was very fearful of nausea, as you are. The drugs to combat it are amazing! When my tummy feels a tad off, I have an anti nausea that I can take at anytime after the first 4 days of regular anti nausea drugs wear off. It works in less than half an hour! I've never vomited once, though I have the same problems you have with anesthesia.

I'm treated at a Cancer Centre and have the very best of care available to me. If there's anything whatsoever with which I'm having difficulty I call the triage line and my Onc. Nurse or MO calls me back the same day, sometimes within several minutes. I would highly recommend that if you're close enough to a dedicated Cancer Unit you'd want to be referred there for treatment.

I tell you all of this to try to reassure you that at no point did I encounter anyone who wanted or suggested I needed to make an immediate decision. On the contrary, everyone to a person, wanted me to be sure I'd given the time and thought I needed to come to any decision. Again, everyone pointed out that each and every decision would be mine. My team would make recommendations based on test results, their experience and what each would chose for a loved one of his or hers. I would like to think your experience would be the same.

Just as a point of reference, I'm 65 and there was a time when I didn't think it was fair of anyone, my loving husband and family included, to want me to have to live the rest of my life with RSD/CRPS. It was a very lengthy road, 4 years to come to terms with it and to find the drugs that would address the pain. I know that when I look back on the 8 months that Cancer will have been the focus of my life it will seem like such a short time.

I wish you the strength and the peace of mind to look at all the test results, listen to all the recommendations and to ultimately make the decision that is best for you.

Please keep in touch and let all of us know how things are going for you.

Warm hugs

Dauna

proudtospin

We all have to confront decisions that we really likely would prefer not to make but as many have said, stay cool and you do not need to rush.

Since you referenced your sinus surgery, I can tell you that I had sinus surgery in 2013 and it creeped me out much more than my lumpies! In fact I told the ENT how nervous I was about the sinus thing. He looked surprised and repeated the details of what my sinus surgery would be like.

Also, not sure what your relationship is with your PCD but mine would be where I would turn for an opinion as well,. Dang but my PCD has known me for 25 years and I do love and trust her

best of luck, oh yeah, lumpies were way easier than that last sinus thing!

octogirl

I'd like to second the endorsement of emend. My MO gave it to me after each chemo and it really, really helped. Good stuff. Good to know it is a post surgery option too.

Octogirl

littleblueflowers

Trill, how old is Pantaloon? Cats are so wonderful!

Trill1943

HI--I have no phone or internet and am borrowing a friend's--will get back to you and also read this excellent report you've sent. My cancer--a friend has looked into my path report--is both invasive and aggressive..will see breast doc Tuesday..hope I have a phone and internet by then..cried my first tears today and it felt great...thanks so much..trill

Trill1943

She's four. A ball of fluff....found out today i have an invasive and aggressive type cancer...cried my first tears....didn't jump out the window...have no phone or internet at present and am borrowing friend's....see doc truesday...t

Trill1943

Hah-hah!  Thanks for the sinus story. It was weird.

Will dive into this cancer thing...as opposed to diving out the window...t

Trill1943

Dear fellow traveler, thanks for your kind and beautifully written message. 

Yesterday I lost my landline and with it my internet--I'm borrowing a friend's at the moment and really need to read over your letter at my apartment and take in its details.

I found out today that I have an aggressive and invasive cancer--a friend looked into my path report, which made no sense to me. Anyway, there it is.

I see the breast surgeon Tuesday, who's director of the Breast Center at Mercy hospital here in Baltimore. They say he's great.  And his nurse Barbara is reportedly excellent.  I know he's gonna say a bunch of things and once more my head will reel and I'll need my kitty Pantaloon to comfort me. So it goes.

I so appreciate your comments about my writing. I started a novel a decade ago and as it's pretty autobiographical, I keep going back to it and adding more details as I recall them.  It's now, what, three and a half thousand words...More?!

This whole experience is telling me I should FINISH THE DAMNED NOVEL!

I know I'll return--once I have the internet up and running--here and write about what's happening with me. hoping it will help others as you all have so generously helped me. God bless you.Thanks to all of you I did NOT do a header out my window!

Let us know how YOU are doing.

Bye for now! Trill