Dis Breast Cancer Survivors Part II -GAGWTA!

[lookingforward]

Dawn...I am so glad you feel confident with your oncologist! I was thought to be stage 1 as well and wound up stage 2! I had one sentinal node and on axillary (out of 24) positive..so two nodes! Mine were intermediate grade and low grade (I had two tumors) and very slow growing...they estimated that those tumors had been there for quite some time. It was hard for me to learn that chemo was in my future, but I made it though! Now, I am undergoing radiaiton by choice and quite depressed about it. I can't wait until October to get my new breast! YAHOOOOOOOOOOO! I am currently planning a great December disney visit...it keeps me happy.

Hang in about the hair...its hard at first but mine is already starting to grow back and its only been one month since my last chemo! My thoughts are with you!!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Dawn- I am so glad you are pleased with your onc at SK. I was also dxed at stage II with 2 positive lymph nodes. I did a clinical trial of A/C and Taxol for chemo, 4 each every 3 weeks. It sucked, believe me, but I got through it. I was dxed just after my 36th birthday. I did chemo in 1999!!! I AM STILL HERE!!!!!!!! I have been through a hell of a lot, with cancer and all it's fall out in my life...but I am still here. My daughters were only 2 & 4 yrs old when I was dxed...now they are 11&14. They have been my secret weapon...how I moved on, got over my fears and just moved through treatment on to healing. My motto was faith, family, positive attitude and a sense of humor. You can do this, I promise. I'm so glad you have the WDW trip to look forward to. You know we'd love to hear your planning. Maybe a trip report in progress here will help you through this time...

dbprimeaux- I'm glad your plan is in place. I hope that 6 weeks flies...

jackskellingtonsgirl- I hope they can schedule your mom in soon after the consult...One thing all this has taught me is extreme patience!

Well, I guess I have extended my trip as far as humanly possible! My oldest dd has 2 finals the day we leave, 6/10 (1/2 day, leaving right after school) then we leave WDW the night of the 19th since the kids have dress rehearsals for their dance recital the next day... our APs expire on the 20th. No plans for anything beyond this trip...who knows what's next...hmmm...

 

[Pea-n-Me]

I was Stage II, grade 3, one positive sentinel node, and triple negative as well. I'm also a longtime cardiac nurse whose taken care of heart failure patients for two decades, some of them related to chemotherapy; adriamycin in particular. I couldn't believe the cruel irony in that I would have to take this stuff myself. When I was signing the consent I cried and cried, feeling like I was signing my death warrant.

But I did take it, because my oncologist explained to me that in the past, people were kind of "blasted" with it, the thinking being that more was better. They've learned over time that more is not necessarily better; that heart damage can occur with larger doses. That's why today, they give the smallest amount possible to do what it's supposed to do, yet limit any damage to the heart. In 2004, I was given the statistic that I had less than a 1% chance of getting damage to my heart from the adriamycin. My own professional experiences have led me to worry, and hope they were right, but I put my faith in God and my team, and so far, so good. A nurse and social worker at my support center spent a lot of time with me teaching me to think about chemo as "a good thing" as opposed to a "bad" one. My only regret would be that I got cancer in the first place. In cardiac care I've also seen that there aren't nearly as many cases today as there were years ago related to adriamycin toxicity, thankfully.

I've told this story before, Dawn, but I'll tell it again. I was taking care of a Harvard oncologist one night and he told me his daughter had had breast cancer, but I hadn't yet told him that I had. I asked about her chemotherapy and he told me he didn't want his daughter to have cytoxan, so she didn't. When I asked him why, he answered "because it can cause lymphoma". Later on when I shared with him my story and told him I'd "had it all" (adria/cytox/taxol), he apologized. He was kind of talking "medical talk" with me, but didn't realize he was talking to a real person who'd had to grapple with these decisions too.

The way I think about it is that millions of people have had these agents and haven't had problems. And there are people who've had no chemo at all, yet end up with things like heart failure, and lymphoma. There are stories out there. Some are fact, some are fiction. Many are outdated and have become lore. Like people thinking that when you have chemo, you're spending all your days puking your guts out. True at one time, but not now. I think you have to educate yourself as best you can, and make decisions based on the current information that's out there, put trust in your doctors, and do what you can live with. You have to weigh the benefits and risks on both sides.

 

[lookingforward]

My oncologist recommended a "lighter" chemo of just the Taxotere and the Cytoxen (I hope I spelled those right) called TC and my second opinion recommended TAC with the adriamycin. I had a muga scan done and it indicated my heart was in good condition so I opted for the TAC. I often regretted it during treatment because it was a harder course to endure. I am not sure I did the right thing and thats the scary part of cancer treatment. SO MANY DECISIONS! Just get the best opinions you can and keep looking forward. Now, if I can stop crying every day at radiation I will be happy. Its gotten me in such a bad place...and I just don't know why!!

 

[DeeCeeSW]

Thanks to everyone for your support!

I am doing a little better today. I had some trouble sleeping last night, tho. I guess I have to look at it as 6 days. Just 6 days. I will do the countdown as well. What is really weighing on me is the fact that I will be having expander fills AND the chemotherapy at the same time. I already spoke with my PS about changing the fills to my "off weeks," when I am not receiving chemo. I just hope I have the strength to get to her office!

With the drugs to fight off nausea and vomiting and the Neulasta shots the day after treatments and the Advil for the pain from fills and the Tylenol for residual pain from surgery (which will hopefully be resolved by then), the possible steroids if I get tingling and/or numbness in my fingers and/or toes, it sounds like I will be a walking pharmacy!!!

I was Stage II, grade 3, two positive nodes, and triple negative as well.

I was actually Stage II, grade 3, two positive nodes, positive for estrogen and progesterone and negative for Her2nu. Is there a significant difference in treatment for that? I decided to ask about eliminating that Adriamycin after doing some research on it and from getting information on breastcancer.org. I am nervous about the Taxol, but what can I do?

 

[DeeCeeSW]

My oncologist recommended a "lighter" chemo of just the Taxotere and the Cytoxen (I hope I spelled those right) called TC and my second opinion recommended TAC with the adriamycin. I had a muga scan done and it indicated my heart was in good condition so I opted for the TAC. I often regretted it during treatment because it was a harder course to endure. I am not sure I did the right thing and thats the scary part of cancer treatment. SO MANY DECISIONS! Just get the best opinions you can and keep looking forward. Now, if I can stop crying every day at radiation I will be happy. Its gotten me in such a bad place...and I just don't know why!!

TC is what I will receive. I didn't realize that this is considered "lighter." My oncologist said he was perfectly comfortable with me not doing the TAC because of my concerns about my heart. He said that studies have shown TC to be just as effective as TAC, so I am willing to take the chance. Perhaps I will regret my decision like you say you regret yours, but I think you did (and still are) doing everything you can to help prevent your cancer from coming back or showing up elsewhere. I am opting NOT to do that---if anyone should have regrets out of the two of us, it should probably be me. Radiation was not offered and everyone says it is not needed due to the fact that my tumor was under 2cms. and I had 2 positive nodes. He said I would need radiation if I had 4 or more nodes. You do what you feel is best for YOU. No regrets!!! I hope the radiation gets easier for you. My thoughts are with you always...

 

[Pea-n-Me]

I was actually Stage II, grade 3, two positive nodes, positive for estrogen and progesterone and negative for Her2nu. Is there a significant difference in treatment for that?

There wasn't when I had treatment in 2004, but there may have been some changes in treatment protocols since then.

This was the way it worked then (they called it the "gold standard" at the time):

Invasive breast cancer with no nodal involvment = 4 doses of AC.

Invasive breast cancer with nodal involvement = 4 AC plus 4 Taxol.

Dose dense, if the person could tolerate it (this was fairly new then).

+/- radiation

Based on recent research, there were some things that were changing, but I can't remember exactly for which patients.

BTW, I edited my post above when I mistakenly wrote I had two nodes positive - I had one sentinel node positive. My tumor was 2.1cm and I had a lumpectomy with radiation. I think radiation is a whole other issue that's very individual also.

 

[Pea-n-Me]

PS, Dawn. The taxol, for me, was difficult, but in a different way than the AC. I did feel like crap during treatment, but have no residual effects from the taxol now.

The other thought is, I felt worse the week after chemo than the week of. I think this is true of many people. As far as having your expanders filled, you should probably ask your team based on what they see when they think the best time for you to have this done would be - the week of, or the week after.

With all that said, chemo is difficult, but do-able. You'll do ok, and we'll be here to support you 24/7.

 

[judithen]

Pea-n-Me, my treatment was in 2004, too. I remember the doctors at Northwestern talking about the Gold Standard. I had:

Invasive breast cancer with SKIN involvement = AC plus Taxotere pre-surgery.
NOT dose dense because of my age (58) and other "problems" (fibromyalgia and RA).
Radiation post-surgery = 35 treatments for 7 weeks at 5 days per week.

Supposedly even though I was Stage 2, Grade 3, Triple Negative, Skin Involved, the cancer had been growing for 4 to 5 YEARS. I kept asking about this because I found it unbelievable (and cause for more guilt as in "why didn't I find it sooner?"). So my doctors would give me lessons on cell division and how long it takes to go from one cell to 4.5 cm. I still find it unbelievable...but acceptable. However I reject the guilt. I can only say that mammograms are the only way to go and breast exams by self or doctor just aren't enough.

LookingForward and DeeCee, the AC was worse as far as my appetite was concerned. But only once did anything NOT stay down...and that was prior to an infusion...a sort of pre-infusion jitters. The Taxotere has been worse as far as neuropathy is concerned. My pinkie and ring fingers on the chemo arm are still pins and needles and slightly numb. And like Pea-n-Me, I felt worse (achy, exhausted) during the Taxotere than I did during the AC.

It probably didn't help that I am Cortisone sensitive (they say it's NOT an allergy but a sensitivity) and react badly to cortisone anything. So other than anti-nausea meds prior to infusion, I didn't take anything. Not even my usual anti-oxidents since I was told they could interfere with the efficacy of the infusions.

I had a Porta-Cath implanted but developed cellulitis from it almost immediately. Within a few days it had to be removed. Then I had a PIC Line for a short time. But my veins held up and we went back to using them directly. My advice for Porta-Cath surgery would be to make sure it is treated as SURGERY even if it is outpatient. I think one of the techs was negligent in use of a mask, gloves and gown when my Porta-Cath was implanted. Also a clear antiseptic solution was used to clean the field and not Betadyne, which is that nice bright orange color so you can know what's sterile. I think that's why I developed the infection. The Porta-Cath itself was cleared of being the cause. So...sterile is word and make sure your team knows it.

LookingForward, I can relate to the crying. Radiation tires you out more than you expect it to. I mean, you would think the chemo would be the breaker. But somehow the radiation just strips away your last nerves and is the last straw. Make sure you cream your radiation site and keep it healthy. It won't do much for the crying but it will help mitigate any additional problems. Still, even with daily creaming, I had redness, tenderness and some "weeping". I was told it was less than normal though. BTW congratulations on your new hair! That's a cause for celebrating!

As an aside, when my mother had lung cancer (a smoker for 60 years) in 1994, she refused chemo. She did a tour of the chemo room at her doctor's clinic and said "NO WAY". Nor did she want to go to any more doctors as I'd all ready taken her to a bunch. Refusing chemo did shorten her life but it was her choice and her wishes were respected. However my doctor's chemo room was entirely different. And though I was filled with trepidation from hearing horror stories (remember I had 58 years to get to this point), I wanted to live more than I was afraid.

Granted, chemo would not be something I'd want to do again. But that's because it would mean my cancer had returned. I found the whole experience to be less terrifying and less uncomfortable than I imagined it would be. The meds have changed, the doctors have changed, and most of all, the philosophy has changed. Cancer used to be thought a death sentence. Now it's more akin to a chronic disease. And we survivors can live with that.

I edited this when I had more time to keep on talking.

 

[MerryPoppins]

I am using MD Anderson Cancer Center in Houston, TX.

I've known several people who have gone there. In fact, one friend's young son had a kind of leukemea that was very rare. They'd only seen one case before and the person hadn't lived. This young man is now grown up and has graduated from med school. I think you'll find they're up on the latest and greatest.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Dawn- First I had 4 rounds of A/C at the same time, every 3 weeks then I had 4 rounds of Taxol. Each has it's own set of potential side effects and we're all like snowflakes so what happens to one of us doesn't happen to all. If there is anything specific you'd like to know ask away sista! I think those of us who did chemo would agree that not knowing exactly what is going to happen to you before you do your first round is hard!

I have a strong history of early fatal heart disease in my family, so Adriamycin was and still is a concern for me. I had a MUGA scan of my heart before chemo as a baseline, and so far so good, no heart issues. There is another version of the same type of chemo drug called Epirubicin (Ellence) that has less heart toxicity that you may want to discuss with them too. I never heard of it until chemo was over, it was used much more in Europe, and now I'm hearing more sistas are receiving it instead of Adriamycin here in the states.


After my bilateral masts. I met with a rad onc who went over my path. results. I had tons of cysts, but they didn't detect any more cancer. I could opt to have rads, but having left sided bc, part of my heart would be irradiated and the onc felt with my family history of heart disease this would be overkill. So no rads for me.


There are lots more options around now than when I did chemo. I have no regrets. I prayed and made the decisions based on what would leave me feeling like I had the best chance to come out of this a survivor, able to raise my little girls to adulthood...and enjoy old age with my hubby. I'm on my way... Keep making plans to be here, that helps me.

 

[laurabelle]

Dawn- After chemo was over, I did 5yrs of Tamoxifen then took a year off. I was still premenopausal, but my onc wanted me to be on an aromatase inhibitor. I considered having my ovaries removed early on, during chemo I had a lot of trouble with bleeding that would not stop and went on Lupron shots for 3 yrs. The year after I finished Tamoxifen, I started having some gyn issues and long story short I had both hysterectomy and oopherectomy and I'm on an aromatase inhibitor for 5yrs now.

Whew! That's enough for now!

 

[snappy]

I have had little time to post but am reading the thread.

I just wanted to say that I think it is such a gift to have this thread where someone facing chemo such as Dawn can come and find out how other have faced this and have managed it.

Thanks to all you wonderful laldies. This is the thread that keeps on giving.
I love to read your stories, even though I feel I have known some of you for such a while, it is a blessing to know you are here still for our new comers.

Thanks. Believe me I will be thinking of you all in WDW. I understand it is hot hot hot down there.

Just printed off my boarding passes. I guess we really are going!! DH is going to be able to go with us after all, although he will have to be available for questions that come up from the office. I hope to never become that indispensable.

 

[Pea-n-Me]

Supposedly even though I was Stage 2, Grade 3, Triple Negative, Skin Involved, the cancer had been growing for 4 to 5 YEARS. I kept asking about this because I found it unbelievable (and cause for more guilt as in "why didn't I find it sooner?"). So my doctors would give me lessons on cell division and how long it takes to go from one cell to 4.5 cm. I still find it unbelievable...but acceptable. However I reject the guilt. I can only say that mammograms are the only way to go and breast exams by self or doctor just aren't enough.

Aah, the guilt. I'm glad you're not holding onto it. I understand what you mean about the long time growing. I nearly when I first read in the Susan Love book which explained that when you find a tumor, it's been growing for a very long time. In the book it said 6-8 years, which of course put me smack in the middle of my infertility treatment, for which I'd taken hormone shots (resulting in the birth of my twins, and two other beautiful children to an adoptive couple [the second born just recently for those of you who are following the story]), so I did wonder if that could have been the cause. My doctors poo-poo'd that because my tumor was not hormone sensitive, but still, I wondered. (My doctor is famous for saying "stranger things have happened" but she didn't say it then.) I did have regular mamms, though, and had had one 11 months earlier which showed nothing unusual at all, lots of specialists went over it with a fine tooth comb. So I've tried to let it all go, too. It is what it is. And I wouldn't change anything if I could anyway.

Now, if I can stop crying every day at radiation I will be happy. Its gotten me in such a bad place...and I just don't know why!!

My guess would be a combination of reasons. First, the cumulative effect of treatment. I totally remember feeling that way, too. I think there was the expectation (mostly on my part) that as soon as radiation finished, I'd be able to go right back to life as it was, my old work schedule, etc. But I felt like I'd gotten run over by a bus, just completely wiped out. It was a couple of months after radiation that I actually started to feel better again. It's also kind of scary to come to the end of treatment. Apparently is is extremely common to be a little depressed after treatment ends. It's kind of like fight or flight - during treatment, you're adrenaline's up and you just keep going because you have to. But at some point, you have to slow down. So if you recognize it as going through a grieving process, it's a little easier, I think. I had such a strong emotional reaction to all of it, that I didn't have the classic signs at the end - more so throughout.

My cousin, who went through treatment at the same time I did, had her reaction a year later. That had been frustrating to me because during treatment I was an emotional mess, and she was acting like nothing was wrong. I was infuriated when she announced to me that her doctor told her she was going to live to be a grandmother as in, how come nobody's giving me those types of assurances and why isn't my mind in a place where I could believe something like that anyway? (Would never happen.) But later my heart went out to her whe she was having a rough time emotionally and I was well on my way to recovery. It's so individual. My advice would be to take the time to work it through. Let yourself feel it. It's difficult because nobody wants to feel that way. Find someone to talk to who can guide you in your feelings, ideally a professional. My aformentioned nurse and social worker were like godsends to me; I could let out my deepest fears with them when I couldn't with those closest to me - who just couldn't help me even though they tried. PM me any time if I can help at all.

This seems like a good place for the Under Toad article: http://annals.highwire.org/cgi/reprint/133/6/479.pdf

Have a good day, everyone.

 

[judithen]

Amen, Pea-n-me! Totally agree.

Laurabelle, me, too...hysterectomy and oopherectomy 9 months after the mastectomy. Pre-cancerous endometrial polyps / papillomas.

Snappy, say "Hi" to Goofy from me and my DH. We'll be visiting next month...just in time for the Fourth

 

[BeadyLady]

GAGWTA! don't mind me - still lurking around!

Work is busy now, brain is full, you all are very brave!

Stay Strong!

 

[NHAnn]

GAGWTA!!!

Memorial Day weekend greetings to all........

a quick hello as we prepare fro DD's college graduation
HOW did this creep up so quickly???
Tomorrow we head over to UNHfor her department grad and the Honors Convocation. We don't know if she is Magna or Summa Cum Laude yet, but either way she gets a cord tomorow to wear to the big University Commencement Saturday morning. At tomorrow's events they wear cap and gown and get their name called individually. Saturday's ceremony is huge...speakers and recognition of the separate colleges w/inthe University but no individual student recognitions (there are over 2K grads) Tomorrow night we are spending the night at a Sheraton in nearly Portsmouth (gotta love those Starwood REsort Points...thanks Swan/Dolphin ) We'll have dinner in Portsmouth tomorrow night after the Honors thing with 2 of DD's best friends thoughout middle, high shcool and college, and their parents. Amazing that these three young ladies have been close through thick and thin for so long and are graduating, with honors, together from college. Methinks there will be some "flooding" reported in NH this weekend


Then 2 weeks later DH and I are going to the happy place, and hook up with Avery and family for a few days during their Make A Wish trip!! DD can't come she made a commitment to house/pet sit.


Have been reading and trying to keep up, am always amazed and grateful for the wonderful support and friendship found here......

 

[piglet too]

GAGWTA!

Can chemo make you say things that you should really not say? My Mom expressed some thoughts of hers, that really hurt me today. We were on our way (and the second comment came as we were leaving) to her last chemo session. The comments were not directed toward me, but at my nephew who just got home from boot camp.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

My mom had her OB/GYN appointment yesterday. They did a biopsy on one of the uterine "fibroids", results in 5-7 days. They told her even if it comes back benign the oncologist could still want her to have a hysterectomy. I know her recovery would be brutal, but it's probably better to have it all in one procedure if she can. I think if her uterus is prone to abnormal growths (even if they are benign) she should probably have the hysterectomy and be done with it.

Breast ultrasound on Tuesday, surgical consult on June 2.

It's a shame I hate to wait, because if I LIKED to wait I would be in hog heaven!

NHAnn- Congrats to your DD! I hope you have a wonderful trip, too!

Piglet too - I'm sorry. I have no idea about the chemo, but I know it is hard to have a mom with cancer!

 

[MerryPoppins]

I have no idea, Kirsten. I never had chemo, so I'm not much help. I do think the whole cancer thing made me feel more likely to speak my mind about things. I felt (especially in those early days) like if I might not be around long, I should be able to say what I felt like saying. Maybe it's depression that does that to you? I'm sorry if she said something hurtful.

Waiting is the pits. That's all there is to it. Been there, done that.

I've been wondering something lately...and I'm not wanting to pressure anyone. I'm active on another thread, where we all know each other very well. We've all shared email and placed them on a private site. Would any of you be interested in doing something like that? I'd never want to post them here for everyone to see, if you know what I mean. Or even just share them and put them in your contact list on the computer. Anyone interested could email one designated person who then emailed the list out to everyone else. I know there are times when someone is in the hospital or has an emergency...it might be nice to be able to send out the word. I check my email more often than I check the thread. The other reason is that people occassionally disappear from the DIS. Mind you, I'm not intending to disappear, but it'd be nice if it ever happened to one of us, if we could still make contact. I wouldn't know how to reach most of you. Let me know what you think. I won't care if nobody is interested. And feel free to share if you have a better idea.