TRIPLE POSITIVE GROUP
Comments
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You all have stated so eloquently what I feel as well.
And my aunt lived 4 1/2 years longer than her prognosis...so she'd say..."Where would I be right now if I went out and spent all my money that first six months!"
I was placed on earth to be a mother and wife FIRST. I intend to do those things until I draw my last breath. My bucket list is fighting to live as long as I can to finish those jobs well! lol
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can you guys talk me down.....
i had a 3D ultrasound done about a month ago, privately, because my oncs said that since i just finished treatment and was going ahead with the bmx it was not necessary. I went ahead and did it because until these boobies come off i feel like a ticking time bomb (i know i am crazy but cancer makes the best of us crazy).
so the results of the ultrasound said - nothing on the left (good breast) but the tech saw a 2.3cm ill-defined mass on right (bad boobie) comments were that is it probably post surgical changes from the lumpectomy
i sent the report to my onc and they are doing a follow-up mammo and ultrasound at the hospital (which i am waiting for - once you are done treatment you are so down the list it is not even funny)
anyway - it COULD NOT be another tumor??????? already????? i had a complete response to chemo so this could not be ????
these breasts cannot be off soon enough
some words of encouragement PLEASE
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Highly unlikely but if it were to be another tumor they would find it in the path report. I mean a complete response to chemo and now a 2.3cm tumor?! I'm not an expert but thing about it. That's bigger than your old tumor. I also assume you are still doing Herceptin. I'm betting on the post surgical changes from the lump. Remember you had rads too!
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Rozem: possible scar tissue? Dense breast tissue? Hx of fibroids? Is it in same area? Seems too soon to have something that size especially while continuing herceptin. Be persistent and keep calling onc.
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rozem - I'm betting on post-surgical changes from the lumpectomy, too - they are very common after surgery! And as Lago said, you are on Herceptin, which gives you so much added protection. I really think you are making yourself sick with worry. Radiologists use the word "probably" and things like "clinical correlation advised" to cover themselves - so keep that in mind!0
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thanks ladies
my onc said he was not concerned, he said that they have to follow radiologist recommendations for further screening but he really believes it is post surgical changes -
i feel so utterly unreasonable at times i swear
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Hi Rozem
I had a mammogram in March, a couple of months before I completed Herceptin. I remember my onco saying there was some post surgical scarring following my lump. Think this is very common.Try not to panic but at the same time push for answers if you cant settle.
Liz
Tonlee, that TV series sounds dreadful. Unfortunately it seems the norm now. Nothing is sacred in the media. yes lots of people do weird and wacky things following a cancer dx, but most just crave normality. Having finished tx my big highs have been the SMALL things: going for my first haircut with my 9 year old daughter etc.... I posted recently that I would like to move to the seaside and work in a cafe!!! These are dreams/aspirations but the Big C appears to have taken it to an entirely surreal level. Normality, kids, family, just chilling and feeling at peace is all any of us really want. My opinion anyway.
Liz
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Hi all!
For the work thread, I have been off since 2/11. I am an RN-mat/child, nicu,peds- and could not be around all the bugs that go with that. I was given clearance by my PCP to return to work for a few hours in Feb of this year and my hospital said they could not accommodate an shortened shift schedule, so I was let go. I think they are hurting financially and I was convientent. So I have been on disability for the the last 15mo. and am on SSDI for who knows how long. When I told my MO that I had been let go, she said it was probably for the better anyway. For whom? I can't seem to get back to 'normal' because of it. She said getting back to work would be a good long term goal. yeah........
Rozem- I was also told that lumpectomies cause 'a scarring' that is picked up by mammograms. I was told that I would be starting MRI's in August because of the changes and that I have dense breast tissue and very small breasts. I was also told that the mammo and the ultrasound showed an enlarged lymph node. If it is still there in Aug. I'm in for another round of biopsy. But I plan on enjoying the summer. I have been told that they want a mammo/ultrasound/MRI on the L side every six months, and both once a year. Is this a standard? I was thinking it was once a year! Forgot to clarify that.
Aaahhh, the ocean sounds nice about now.......
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tonlee - I have not seen the show The Big C because it is on Showtime, and I don't have that channel. I am glad you described it, I won't bother getting it on Netflix either. It is important to remember that it is a show created for "entertainment" and shown on a premium channel not accessed by all the viewing audience. It is probably not a realistic representation of what the majority of people would do, at least let's hope so!!! I know both my dad and brother who were dx'ed stage IV at the get-go only wanted to have more time to spend with those they loved - not do outlandish things. My brother wanted to go fishing in the mountains, my dad just wanted to be with my mom, and my mom - not a cancer patient - but dx'ed with a degenerative neuro-muscular disease and unable to walk or stand - only wanted to see the ocean one last time.
I do get bothered with people who feel entitled to go off on people, or act like a fool, because they have been dx'ed with cancer, there is a recent thread devoted to just that, and I guess I just don't understand that - to me it is not an excuse to act like a jackass. We all need to avocate for our medical care - and sometimes that means we get assertive - but just going around like a loose cannon in all the other parts of one's life is not acceptable, at least to me. I would think being peaceful, healthy, and happy would be what we all want, IDK - maybe I am just boring!
rozem - heads up on the Sex and the City - remember that there are episodes where Samantha is dx'ed with breast cancer - they are sad/funny but you will be reminded of a lot of what you have just experienced, such as chemo, head-shaving, wigs, hot flashes, etc.
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SK,
I watched it on a netflix video. I don't get showtime either.
I have a friend from college (actually several) making a series called "Alice and the Monster." I can't wait to see how they handle it. (for all you general hospital fans, Luke, Tony Geary is in it
The Big C was a big fat FAIL in my opinion.Here's a trailer to David's new series. http://www.youtube.com/watch?v=9Iz5Q15sVh0
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SpecialK YES! I just watched those episodes the other day (this is what i do instead of earning a livin' these days) I remember when the series was on seeing those episodes, but boy does it resonate now. Especially the episode where she is speaking at a BC event and she is dripping sweat and flings off her wig. Oh we can all relate to that!!!
i got my metformin/placebo today...i joked with the study nurse that the must have given me the enitre five years worth because the pill "bottle" is the size of a coffee tin
i asked again today about the follow-up mammo and ultrasound, we shall see if they get me in anytime soon. As part of the study i had to have a physical. I mentioned to the onc about the finding and she pokes my boob and says "scar tissue" Really? you can tell just by touching it? you are good!
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tonlee - just watched the trailer - looks interesting! Cool that you know the creators. I am always amazed when my friends from college do grown-up stuff. One of my old roommates is now a professor (PhD) at our school - so bizarre! I feel like it has only been about 5 minutes since I was a college student - we can't possibly now be old enough to be responsible, contributing members of society, can we? I am saying this as the parent of two current college students, lol!
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Hi all,
I still don't really "feel" anything about having finished chemo last week. Today was supposed to be the last day but because I have pneumonitis I will only have done 11 of the 12 Taxol doses, just like I only did 2 of the 3 cyclophosphamide doses with FEC due to liver funtion problems (I officially did 2 x FEC and 1 x FE).
This week I have felt unwell from both the pneumonitis and the "usual" Taxol/Herceptin SEs and my hubby had his endoscopy and although we now know what his problem is (repairable hiatus hernia) he doesn't feel well and so there has been no celebration for my end of chemo...
I'm not sure when or even if we will celebrate since next Tuesday brings my rads planning session and today brings my first Herceptin only infusion.
With not being able to properly finish either the FEC or the Taxol it just doesn't FEEL over for me and I'm scared that even though it was only a small amount of each drug that I missed I will always feel like I didn't do enough... Was anybody else in the same position?
Jenn0 -
Jenn I was so excited to finish chemo 2 weeks before my 50th birthday. We went out but to be honest I sill felt like crap. Still bloated, stiff, watery eyes, nail issues… and probably a bunch more stuff I don't even remember. I didn't even enjoy dinner. I recommend thinking about celebrating about 5 weeks PFC. I swear I woke up that day and just felt so much better.0
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jenn i had FECD like you did - but neoadjuvantally. After the 2nd treatment of fec you could no longer feel the tumor (maybe didn't need the 3rd?) I had to have my 2nd and 3rd dose of taxotere reduced by 15% because i had such bad side effects (i could barely walk). I still had a complete response at surgery. My onc said they give the most they can but they can safely (not comprimise the effect) reduce the dosages. I'm no doctor but sounds to me like you had enough drugs -
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Jen, I am on TCH, but they had to reduce my dose because of SEs. I specificaly asked if that would compromise my tx, mo said that dosages are a best guess anyway, that there are many ways to calculate the dose and no one knows if one is better than another. Much love
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I agree with rozem and moonflower - the dosing is based upon clinical trials - it is a guideline for sure - but they haven't tested less, so really - no one knows if a little less may be just as good. My dose for my 3rd round (and probably the next one) had to be reduced by 15% b/c of the severity of my symptoms, too. I've read studies that say that dosing really is still not black and white - and as moonflower says - no one knows really what is ideal. All I know is for those of us who have had to have the dose reduced, it is not like we didn't give it our best effort - the toxicities were too much for our bodies. We have done all that we could. Don't look back - you aren't going that way. (P.S. That's not my quote - can't remember the author) 0
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My onc said they base the dosage on skin surface (that's why they take your weight and height). This doesn't sound like an "exact" measurement. I know my onc was ready to reduce my dose too if my neuropathy got serious. Still not sure if my heel will ever fully recover. I'm lucky it's only some numbness and not all the time.
BTW I am finally going to the super special dermatologist regarding my nails. I fear she will tell me that there isn't much she can do. I'm 16 months PFC. It's not looking good IMO. I got in on a cancellation so I'll be there first thing in the AM.
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Good luck tomorrow Lago. I sure do hope there is something that can be done to help your nails.0
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SpecialK: Great response about going off on people Sad but it does happen.
I had an appointment with my onco today who was suggesting we try 4 more Herceptin treatments to get me to 14. My husband was not a fan since my last drop in EF was 10 points. It is back up to 55 but onco wanted to try 4 more...she wasn't pushing but thought it might be a good idea. We thought about it a lot over the last 2 weeks and I met with her today and she agreed that I should be done with it...shouldn't chance at 55 (given my history) of a 10 point drop. She also said that they are still doing studies to determine exactly what is the right amount of Herceptin treatments....studying 3, 6, 9, 12, 24 months because they just aren't positive.
Now, I always thought that if you had breast cancer that the other breast was at high risk of it moving from the affected to the other. She said this isn't true........says typically if it comes back, it hits the liver, bones lungs.
I also asked about how I know the Arimidex is working and she said if it doesn't come back, it is working. So, I'll continue having my every 6 months mammo and ultrasounds for some time and seeing her every 3 months for blood work...not sure how long that will continue.
TIME TO GET DEPORTED!!!!!Scary after all this time! Wow, June 6th will a year since I finished chemo!
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Lago: Keep us posted on the nails. Mine are still a wreck and I used to have rock hard nails. Onco says it is still the Taxotere. How are your toe nails? I don't seem to be having an problem with the toes...fingernails growing like crazy and then peel!
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So many of us left with additional "gifts" from the treatments :-(
I have just gotten back from the optometrist. My eyesight has been getting worse (very short sighted already) quickly and I knew I needed to get it checked. I've had glasses since I was 10yrs old (now just 47yrs) and this is the first time ever that I was anxious about going.
Sure enough, my script has changed significantly. BUT I also now officially have CATARACTS in both eyes. Another SE from the chemo and steroids that is PERMANENT and will only get worse until everything is cloudy. At some stage I will need surgery to replace my lenses or I will go blind. As it is the optometrist said that my husband should probably do the majority of night driving from now on.
My mother is 84yrs old. I am now officially older than her I think :-(
Good news - no brain or eye mets (yay) and my optometrist tried to convince me that cataracts are good news because once I've had the surgery I won't be short sighted anymore. She was kindly clutching at straws to find something good in this mess.
Jenn0 -
(((Hugs Jenn))))0
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Sorry to hear all this Jenn. The side effects for many of us are so far reaching. I have macrodegeneration which I didn't have just before being diagnosed...I swear it is from the treatments but no one has ever heard of it. Many of us weren't able to finish Herceptin so we know how you feel. We all just have to pray that the treatments we got will be enough to protect us. Good luck and hugs to you!
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Jenn,
A family member had cataract surgery. She delayed it, canceled the surgery twice before finally doing it because she was afraid. Now she says it was much scarier to think about than actually have done. And she sings praises about being able to see again. Said she didn't realize how bad her eyes were until she could see....
Stinks it has happened to you. At least you know there is a fix for it, albeit an unfun and scary one.
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As far as work....I worked all through chemo, taking maybe 2 days off for feeling bad. It's been hard and some days I wish I could just quit work, but it does get me out of the house and moving and motivated.
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wow, Jenn, didn't know that is a side effect of all these nasty drugs in our system. I know these drugs save lives but when i think about how toxic this stuff is ( i barely took any OTC meds before) it just scares me- not only do you have to worry about the damn cancer but all the toxicity of treatment too
my MO said she is going to apply to get approval for genetic testing for me (here you have to have gov't approval because thats who pays the bills) she said i will probably get approved based on age of diagnosis alone (42) even though i do not have a strong fam history of breast or ovarian but I do have family members with other cancers
Question: i remember reading on one of these discussion topics that most Her2 patients are not brac1-2 and that these are more related to her2- diagnosis. I know someone personally who is her2 and always knew she was brac2, interestingly enough she is er/pr -
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lago - How did the appt go?0
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Alrene my nails never peeled. My toe nails are a mess. One of big nails beds never flattened out completely so that nail is a little lifted. Since they lifted the evil fungus got in there. My podiatrist says that even if I take meds to get rid of it, it will come back because the nail is lifted.
Omaz, just got back. The dermatologist took a culture of my fingernail beds. If it's yeast she can help me. If not then she can't. She said she had another patient that didn't have yeast. I'm preparing myself for that. She also said the ridges are from age/menopause. I think I'll blame it on the ESD (estrogen sucking drug).
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Lago, I know you have to prepare yourself for the worst. I'm still crossing my fingers for you.0
