Calling all TNs

Anonymous

Annie, thanks for asking this question.  I'm facing it also.  I'm 59 and my BRCA test was negative.  I'm doing neoadjuvant therapy but my tumor was removed in the excisional biopsy. 

There are so many great responses!  I'll be reading them all many times.

Phyllis

Titan

Good thing you B**t**ch**ed Bak..sometimes you just have to do that...go over a few people's heads.

the lx vs masectomy...you've got to do what is right for YOU..good thing you are checking things out...I LOVED the fact that I had surgery on Friday..virtually no recovery time..back to work on Monday..no big deal..I felt so much better after that part was over...remove the evil and get on with it..in my case and most others..chemo/rads...

HOWEVER...and a big HOWEVER..if I have any inkling of anything going on now..the girls are coming off...no question.

Paintingmywaythru

I think this is such a difficult decision. I didn't have time to think and went with a lumpectomy and am fine with this. My tumor was small and yes, we all risk a reoccurrence but the odds are in our favor that we will be fine.

the mushroom info is very interesting. Thanks for sharing.

My sister took me to Hawaii to celebrate my geting past chemo and radiation. Just came back.  It was wonderful and a great escape.

Beginning to get enough hair to go without my wig except at work for now.

OBXK

Bak - damn and blast !!!! I am so sorry to hear of your latest setback.

Painting- what a wonderful sister. I'm glad you could escape.

minxie

I read a study recently about how under-informed most breast cancer patients are early on - about their options, about their prognosis, everything. Apparently the surgeons and oncs are not telling us enough - probably trying to protect us from rampaging anxiety. But the problem is we don't have the information we need to make informed choices.

And the big one is lumpectomy vs mastectomy. In my case the surgeon said, small lump, no sign of nodes, do a lumpectomy. Me, knowing nothing else, said sure. This was after the mammo showed my lump, as well as some calcifications, which they told me were nothing to worry about. Well lo and behold, after I turn out to be TN, did lumpectomy, SNB, axillary dissection, 5 months chemo, and started my first week of rads, my 6 month follow up mammo showed those calcs had changed and now were BIRADS 4. And after another horrid biopsy, were found to be DCIS.

At that point I got the BMX I should have gotten first time around, if I had been given all the facts and had the ramifications properly discussed with me. I have also heard that BMX does have slightly less chance of recurrence than lumpectomy/rads.

Bottom line - it's so overwhelming when you're first diagnosed, but do try and get all the info you need to make an informed decision about your treatment. Don't rush into anything out ofignorance or fear.

oh, here's the article;

http://health.usnews.com/health-news/family-health/cancer/articles/2012/01/20/many-breast-cancer-patients-uninformed-about-options-study
 

minxie

Also, ushrooms - AHCC and Peak Immune, they both have mushroom mycelium which is a cancer fighter.

bak94

I had a lumpectomy with my first cancer in 2002, and it was the right decision for me then. I did not have the brca test until this time around and found out I am positive, so had bmx this time. Lumpectomy was much easier, emotionally and physically for me. I couldn't do immediate reconstruction after bmx, not for at least a year. Now if I had a more informed doctor that had done the brca test on me the first time around or if I had been more proactive I would have probably done the bmx the first time and possibly saved me from this later stage cancer that was missed even though I was being watched closely. But if I was not brca positive and had regular risks, I think I would do lumpectomy, bmx has really messed with my self confidence and my range of motion and just feels tight and uncomfortable, of course I am only 2 months out from surgery. I guess we can only do what we feel is right at that time.

bak94

I had a lumpectomy with my first cancer in 2002, and it was the right decision for me then. I did not have the brca test until this time around and found out I am positive, so had bmx this time. Lumpectomy was much easier, emotionally and physically for me. I couldn't do immediate reconstruction after bmx, not for at least a year. Now if I had a more informed doctor that had done the brca test on me the first time around or if I had been more proactive I would have probably done the bmx the first time and possibly saved me from this later stage cancer that was missed even though I was being watched closely. But if I was not brca positive and had regular risks, I think I would do lumpectomy, bmx has really messed with my self confidence and my range of motion and just feels tight and uncomfortable, of course I am only 2 months out from surgery. I guess we can only do what we feel is right at that time.

annie3310

Thanks for the input, everyone. I have time to mull over the lumpectomy v. Mastectomy decision since I'll be in chemo for the next four months. Let's face it, all of this is confusing as hell - especially when the diagnosis is new. Another advantage of neoadjuvant chemo, I suppose.



Okay. Off for my first A/C treatment tomorrow. Wish me luck!

bak94

Good luck Annie!

I am freaking out right now! I should stay off of Dr. Google, but reading up on this infection I have is scary! Some sites say it has a 50% mortality rate! Anybody else ever heard of pseudomonas aeruginosa? I guess it is a big problem in hospitals and with cathaters, my infection is right where my port was! Now I am thinking I got it when I was in the hospital, as that darn incision from where they took the port out is not healing. I ahve been to my surgeon (well, his co worker as mine has been out) twice a week to have fluid drained and they didn't notice this should be healing faster? He had mentioned he might have to scrape out the bad scabbing and reclose at some point well why not sooner than later? I had no idea this was so serious until I looked on google. I am going to post this somewhere else also to see if anybody has heard of this.

sylviaexmouthuk

Hello bak94

I am sorry to read you are having so much trouble.

To help you I have posted a lot of information about pseudonomas aeruginosa on my thread. This is not taken from the internet.

Wishing you well.

Best wishes

Sylvia

ksmatthews

bak94 so sorry you are having so much trouble with your port incision.  I have a question though, how do you know it is infected?  Mine is still red, and sometimes when I move my arm a certain way it hurts.  I went to my MO yesterday and she looked at it and didn't say anything.  So Idk?

Lumpectomy vs Masectomy I did leave it up to my BS to do what he felt was best.  I told him when I was going into surgery to do what he had to do.  So when I woke up I said do I still have my boob!  I had complete response to the chemo so he just needed a sample to send for path.

I agree though each individual has to do what is right for them! 

TifJ

Damn Bak!! I have never heard of that particular bacteria. My port infection took about 17 days to really be gone. My port itself was never infected- it was in the catheter up by my neck. What antibiotics are you currently receiving? I am so sorry this is happening- why does there have to be complications- haven't you been through enough!

tracie23

Has anyone had chronic mouth ulcers/cankers since finishing your chemo? I don't think I have gone a day without 2 to 3 on my tounge or in my throat?????

mccrimmon324

Bak, I'm so sorry your going thru this!! 

Summer38

Oh Bak - I'm so sorry you are dealing with this! Hoping for a quick recovery - stay on the Dr's butt, squeaky wheel gets the grease

Wrenwood47

Tracie- Chk with your Dr and see if it is okay for you to take L Lysine. It should help with the canker sores and you can get it at any drug or vitamin store. Hope this helps.

CatWhispurrer

I finally got my first chemo on Monday.  After the lung collapse during port placement, I was worried about the port working but it worked great and am glad I got it.   I'm feeling funny, shaky, quesy and my face and scalp feel numb.   All in all, it isn't as bad as I thought.  I am taking Claritin to stave off bone pain from the Neulasta shot yesterday, rinsing my mouth with Biotene and taking nausea meds.

Bak - so sorry about the infection.   My only experience with pseudomonas was I had an elderly cat that got pseudomonas in his sinuses and I fought it for many years until he passed of intestinal cancer.  Cats have very small sinuses where the bacteria is hard to treat so I had to nebulize him twice a day with antibiotics but never really got rid of it.  That makes me think that the bacteria is probably still around my house (I lost him in 2008) and I better be very careful.  As for your infection, I think the right antibiotics should take care of it but it might take awhile. If I remember right when I researched it was that Gentamicin is a good antibiotic - what are you taking?    Stay on top of it with your docs and keep us posted!   Take care.

khs113

Hi All, A friend just forwarded an interesting article about a cancer vaccine. Has anyone heard about this? Looks promising.

http://www.wgrz.com  Search Roswell Park Makes Cancer Vaccine

marial

I was given the option of lumoectomy chemo and rads or mastectomy and chemo..I chose mastectomy for my own piece of mind..I was told the stats were the same, but I felt it was the right decision for me..to be honest, I lost all attachment to the breast once cancer was found..I hated it..have since had a prof on other side as well

Hope60

Marial - your post struck a chord with me, even though I had a lumpectomy. I sorta  think of my affected breast as "the alien."  It looks more or less the same as it did before....but I don't think of it as a breast in the way I used to....like I don't "own" it anymore.   Now it's a source of worry, with docs poking and prodding it all the time.  But I'm still glad I had the lumpectomy.....which makes no sense, I know.   

annie3310

I had my first chemo today. We just got home an hour ago, and so far, so good. I'm at a university hospital (Northwestern Memorial in Chicago) and I'm amazed at their operation. Everyone seems super on top of things. While I was laying on the bed in my private room (who knew?), I was visited by an acupuncturist, a nurse practioner, a dietician, and lastly, a "patient navigator." My partner was particularly happy about the navigator - she seems like the go to person when we're not sure where to go to.

I feel a little "off" but I wouldn't call it bad. Hopefully, tomorrow will be as mild. And I hope the same for all of you.

 Annie 

Titan

Hey Annie..glad your first chemo went well..I remember feeling ok..but a little "off" as well...may your se's be few!  Remember to call your onc if you feel anything more than a little "off"..that is what they are there for..I'm sure they gave you a number to call...my onc told me that it is their job to be sure that we get through this with as little se's as possible...use them..we don't have to be strong and just put up with it..we just have to get through it...and you will..

Had my 3 month check today...my breasts are as lumpy and bumpy as always..will they every be freaking normal?  besides that everything ok...my onc did say no to metformin..which didn't surprise me...he said that he is not counting it out..just wants to wait until more studies are done..ok..whatever...I was whining..but ...we tn's cant take anything..it sure would be nice for us to have something!!   didn't work...oh well..I'll ask my BS when I see him...lol.

bak94

ks-Ihave been going to the bs twice a week to have a seroma drained. The doc does an ultrasound and happened to scan the area of my port and noticed a pocket of fluid near where the port was. He drained the fluid and it looked yucky so he sent it in for a culture, this is how he found the infection. When I was in the hospital when my port was still in they took blood straight from the port and that was not infected, they did this before they flushed it. I am on levofloxin, I think that is it plus flagyl again to prevent c-diff.

My mo called me today telling me I needed to get better so I can start rads, that he didn't want all his work with the chemo to be for nothing! I know he is concerned that I have not started rads but now that has freaked me out! He is kinda funny, he told me he thought that the recepionist at my infectious disease docs office was not nice, but he liked the doctor!

Catwhuspurr-yes, animals can carry it. I have 2 dogs and it could be very well the source of my infection, although it is common in hospitals as well. My chihuahua sleeps under the covers with me, although he was banned from the bedroom for a few weeks after my bmx.

riley702

I'm a respiratory therapist and see Pseuomonas all the time, usually with respiratory patients like those with cystic fibrosis or sometimes those with long-term trach tubes. I've gotten to the point where I recognize the smell (sorry if that was too graphic). We keep patients with Pseudomonas in contact isolation (gown & gloves) when they're in the hospital, but in their day to day lives, they don't. They just take normal precautions. I've never heard the assertion of a mortality rate up to 50%.

bak94

Oh I hope I don't smell funny! I can't smell it!

mccrimmon324

Annie, Glad you got your first Chemo done and aren't feeling too bad.  Keep yourself hydrated! 

I can't believe tomorrow will be 4 months PFC for me.  I swear it was just last week I was starting treatment and thought it would never end, I'd never have hair again.  Trying my best to get back to normal, but have to find a new "normal". 

Bak- Your funny, I'm sure you don't smell. 

Has anyone heard from Suze?  I hope she's resting up for her cruise. 

Hope60

Annie - I'm glad your first chemo went well, and you feel OK.  It sounds like you're in good hands at Northwestern.  May your side effects, if any, be mild!  And if not, don't hesitate to call your onc....there's a lot they can do to alleviate them. 

annie3310

It's the morning after my first chemo treatment, and I'm just back from getting my neulasta shot. I'm definitely feeling different than I did yesterday, just more "off", if that's a reasonable way to put it. low energy and a little wobbly. Very glad to have no appointments today, but not in misery. Rather than halving a traditional full time job, I'm a real estate agent. Sometimes busy, sometimes not. It's harder to plan that way, but easier in terms of dealing with employers. I would not want to be working in an office all day today, that's for sure.

 Waiting to see if I get any Neulasta pain. What are people's experience with that? 

christina1961

Annie,

Some people take Claritin to prevent Neulasta pain-  I'm sure someone will let you know their experiences with the Claritin.  I never tried it but I did get bone aches, even in my jaws, with Neulasta - I took oxycodone for a few days to help with it.

Wishing you the best for no side effects!!,

Christina