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Has anyone had stage 3 Breast cancer, I am stage 3, I need advice....

tinaMarie33
Posts: 1
Joined: Aug 2013

 

Hi,

I have just finished my chemo, except herceptin, and my next step is Bilateral mastectomy,  I will have the reconstruction at the same time of surgery.  6 weeks after surgery I have to start radition and have radiation for 6 weeks.  I did fine with the chemo, thank-god!!  Personally the biggest part of my nightmare is the surgery, and radiation.  Iam kinda feeling afraid, anybody out there who has been thru this, any advice, or anything that may help?  Please reply, honestly I am mostly afraid of the surgery. The doctors tell me after surgery they have to expand my expanders faster than usual because they have to be expanded all the way for me to have radiation.  I am worried about the outcome of the reconsturction after radiation too.

Thanks for reading......

 

littleangel65
Posts: 46
Joined: Jan 2013

Hello,

Well I am in remission with stage 3 breast cancer, but, my story is different.  I had my right breast taken off on March 15, 2012 but with that, t..hey had discovered a large tumor in my uterus, so, they had taken that out also at the same time.

As far my my recovery goes, the breast part didn't bother me too much, not as much as my gut area, I had dressings that my husband had to change for me at least 2x a day, and walking took awhile to just go a few steps.  But as far as the breast thing, nothing really bad.  Being they took out 19 lymph nodes on my right side (4 showed cancer cells), my under arm area, and arm pit area was numb for like 6 or 8 months, before I started to regain feeling again, but that is normal.  although I have some feeling back, the normal feeling will not return.

Then after I healed from my surgery, they started me on the herceptin as soon as possible, so my treatment for that began in mid-late April of 2012, then 3 weeks after my 1st treatment of herceptin, my doctor had me do the herceptin and my 4 rounds of chemo.

Then in late July of 2012, I had to undergo 33 rounds of raditation, which they took me off of the herceptin temporialy while I was doing the radiation.

Then they told me that I would have to wait 6-12 months after my last raditation treatment, which was Sept. 20, 2012.

I just had my last herceptin treatment on June 28, 2013.  Now I am excited about getting the reconstruction done, but... I have to lose 30 pounds (which is what I gained during my treatments and meds), and then my surgeon said we should be able to begin the procedure.

For me, the radiation did make me tired, but, the key thing, is to get some kind of excercise everyday, I would get up really early, before the heat would get bad, and walk about 1 to 1.5 miles at least 5-6 times a week, and I still do, except for the rain we've been having in the central United States lately. lol

Just hang in there, eat right, and excercise, the meds more than likely will make you gain some weight, but, this is why you want to exercise now, so that when you do finish all of these challenges, your body will be already be adjusted to it, and the weight will come off faster for you.

They will gradually give you exercises to do, to help you after your surgery, and they will help alot.  I am happy for you, that you are able to get your reconstruction now before the radiation, that is great!!!!

I don't know if I will ever get my reconstruction, I applied for disabilty last summer, and I am just now going for my hearing, I just spoke with my advocate, and he informed me that I will probably get back pay for the last 18 months I was out of work, but that I will have to return to work, and that means, that I will have to wait another year, before I can apply for more FMLA, and thats if my employer doesn't try to find some kind of reason to get rid of me before than.  I know they can't fire me because of my illness, but, they certainly can find some other reason if they wanted to.

I wish I could help you with some of your other questions, but my surgery was 7 hours long, and honestly, I felt like I was under for only 10 minutes, and like I said, the breast part of seemed to heal pretty quickly, I think by 4 weeks, I was able to start doing normal things, but of course not over do it, you don't want to pick things up over 5 or 10 pounds for awhile anyway.  Hang in there, sounds like you are doing great, I think the chemo scared me more than the surgery, but like you, I did well with the chemo.

Just think of what you will look like afterwards, it will all be worth it!!!!  I will pray that you continue to keep doing well.  Good Luck!!!!!

TinaMarie3
Posts: 2
Joined: Mar 2013

Thanks for the advice, Im tinamarie33 too,,,

sounds like your are doing well with all you have been thru too,,, hope you get your surgery soon Laughing

TinaMarie3
Posts: 2
Joined: Mar 2013

Thanks for the advice, Im tinamarie33 too,,,

sounds like your are doing well with all you have been thru too,,, hope you get your surgery soon Laughing

desertgirl947's picture
desertgirl947
Posts: 423
Joined: Oct 2012

A year ago I was jjust starting on radiation.  I had had surgery (double), chemo, and then radiation.  I opted for a double mastectomy because the one breast was just beginning to show signs of cancer and I really did not want to have to go through all of this stuff again.  The pathology reports showed me to be at stage IIIA.

I did not opt for reconstruction because I just did not want any more surgery or recovery time added to what I already had coming.  I (and my husband) am still fine with the decision.  So, I can't give you any helps in relation to reconstruction.

I will say that with the radiation, be sure to keep the lotion on your radiated areas.  I probably could have been more liberal with how I used mine, but I did all right.  I had a little bit of a problem with burning towards the end, but it was not such that I had to delay any of the treatments.  The problems healed quickly.

As for the surgery, I can't say much because I did not get expanders.  What I will say is that you may find it easier to sleep in a recliner chair -- if you have one long enough for you to fit from head to foot.  I ended up sleeping in ours for three months because I am not a back sleeper and sleeping in bed just was not working for me.  I returned to the recliner a few nights when I was dealing with the burns.  I returned again for a few nights after I had my port removed.  To me, getting adequate rest was important, and so I slept in the living room in the recliner.  I did sleep very well.

Be patient with yourself as you deal with the healing process.  Be out and about as you can, as I think that helps with keeping a positive outlook on the situation.  Last year I refused to be holed up in my house throughout all of what was going on.  I felt that being out and about was good for my mental health.  Sometimes I did have to stay put, but that was not for too many consecutive days.

Kobias
Posts: 115
Joined: Jun 2013

I had radiation and am finished now.  I got burnt, but not too bad, and, some don't burn at all, this is just me.  It took a lot out of me as far as I was exhausted.  But, I am doing better now.  Use your creams and get lots of rest.

Good luck to you,

Kathy

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Hi,  My experience is a little different than yours.  I am Stage IIIa, diagnosed in 2008.  I have chosen not to have reconstruction so far.  I had a bilateral mastectomy in April of 2008, followed by chemo, and then starting in September of 2008, 6 weeks of radiation.  Please don't be too frightened about the surgery.  I really don't remember a lot of pain associated with it.  Of course I was given heavy duty pain killers in the hospital and was sent home with oxycodone.  The important thing is not to let the pain get ahead of you.  Take your pain killers as prescribed, and you should be fine.  Oxycodone can cause constipation, so be prepared.  You will come home from the hospital with drains (I had two on my cancer side and one on my prophylactic side) that a nurse will teach you how to care for while you are in the hospital.  They are mostly a nuisance and you will probably have them for a couple of weeks before your surgeon removes them.  There are camisoles you can get to tuck them in.  I just wore big T shirts and pinned them on inside. 

Radiation was a snap.  Be sure and follow your RO's instructions regarding using lotion to help keep your skin supple and from burning.  I used aquaphor and it worked great.  By the end of radiation I was feeling pretty tired, so be sure and pace yourself. 

Everyone's experience is different. Please don't be too afraid of the surgery.  You got through chemo. Hurray!  That was the hardest for me.  Had I the option of chemo first and expanders before surgery and  radiation, I would have done exactly that. 

Best wishes to you. xoxoxxo Lynn

 

 

Rague
Posts: 3305
Joined: Aug 2009

Aug 6, 2009, I was DX'd with IBC and thankfully it turned out to be only Stage III.  That was 4 yrs ago and I am now 4 yrs out and still riding NED (No Evidence of Disease)!

My journey was different than yours.  I did 4 DD A/C then in 2 weeks had a MX.  (Recon is not an option at time of surgery when you're IBC - have to wait at least a year.)  3 weeks after surgery I started 12 weekly Taxol.  A week after last Taxol, I started 25 rads and a week after starting rads I started Femara.

We/Our bodies all handle 'things' differently which is as it should be.  No 2 of us react the same.  For me, A/C was 'easy' and Taxol knocked me on my butt big time - for some, it's exactly the opposite.  For me, surgery was not that bad - some discomfort but not bad.   As Lynne said - TAKE YOUR PAIN MEDS ON TIME!  It is easier to keep pain under control than to regain control.  

Rads - for me - were easy going through and I felt better everyday that passed  (remember that Taxol had turned me into a total couch log).  I had no burning at all until the 24th day and it was just a bit pink, on day 25 (last day) a bit pinker but the next morning I woke up totally blistered in the entire radiated area.   Thankfully the deepest of the burnes were in area where I had no feeling from surgery - have some really 'nice' scars from it.  Rads were finished early March but last scabs did not come off til late June.  What finally healed them were Domeboro soaks.  This much reaction is VERY unusual so do not worry about or expect it to happen - but be prepared 'just in case'.  With all that said, even knowing what was ahead for me - I'd do it again in a heart beat to get the most attack on the monster (but I'd start the Domeboro soaks sooner).

Have you talked with your rads Dr about the ideal time for recon?  It wasn't an option for me, but my rads Dr told me that it is best to do rads before recon as it can effect the recon.  I had thought that I'd look into recon after a year but decided against it.  Afraid of not having the same use of arm after more surgery - I do anything I want to with no issues at all.  Also Hubby did not want me to have it but would have supported me if I wanted it.

Before surgery I would suggest that you see a Certified Lymphedema Therapist to get a base line for your measurements in case you develope lymphedema after surgery.

You will do find - all the 'stuff' will som\on be finished and it will become something in the past.

Winyan - The Power Within

Susan

mjallen7695
Posts: 4
Joined: Aug 2013

Hi there........my name is Michele, I was diagnosed with stage 3 breast cancer at age 36.  My type was hormonal controlled so I had to have 16 weeks of chemo starting jan 9, 2013-may 22,2013.  During my chemo treatments, I had aningrowntoenail I had to have removed and also my grandma died. I had a single mastectomy done on June 17,2013........ Had 6 weeks off of work which I truly enjoyed. I just went back to work aug 1,2013. I started radiation  aug 3, 2013 and will go for 6 wks.     I will say this stay up on your pain medication! Take it every day as directed..........it really does help. Also, do your exercises after surgery. It will help when you start radiation. I didn't do mine very often and now I'm paying for it. My shoulder hurts each time I raise my arm. My surgery went well. I had  15 lymph nodes taken out and only 2 had cancer. Even after almost 2 months after surgery, I'm still numb under my arm.i was also scared about the surgery. Once they took me in and got started, I was done in a snap, or so it seemed. I remember going into the operating room, moving to the operating table, the nurses telling me what they were doing, and once they put the oxygen mask on me, I was out. Next thing Iknew, I was in the recovery room. I think you will do fine. Just don't over think it. That's what I did. It will be over before you know it. Having family and friends at the hospital also helps keep your mind off it.    I just ended my first week of radiation. It wentfairly well. I was really tired though. I wish you the best of luck and keep me posted on how you' re doing.

New Flower
Posts: 3992
Joined: Aug 2009

HI and welcome

I had a unilatteral mastectomy in 2008., stage III C, 21 nodes were removed, 10 were positive for cancer. I wish you good luck with your surgery and easy healing. Please prepare yourself and your family or friends to assist you after your surgery. Your surgeon office should give you instructions, please follow the. If you do not have anybody to help who lives close, please ask people to fly or travel to stay with you for several days after your surgery.

Hugs

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

looks like our Sisters in PINK have provided valuable information for you to sift thru, and digest.  I wish you success, HOPE, and Courage thru your journey, non of us wanted to be a part of.

My 2 cents - question everything, ask for research, clinical trial information - and need be, get a 2nd opinion.  We are here for you 24 hours, 7 days a week.

Strength, Courage and HOPE for a Cure.

Vicki Sam

1surfermom's picture
1surfermom
Posts: 260
Joined: Mar 2009

Hi Tina

I was diagnosed stage IIIa in February of 2009. It is very scary to hear the words "you have cancer" at any stage. I ,like you, did chemo prior to surgery and continued Herceptin after surgery. In my opinion the chemo was the hardest part for me. I had a lumpectomy and the complete removal of my lymph nodes on my left side. Do your exercises after surgery, I kind of babied myself and ended up with frozen shoulder which delayed radiation. If you have time go and get yourself a pretty pair of button down p.js to wear home from the hospital I bought a size larger to give room for the drains. I know it sounds crazy but the new pj's were a bright spot for me.  Wishing you an uneventful surgery.Love Surf

joyster
Posts: 1
Joined: Nov 2013

not sure about expanding you "fast" before radiation- lots of possible complications with that.  definitly don't switch out for implants for at least a year though and you should be ok.  good luck

smbrand158's picture
smbrand158
Posts: 19
Joined: Oct 2011

I had stage III invasive lobular 2  years ago. My treatment was mastectomy of my left breast then 2 weeks later the axilary lymphnodes were removed,  I had 8 rounds of chemo and then 33 radiation treatments and am now on femara for the next 5 years.

I started out very healthy which benefited me as I was luck enought to through my treatments quite easily. The chemo made me tired and I did burn some from the radiation, but all in all I faired pretty well.

It was recommended to me to hold off on reconstruction until at least 6 months after I finished radiation for a number of reasons. I was told that if I had expanders in, the radiation docs are all ready concerned about not radiating anything that they don't need to, like your heart, and then have to try to work around the expanders and it makes their job much more difficult. The tissue in the radiated area can become tight and not stretch as well or break down and there is a greater chance of infection. I have talked to other women that didn't wait and they had problems with tissue damage and a lot of pain. 

I completed all of my treatments and then opted for a diep flap reconstruction 15 months after my last radiation treatment and now almost 8 weeks later everything is looking really good  and I am very happy with the results. 

You are on the right track to be doing your own research and asking questions before you move forward. Good luck, 

Rague
Posts: 3305
Joined: Aug 2009

Another thought - have you talked with your Rad Dr?  Radiation does effect the recon (according to my Rad Dr).  I had not had recon (not an option for me at the time) but Rad Dr did make it clear that recon is effected by rads and it effects rads.   

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

In February 2014, I will celebrate my original breast cancer diagmosis (3A-large tumor, 4 nodes).  That will be 27 years since diagnosis!

I was originally ER and PR=; unknown her2 because test was not available back then.  I had chemo (cytoxan, methotrexate and 5FU-a regimen not used musch anymore).  Also had a unilateral mastectomy and radiation.  Chemo was a little tough, but radiation was just a mild sunburn for me-no other effects that I could tell.  I then took tamoxifen for 7 years.n spite of BRCA neg.

~1995, I had other breast removed preventively because, in the meantime, 2 sisters had also suffered from breast cancer-i

I 2005 (18 years later), I had mets to right ribs and lung (ER +, PR neg, Her neg).  Did armidex and zometa, then faslodex and xgeva and was in remission.

This year, I experienced liver mets and this tumoe tested ER and PR neg and Her2neu +.  Go figure!  I just finished 6 roulds of doxetaxel, herceptin aand perjeta.  Last scan=remission.  I have a follow up scan tomorrow (yikes).  I will stay on herceptin and perjeta until they quit working.

Good luck!  I babble on to give you hope.  For some, breast cancer can be a manageable disease for a very long time!

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