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Help with treatment decision

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

I am new to the BC discussion board but have been a member for a couple of years using the Head and Neck forum because of my husband's BOT cancer.  I was not too surprised when after my last mamogram I was called back for additional views since I have had numerous biopsies throughout my life that were negative for CA.  To make a long story short, this one was biopsied and came back DCIS..low grade but reasonably large.  My surgeon did a lumpectomy taking large margins as I requested.  Then, to his and my surprise, a second foci of papillary ca was adjacent to the original tumor.  Now the cancer board at my hospital is recommending radiation.  I am torn right now about the wisdom of that versus mastectomy with reconstruction and I am hoping that I can hear from women that have done one or the other and get your insights as to the pros and cons of either.  I have a month or so to make the decision as radiation could not start for four more weeks.  I am just trying to be as informed a patient as I can possibly be.  Thank you for any input!

andi44's picture
andi44
Posts: 157
Joined: Jun 2013

This sounds similar to my scenario - I was diagnosed with a large 'high grade DCIS' in March - my original game plan was a lumpectomy & radiation. But, the DR. wanted to do a breast MRI - discovered a 2nd lump...asked if I wanted it biopsed - at that point, I said no - go ahead and do the masectomy (I'm small chested 34a)...However, after having the masect. I had to have another surgery because he couldn't get clean margins and still keep the expander in place.   Even after the 2nd surgery, still showed I had lingering cancer cells - so, I had to have radiation...Radiation isn't horrible...towards the end - your skin does get severly burned, and you may feel lethargic...but, the skin heals quickly - as long as you use cream...I went to a GNC (vitamin) store and bought aloevera cream and I added vitamin e oil...After the treatments were done, I used Eucerin hand cream...My surgeon said that's what he heard burned victims use - Anyway, you have many options...but, if you can't go to a cancer center everyday for 30+ treatments of radiation - than a masectomy might be your option...(I'm referencing the fact it appears you live in AK)  Now that I'm healed from my radiation, I'm looking at getting my implant put in by the end of the year...Anyway, let us know game plan - you have all of our support on this site...

Andi  Smile 

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Hi Jan!  Welcome to the club that no one wants to join, but, since you're here, let's see if we pinkies can help you!  Ok? 

I consider myself one of the lucky ones.  My tumor was small, so, I had a lumpectomy and had radiation treatments after that.  I wanted to keep my breast, so, I was happy that I could.  And, my breast surgeon got clean margins and the sentinal node was clean too, so, no chemo. 

Many women can't have a lumpectomy with rads as their tumors are too large and various other reasons.  A lumpectomy with radiation is equal to a mastectomy in life expectancy and recurrence.

Everyone has to make their own choice though.  None of us choose the same or are alike in our treatments.

Rads aren't easy, but, very doable.  My husband made it a special day for me when he took me, so, I got some good rewards.  lol  I was exhausted and close to being burnt, but, within a few weeks of finishing, my skin looked and felt like a baby's behind.  It still does.

So, I hope I helped some.  Ask anything of any of us and we'll help you.

Sue :)

Smiley hello.GIF

 

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

I was badly burned once, deep 2nd degree burns on my right leg, inner thighs, groin, stomach and hand.  It required hospitalization.

I suffered burns during radiation.  Mine was not in the breast because at diagnosed the oncologist "forgot" to order radiation.  Four years later I had a tumor in the axilla and one of the treatments was radiation.  So the aim was in the axilla up the chain of lymph nodes to the jaw.  When the skin erupted, it was the weekend.  On Monday, they gave me a tube and it was the same stuff I had used when I had deep 2nd degree burns 18 years prior.  It did heal fast compared to the first time.  I assume because it wasn't as deep a burn.  They thought one of the areas was 3rd degree but I was glad it wasn't.  I did loose all the hair in those areas, never grew back and I do have scars, unlike the radiation burn in my neck.

I would take radiation any day over chemotherapy and I did work every day during my treatments.  It was a 2 hour drive for me, back and forth.  Only the last week did I become a little tired.

Glad your ordeal is over.  I never did reconstruction, I think does who do are brave.  By the time I was done with my first time around, I wanted nothing to do with hospitals.  

Best to you,

Doris

 

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I felt lucky also that rads and a lumpectomy were my treatment plan.  The lumpectomy wasn't bad.  It was outpatient surgery and I just took pain pills a few days, nothing horrible.

I had rads about 6 weeks later and got really dark pink, tender and sore, and, was glad when I graduated from them.  lol  Yes, I graduated.  They actually gave me a diploma.  lol

Good luck in your decision,

Megan

andi44's picture
andi44
Posts: 157
Joined: Jun 2013

Doris,

'Wow' is all I can say...you did go thru a lot...I'm so very sorry for you.  When I had the boosters in the end (last 8 treatments), my skin became very raw, oozing and such - but it healed relatively quick...especially the outer area...I too have had enough of doctors & hospitals...I've had other procedures in my life - So, I do think that kind of took the 'edge' off what I went thru with BC...I do wish I knew about this site when I was first diagnosed...I think it does help to by listening to others' stories....

Thank you for sharing,

Andi :) 

Cheryl S
Posts: 82
Joined: Jun 2013

I hope that no one scared you off of radiation.  I had rads and got somewhat burnt, but, nothing severe.  It does heal up.  You just keep the creams on that your rads onco gives you, be gentle with that area, get lots of rest and you will do fine.

Good luck!

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

Hi,

I believe this site is wonderful and so helpful for the newly diagnose.  There wasn't any such thing as the internet for me in 1994/95 when I began my ordeal.   Dr. Susan Love Breast Book was my only source.  I had other sources available as I worked in a library but I couldn't read those other books and etc., they scared me.  I found an internet breast cancer forum in the fall of 1997, it didn't become active until the spring of 1998.  It was a grass root effort by women of Nova Scotia.  They lost their funding in 2010 and are on a closed group on Facebook so old members can remain connected.  It made a big difference in my life to be connected online.  I learned so much in those early years and they were so helpful to me with my regional recurrence in 1999.

I am sorry for your other medical issues, I have others too.  We just keep going like an old Timex watch ad.  Your probably to young to remember the ad.  You can see my photo under Expression by clicking my name.

Best to you,

Doris

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

Thanks Andi for your reply.  You have helped answer one of my questions for sure.  I was under the impression that if I had the mastectomy and immediate reconstruction I would not have to have radiation.  Now I see that radiation might not be out of the question.  Radiation does scare me and I figured that if I had the mastectomy at least I would never have to worry about cancer in that breast at all. 

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

Hi Alaskanjan,

Welcome to the board.  I am sorry that you had to join us but we are a great group.  There people from time to time that have had papillary cancer, I think of you put in the words in "Google" you might find information.  Papillary cancer Mayo Clinic might be a good one and also try this web page:

http://www.breastcancer.org/search?utf8=✓&term=papillary+carcinoma&commit=Search

Best of luck with your decisions.

Doris

 

 

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I can't offer any pro's or con's to a mastectomy.  Some women that have a mastectomy even go on to have rads.  There have been a few on this board as rads kill any stray cancer cells left behind by surgery.

Lumpectomy with rads was what I had.  I also felt blessed that I could keep my breast as it is important to me.  The rads were exhausting, going every day for weeks and weeks, but, I knew it was killing the cancer, so, that helped to motivate me.  I had lunch with my girlfriends, hubby, and family a lot as I was usually driven.

Wishing you the best,

Angie

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

Thank you all, Andi, Doris, Megan and Sue for sharing your knowledge and experience!  It truly helps to be able to communicate with ladies who have been through it and who are so supportive.  I appreciate your insight and will keep in touch. 

My Best to all of You

Jan

survivorbc09
Posts: 4378
Joined: Jun 2009

Jan, that's my name too, I don't want to scare you, but, even if you have a mastectomy, you can still get bc there again.  They can never remove all of your breast tissue, so, the cancer can come back.  It has happened to some on this site.  I don't know who told you it can't, but, they are wrong.  I just don't want you to believe something that isn't true.

I'm very happy that I could have a lumpectomy.  I had rads weeks later.  I didn't burn, but, was uncomfortable the last several weeks.  I healed quickly once finished.

Good luck, Jan

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

I was diagnosed the end of March of this year with DCIS on left breast and Stage 1 invasive on the right.  I was told lumpectomy and rads would be my tx.

I had the lumpectomies and went to see the onco.  He ran a number of tests and scans one of which was an OncoType test which tells them the likelihood of recurrance after testing the removed tissue.  My score came back at 32 stating that chemo was highly recommended.  I had my last chemo infusion today.  My next course was to be 33 rounds of radiation.  After reading of the potential damage caused to my organs by chemo, especially to my heart and lungs, and the potental added danger to my heart and lungs from radiation, I decided on a double mastectomy.

I'm 63 years old and given the choice of losing heart, lungs or boobs, I felt it was a no brainer.  I go in on Sept 27 for the bilateral mastectomy and reconstruction.

This was a personal choice based on personal and family history.  Everyone has to make their choices based on their own history and comfort zone.  There is no one right answer.

I will be praying for you to come to a conclusion that brings you peace.

Sandy

Kobias
Posts: 115
Joined: Jun 2013

We each have to decide on what we want to do as to what is best for us.  For me, a lumpectomy with radiation treatments was offered to me and I was advised the best choice for me, so, that's what I did.

No regrets and happy that I didn't need chemo and that I didn't lose my breast.

Good luck with your decision and just remember that it is about you.

Kathy

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

Thanks to everyone who took the time to let me know how you felt about your treatment.  I will meet with the medical oncologist on Monday and you have helped me generate a list of questions for her.  Why can't these things be simple??  If I knew that having a mastectomy would take away all possibility of having another cancer in that breast and I would not need radiation, I would take that option in a heartbeat!  I will sign back on after my Monday appointment whether or not I have made a decision.  I love it that this site is here, (although I wish that it didn't have to be, ie: that breast cancer never happened ever, for anyone), because it helps to have the support of kindred sisters. 

Jan

 

 

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I wish everything could be simple too Jan.  I wish you the best of luck!  I also had a lumpectomy with rads.  I'd do it again to stop the beast from ever coming back.

Hugs, Diane

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