BC Dx and Hodgkin's Disease Radiation Treatment

Ippuni

missde3 - as Nadine mentioned, TC is taxotere/cytoxan.  My onc recommended it for me because my tumor is grade 3 and, although my sentinel lymph node was negative, my tumor did show lymphatic vessel invasion so it is possible there are still BC cells out there in my body.  It was really my choice - my onc brought my case up with the tumor board at the hospital and also talked with a lymphoma onc directly.  There were varying opinions about whether I should have chemo or just start an aromatase inhibitor now.  In the end, if you averaged out all the opinions, there was a tendency to recommend the TC.  So here I am.  I am guessing because your tumor was grade 2, they decided against chemo for you.  Did you have the OncoTypeDx test run on your tumor? 

Nadine - thank you so much for your info re: TC.  You are right.  We are not the avg BC patient!  I am getting Neulasta (I did have a splenectomy when I was first dx'd with HD in 1980).  I'll be curious to see what my counts are like next week when I go in for treatment number 2.  I know my red cells are down - I had a nosebleed earlier this week and my blood definitely looked on the thin/watery side.  The good news is that since day 10 post-tx I have been feeling MUCH better.  I have been getting out of the house each day which has been wonderful.  So, if the remaining 3 treatments are like the first, it will be fine.  Now I'm waiting to see what my hair is going to do.  I am definitely "shedding" but I never completely lost my hair on MOPP or ABVD.  Maybe TC will do it, though...stay tuned

Karen - welcome!  You are NOT crashing the party.  I'm 45 yrs old - you're not THAT much older.  Anyway - what difference does it make?  We are all in the same boat!  I am sorry to hear about your diagnosis.  I was just diagnosed in March, had a double mastectomy in Apr and started chemo in June.  Please let me know if you have ANY questions at all.  I have an adopted daughter who is 14.  My diagnosis was not easy for her - it does not help that I am her only parent - she is worried about losing me.  However, I have gotten her some help and she seems to be doing better.  I told her she is stuck with me for quite some time to come!

kerry32

Hi all, just found this thread.  I had hodgkins in 1992 at 34 - had the chemo, mantle rads and prednisone and had a nice 16 yr remission.  I had been warned that they were finding out that women with hodgkins about 15 yrs ago and longer were getting BC.  And I did.  No node involvement - choose a bilateral mast as i just didn't want to deal with worrying it would show up in the other breast.  what a club we have here!

7timewinner

Welcome, Kerry32!

As always, sorry you have to be here, but know that we are here to support you!

Nadine

Ippuni

Hey everyone-  TC has done what MOPP and ABVD couldn't - I am now bald!  It is kind of fun, actually.  The ultimate in a cool "summer cut" .  I go in on Thursday for my 2nd tx.  Wish me luck!

Welcome Kerry32!

missde3

Hi Ippuni - to answer your question - I didn't get the OncoTypeDX done because I didn't really have any tumors.  I had 3 little spots of IDC.  Two were .15cm and the other was .30 cm.  So - the onc said too tiny to test.  They're considering just Tam right now.  Got two different opinions on that, too.  One yes for Tam and one no.  So I need to see a third.

Good luck with your treatment!  Good wishes beimg sent your way!  Hugs!

missde3

Kerry32 - I too opted for the bl mast.  I had rads in 1988 at the age of 28. Just celebrated 20 years cancer-free in Oct (never celebrated before - thought 20 years was a good starting point).  Had my 1st celebration for that only to have bc 5 months later.  What a kick.  Had surgery 5-6-09.  When was yours?

taranebraska

Hi - I'm 45.  Am I too old to hang with you all? 

I had Hodkins in 1997 as a 34-year-old.  I just had a breast biopsy yesterday, 12 years later, and will meet with biopsy doc to discuss results Monday, July 20th.  I was in denial until I started researching things today, at work, that I shouldn't be.  I found this topic.

Is there a resource to prepare me for this discussion with the surgeon or better, the oncologist when i get the bad news? 

reeney77

you sound exactly like me - researching things you shouldn't. i did the same things and so i wasn't really surprised to get my BC diagnosis. i think when you've had cancer once, your mind automatically goes there. However, from the study that said that patients who had radiation to the chest get BC 15 years from diagnosis - the patients received radiation in adolescence when the breast tissue is starting to mature. so don't be too quick to jump to bad news. you could just have a benign spot or fibroadenoma.

kerry32

missde3 - i had my surgery Feb 08.  I was 16 years in remission when I was diagonosed with the BC.  How are you feeling?

missde3

kerry32 - Feeling better everyday.  Emotionally, it's also getting better.  Hopefully last fill on the 27th.  TEs are not so comfy.  Very hard.  I also have fibromyalgia so sometimes the fills trigger spasms on my sides.  I told the doc it feels like rubber balls glued to my chest that I can't feel but I know it's there!  Will have exchange done in Sept, I think.  My big 5-0 is Aug 26th so I don't want to be recovering.  Ironically, I was going to get a breast lift so I've been saving for a year (I had lost over 100 lbs - I gained it from other med issues including dead thyroid from rads).  Now I guess it's a vacation fund!  We're hoping to go hot-air ballooning.  This whole situation with the bc was so devastaing to me.  I was so angry.  Still am.  Especially because they want me to go on Tami.  I don't want to.  No where near menopause yet.  To be 28 then 49 and to be diagnosed with 2 different types of cancer and that the cure for one caused the other - well, SUCKS!  But, we are tuff, I'm doing ok.  Thanx for asking! 

 taranebraska - you're not too old!!!  I'm 49.  It doesn't matter your age - it's the dx and treatment that you had that brings you here.  It's hard for all of us to get thru regardless of our ages.

7timewinner

taranebraska:

you are certainly not too old to be here! I just turned 40, so we are close And reeney is correct...the women who tend to get BC after HD rads are those who were irradiated as children/teens. So hang in there, it may be nothing. Praying that's the case for you! Let us know how things go...

Nadine

taranebraska

Hi all.  Thank you for your warm welcome.  Good news and bad news.  It's IDC, but in situ, Stage 0, grade 3.  I'll have an MRI Thursday - then work on scheduling a lumpectomy to make sure we get everything.  There appears to be questions about whether I can have any more radiation so at some point I'll have a consultation with radiologists.

I was IIB-ish on my HD, and I wanted nothing to do with chemo, so I got rads to mantle and abdomen.  What's the thinking out there - is it better that I go to the same hospital system who initially treated me, in my case, the University of Nebraska Med Center who have experts on HD and non-HD lymphoma?  I got my mammogram in  a different hospital and they're ok, but they keep forgetting I had HD!  Thanks for everything...

reeney77

i went to a different place altogether - i think it's more important to get a great breast surgeon and oncologist rather than a person who knows HD. one clue is if you meet a breast dr or an onc who does know not about the correlation between radiation and breast cancer, then you need to find another. my breast surgeon was very knowledgable about the subject as well as how much radiation i probably receieved in childhood and the best treatment options for me.

missde3

taranebraska - so sorry to hear about your dx.  hang in there!  you said you have IDC but in situ.  IDC is invasive - in situ is not.  maybe it's all just DCIS (ductal carcinoma in situ) and not IDC(invasive ductal carcinoma)?  IDC would usually put you at least a stage 1, DCIS a stage 0.  Hopefully all DCIS!!!  Please let us know what's going on.  we care!  hugs...

taranebraska

Hi all,

Thanks Nadine for starting this thread.  I thought things might be easy for being DCIS stage 0, but with the complications of HD, and the grade 3, the choices are still hard.

missde3, kerry32, lppuni:  you 3 decided to go with mastectomies (sorry if I missed anyone else).  The oncologist and radiation oncoloist are concerned with recurrence and new cancer springing up in other breast tissue given the HD history and my DCIS being grade 3.  So, their advice was if I never want to face BC again, mastectomy would be the choice.  I'm feeling that's pretty radical at this point - but I just don't know.  I don't want cancer yet again.

 The surgeon says I don't have cancer.  So my husband thinks we got everyone upset about nothing.  Kinda cute thinking about it today, but it was so not cute yesterday.  They are also talking about Tamoxifene but my tests have not yet determined estrogen sensitivity yet, or we have to find that particular test.

I'm leaning toward the lumpectomy with a good 2 cm margins so they can say conclusively no cells grew out side the duct.  Then I just do good follow up with mammograms and go natural with food and good vitamins and herbal supplements.

Any thoughts?  I've got til Aug. 6 to really decide ...

missde3

taranebraska - if you only have DCIS, it's not invasive.  that's a good thing.  a lumpectomy is ok if they can get clear margins.  as for me, i had two separate cancer sites in my left breast so a lupectomy for each would have left me with a terribly misshapen breast.  they would not even consider a lumpectomy without radiation.  i had so many calcifications that they didn't know where the clear margins would have been during surgery.  my case went up to the hospital tumor board to be discussed and after all the docs talked about my case, the mastectomy was the consensus among the docs.  even my rad onc agreed.  he didn't want to do more rads on me.  i opted for both breasts to be done.  i talked to every doc, nurse, pa, friend and relative and got opinions.  i knew in my heart it's what i had to do for me.  it was one of the hardest decisions i'll ever have to make in my life.  it's not something to mull over lightly.  i opted for the BLM because i knew if cancer appeared in the right breast, my only option would be another mastectomy anyway.  i figured it was better for me emotionally to live my life with this fear gone.  no more mammos or mris.  DCIS is cancer!!!  it's just caught early.  if not taken care of, it becomes invasive.  i know how you're feeling.  my initial dx was DCIS from the one cancer site.  we knew there was a possible 2nd site and after the surgery, it was also DCIS but with 3 tiny little invasive components.  i'm glad i did what i did but taranebraska - it's your life.  only you know what is right for you.  you have to sleep at night knowing you did what's best for your situation.  it hasn't been easy to go the route of BLM but it's something i felt i had to do.  i, too did not want another dx of bc in the futre.  my thinking was - both breasts had rads, mammos, ct scans and x-rays.  if it came in the one, why wouldn't it come in the other?  and if you need more time to think about it - take the time!  don't let them rush you into it.  make the right choice for you.  one question - are they considering rads, too?  my heart is with you.  heal emotionally.  i'll be thinking of you!  BC after HD sucks!

kerry32

taranebraska  - You do have some decisions to make now that all the tests are in - and it is very difficult.  I felt like missde3 - the cancer came from radiation and the whole upper mantel was radiated so I just didn't want to think or worry about it coming back.  Also, I was told that a lumpectomy was usually followed by rads and that was out for me since I already had it.

It was a personal decision for me to do the bilateral and be done with it.  But it doesn't mean it's the only decision and you need to make your own decision now based on what you've learned and what you feel in your heart.  You sound very informed and intelligent so I'm sure you're decision will be the right one for you.

Ippuni

taranebraska - When I first got my dx of IDC via needle biopsy, I was prepared emotionally for mastectomy on the one side.  I was not prepared for the bilateral that my surgical onc rec'd when I went to discuss options with her.  She told me that my risk of developing cancer on the other side was roughly 250 times the risk of the normal woman due to the mantle radiation I had when I was 16 years old.  She said that if I did not have the BLM, it was highly likely that I would have to go through everything again.  I made the decision right there in the office to go with the BLM although I left feeling depressed.  It took me quite a while to come to terms with it emotionally.  I felt better after I had talked with the plastic surgeon and we discussed reconstruction.  Once I decided to go ahead with implants, I felt emotionally much better.  I had the BLM with immediate implant reconstruction on 4/28 and I am happy with the results.

All that said, everyone is different.  You did not have mantle radiation as an adolescent.  You do not have IDC (although you DO have cancer).  Take the time you need to decide what is right for you.  There is no need to jump into surgery.  If you do decide on lumpectomy or unilateral mastectomy, make sure you get breast MRIs, not just mammograms on the remaining side.  Some lumps can be missed on mammography.

 Good luck with your decision and if you have any more questions, fire away!  btw - we are the same age!  I am 45, too, which is definitely NOT old 

Ippuni

Hey everyone -

Just wanted to mention for those who may not know.  Be sure to look in the mirror (and feel/palpate) for any lumps in/on your thyroid.  My PCP missed the "adam's apple" growing on my throat and so did I for quite a while.  It turned out to be cancer, also caused by the radiation I had for HD.  Don't rely on your docs to catch everything!  Look yourself.

 (Your HD Public Service Announcement for the day!!!)

7timewinner

Hi, Meg

I have a biopsy of my thyroid scheduled for Aug. 5th. Doesn't look good...a huge cold nodule on the right lobe. Uggh! This is getting old, lol!

Nadine

missde3

I'm going tomorrow for my thyroid ultrasound.  Good luck 5time...hopefully all is good...

7timewinner

Thanks, missde...

Let us know how the ultrasound goes, too...if you want to share

Nadine

missde3

Whew!  Ultrasound was clear!  Nothing found, thank goodness!  I felt a little thickening on the side but didn't tell my family but all is clear.  I hate these 'hold my breath' tests! Looks like I will be having my BC exchange surgery in the fall.

5time...Feel good after the biopsy and I'll be saying more prayers for you!

Denise

Ippuni

Nadine - I am so sorry to hear your news.  It is unfair that after all you've been through you have to deal with this now.  There is a good chance your nodule is benign.  Good luck with your biopsy on Wed - we'll be thinking of you! 

If it is any consolation, thyroid cancer was the easiest of the 3 to deal with for me.  No chemo.  No radiation.  Just surgery and radioactive iodine treatment (and thyroid supplement for the rest of my life.)  Nothing like what we've already been through!

I was lucky in that the most malignant of my 3 nodules (an unusual "tall cell variant")  was encapsulated and my surgeon was able to get it out intact.  If you do need surgery, make sure you get the surgeon in your area that has the most experience with thyroidectomy - go ahead and ask specifically how many he/she does in a year and how many years they've been doing it.  The surgeon makes a HUGE difference.

 Hang in there.  Hopefully it will all be OK.  Sending you good thoughts and good luck!

 missde3 - good luck to you too! 

Ippuni

missde3 - Just read your post.  So glad to hear that your US was clear.  Congrats!!!

 -Meg

missde3

Thanx to you all! 

7timewinner

Meg, thanks for all the advice/info about your own thyroid situation. I am keeping fingers crossed that it's nothing, but it sounds do-able if it is cancer.

Thanks!!

Nadine

7timewinner

Hi, everyone...just an FYI...if anyone else here is facing a thyroid biopsy, rest assured...it was a piece of cake!

missde...I just now caught your post...clear ultrasound, hooray!!!

reeney77

i'm now having a thyroid ultrasound because of you guys!! hehe. i had mine biopsied about 5 years ago so i'm gonna have it ultrasounded just to monitor it.

missde3

Hi guys - I just got my 'official' US report.  This is what it says: 'The thyroid sonogram revealed a small gland that is consistent with hypothyroidism.  No treatment or further sonograms needed.'  Now, I am sitting here wondering what to do?  Do I call them and ask them to compare it to my other US from 9 years ago?  Do I remind them I had radiation treatment or do I wait the three months until I go back???