BC Dx and Hodgkin's Disease Radiation Treatment

missde3

Nadine - when will you get the results?

missde3

Nadine - how are you???

7timewinner

Hi everyone!

Great news...my thyroid biopsy results came back...not cancer!! But I still need to follow up closely with a endocrinologist because I was told "this is not to say that it will *never* be cancer though..."

Doctors can never just let you have your happy moment, ya know? LOL.

I recommend that we former HD gals keep a very close eye on any physical signs of nodules, etc. and get connected with a good endocrinologist who understands the radiation/thyroid issues we can be challenged by. I will push for some kind of treatment for my enlarged thyroid...it may just be reactive from the chemo, though. So time may tell...

We all have to be proactive about questionable breast, thyroid, lung, and skin issues/symptoms in our field of radiation...these are the areas presenting with late-effects. And we cannot presume (as I have quickly learned) that our primary physicians (or even specialists) will fully understand the need for careful monitoring.

Chers,

Nadine

missde3

Nadine: So glad all is ok!  the tyroid can swell due to hypothyroidism but for us it's a little more scary.  My thyrois was so cooked it's hardly visible on the US.  I did call the endo's office to make sure they compared my two US's and they said it was the same as last time.  I can feel the bump under my jaw, though.  So, when  I go in Sept, I will make sure they examine it again.  I'm so glad your news was good!

Ippuni

Nadine - Yee Haa!!!  I'm so happy your biopsy is clear!  You have made my day

(I have been away for 2 glorious weeks at the beach.  That is why I haven't been "around" lately.) 

Thursday will be my last TC treatment.  It will be great to have it behind me.  Hope everyone is doing well.

7timewinner

Thanks, everyone! I couldn't be happier about the results myself. I am only 5 rads treatments and an oophorectomy away from being done with main treatments. It has been an incredibly long haul since January 29th, but I know you all understand

Meg, enjoy that final TC treatment! It will feel absolutely wonderful and in my case, felt a little surreal. You did it

missde3: way to keep on top of that thyroid! we have to be pushy at times, but it's our health, so worth it all

missde3

Nadine - do you have to have your ovaries removed due to the grade, lymph node involvement or stage?

taranebraska

Hi everyone.  I posted about a month ago about my DCIS.  Glad to hear there is lots of good news on this forum!

This week, I am in Zion, IL at the Cancer Treatment of America hospital.  My treatment team at home in Omaha was pretty dismissive, and suggested lumpectomy and then 5 years of Tamoxifen.  Here in Zion, they are suggesting lumpectomy and if necessary, mammosite radition for 5 days.  The Omahans felt that even mammosite rad wasn't okay for me.  I had 3600 cGYs of radiation to both mantel and abdomen in 1997.  The Zion folks believe Tamoxifen won't benefit a 45 pre-menopause woman very much.

 Any thoughts?  Any of you have to consider mammosite radiation even though you've had it before?

7timewinner

missde3: I am having my ovaries out by choice, because I do not want to take Tamoxifen for 5 or more years. Mind you, I will still take an AI of some kind once I am clinically menopausal, but from what discussions with my onc and gyn, and my own research, I would prefer to take my chances on the AI side effects rather than those of Tamoxifen. Not that I think there is anything wrong with women taking Tamoxifen, it was just a matter of figuring out what would work best for me.

It was suggested that I take Tamoxifen or have my ovaries out because my tumor was strongly ER positive. Either option stops production of hormones by the ovaries.

taranebraska: I never had mammosite rads, but I did have mantel rads in 1987 for the HD. When it came down to making choices about my treatments for BC, my previous rads exposure was certainly discussed, but because of the extent of my disease (17 positive nodes), I had to have more rads. anyway. Maybe someone else has experience with mammosite rads and can be of more help to you, sorry. Good luck with everything!

Incidentally, for those of you who will be having rads in the future...I know that everyone responds differntly, but I just wanted to note that I am VERY fair-skinned, and I have tolerated rads quite well. I have 4 more boosts to go, then I am done. Barely pink skin, no pain at all.

Nadine

missde3

I had gone to my gynie to figure out my treatment since I have a history of Polycystic Ovary Disease.  Gynie said because of that, I would be at a higher risk for SE of Tam, mostly the uterine cancer.  No one wants me to shut down or remove ovaries but my cancer was limited to the breast with only three tiny little spots of IDC.  Most was DCIS.  Our cases are certainly different!  I, too, hate the SE's of tam so I haven't started it.  Am going to get a 2nd opinion since the risks might outweigh the benefits in my case.  My IDC was only .15cm, .15 cm and .30 cm.  Lymph neg.  My chance for recurrence was put at below 10% and another study in today's paper said that women on it can develop ER- breast cancer from the tam and it's more aggerssive.   Even tho I had BLM, I don't like all these bad things!  I'm with you with the uneasiness with the tam.  So many decisions!  All with their own consequences.  When is your surgery scheduled?

7timewinner

Sept. 8th is my surgery. If all goes as planned, it will be laporoscopic, and I will be home the same day.

The Tamoxifen is definitely a case-by-case personal decision. It has done wonderful things for so many women, as have the AIs. I am all about hitting the BC with everything available to prevent recurrence. But it's important to understand the risks, for sure. One of many difficult decisions for us on this path

Good luck making your own decisions about it. A second opinion always helps!

Cheers,

Nadine

Ippuni

Hey everyone.  I'm done and it seems surreal to me, too, Nadine!  I'm still deep in the post chemo state - basically a couch potato with few working brain cells.  I'm looking forward to the return of energy so that I can actually celebrate being done (and start to knit some hats for the cooler weather!)

Nadine - Good luck with surgery on the 8th.  We'll be thinking of you.  I brought up the question of oophorectomy with my onc  (there is a part of me that wants to have all my spare parts out just in case!)  She does not rec the surgery for me based on my history alone (BC most likely due to HD rads) but because I'm adopted and have no idea of family history, I'm going to have genetic testing for BRCA genes just to be on the safe side.  If I do have a BRCA mutation, I'll definitely go for the surgery.

taranabraska - My onc decided no rads for me but I'd already had rads twice to my left breast tissue (mantel for HD in 1980 then more focused radiation for an HD recurrance in/around my left breast in 1984).  I will start an AI at the beginning of Oct for at least 5 years (I'm 45 and have been menopausal for about 8 years.)

 Hope you are all well!

missde3

Hey Nadine:  Good luck!  I guess the recovery will be easier with only a few 'holes' in your belly instead of a full cut.  I'm sure you'll be sore for a few weeks at least.  Hope you have help!  I find I always need 4-6 weeks for surgery recovery.  Prayers for you

Hey Ippuni:  Glad treatments are over.  Now for the 'adjustment' part - again!  Our poor bodies going thru all this.  Get rest - feel better!

Hey taranebraska:  My treatment team would not even consider re-radiating any part of my chest due to the previous rads - any kind at all.  I did ask about that treatment but everyone said 'no' due to re-radiating the same areas.  I was hoping I wouldn't need a mastectomy but I had two spots of cancer in the left breast so I wouldn't have been able to do lumpectomy w/rads anyway. My rad onc said that if my margins were clear and if it was in a certain tiny little spot that was covered by the lead shields with the original rads, I could maybe, possibly have the balloon treatment. The chances were slim for everything to line up perfect so the hospital tumor board concluded that the mastectomy was the only way to go.   I was hoping I wouldn't need a mastectomy but I had two spots of cancer in the left breast so I wouldn't have been able to do lumpectomy w/rads anyway.  As for Tam, I was told if I just had DCIS, I wouldn't need Tam or chemo because it's limited to the ducts.  I was told they sometimes don't even test it for hormone receptors.  Like I said before, there's so many decisions regarding breast cancer.  HD treatment seemed so easy compared to all this!  Good luck with your decisions!

charua

Hi! I am new here. I had Hodgkins IVB in 1996 at 18. I did chemo and radiation at that time. In 2004, they found lumps in breast. They biopsied them and they were fibroadenomas, sclerosing adenoma, and typical ductal hyperplasia. In 2007, they found more lumps which turned out to be firbroadenomas. Well, they found another lump 2 weeks ago. This one does not look like a fibroadenoma based on the shape. Its small (less then 1 cm). I had a breast MRI on Friday. Tomorrow I am scheduled for a biopsy. As of Friday, we were only going to biopsy that one lump but she is going to review the entire MRI today and decide if anything else needs to be biopsied.

I am really nervous. If this is not cancer, I am considering talking to my doctor about a preventative masectomy. The emotional stress is killer! If this is cancer, I don't know what I would do. I have a 2 and 4 year old that keep me very busy (my 4 year old requires extra therapy plus I work part time while they are in preschool).

 I have been reading your stories and am in awe of your courage!

Thanks for reading!

7timewinner

Charua,

I'm sorry you have to be here, but know that you have endless support!

First...breathe. I understand pretty much everything you are probably feeling right now, especially when it comes to your children. Mine are 3 and 18mos

IF this is cancer, and we all hope it is not...your children will be fine, I swear. I just survived 9 long and challenging months of chemo and rads and surgeries, and my children survived right along with me. I also continued to work as much as possible during my treatments. So please know that IF you have to deal with BC, it CAN be done. And we are right here to help you every step of the way. We can answer some questions, we can talk you through the hard days, we can listen.

God bless you and let us know how things go with your biopsy. I'll be praying for you.

Nadine

charua

Thank you so much for your kind response! Its always great to talk to someone who has been there and can relate!

 I should have my results on Wednesday (which seems far away)!

 Wow - you were diagnosed when you had such little ones. You sound like a strong woman and an inspiration!

 Charu

7timewinner

I'm no stronger than anyone else here...you'd be amazed what you are capable of handling when you need to

Please stay in touch!

Nadine

Ippuni

Welcome Charua!  We're here to help as much as we can.  I hope your biopsy went ok yesterday and you are feeling ok today.  I just finished chemo for BC after having a bilateral mastectomy at the end of April.  Before I started treatment, it seemed overwhelming and I didn't know how I was going to make it.  As it turned out, the anticipation/stress beforehand was the worst part!  I got through treatment and am now doing great.  Hang in there.  We are all hoping this is another benign lump.  If it is not, however, you will get through it and we'll be here to help.

missde3

Hey Nadine:  How was your surgery and how is the recovery?  I hope all is well with you.  All was good with path results, too, right?  How are you feeling?

charua: Welcome!  How did the biopsy go?  Get any results yet?  As you know, the waiting is sometimes the hardest part of the whole thing.  When you read all our posts, you see we've all been thru a lot and we're such a small (lucky) community with specific needs.  There's not many of us out there!  Keep coming back here if you need support!

As for me, they found a swollen lymph node under my jaw on the right side.  I saw an ENT doc yesterday and I'm getting a sono today to see what it mightbe (ugh).  Will get the results next week - the sooner the better.  The doc seemed concerned/not concerned at the same time but with my history, something has to be done.

Saw a new onc yesterday, too.  Liked her much better than the other one.  They said good thing I had the BLM because the right breast path report showed 6 things and 5 of them are precursors to cancers.  So, I definitely made the right choice.  No chemo, no tammy train for me.  I was lucky that my IDC was so tiny and she said the MRI saved my life.  Will follow up in three months. 

Does anyone here get a chest x-ray every year and what vaccines did you get if you had your spleen out?

charua

The biopsy went well. I was pretty sore. The mass turned out to be benign (yay!) but they did find atypical lobular hyperplasia.  I am going to see some breast surgeons in the next few weeks.

My doctor was advising that I have it removed. I was going to talk to the surgeon about my risk factors. I was wondering if I was a good candidate for prophylactic masectomy. I am 32 and have had to have a biopsy after EVERY mammogram due to suspicous masses - they turn out to be all kinds of different things but always benign (well the aytypical hyperplasia is a risk factor). I have mammos or MRI's every 6 months and I can't imagine having biopsies a few times a year for the rest of my life!

 Any opinions on that?

missde3 - I hope the swollen lymph node is nothing

lppuni - thanks so much. I think whats scary is remembering how crappy chemo was! Thanks for your thoughts!

missde3

charua - YAY!  Benign is good!  Have you had an MRI?  My left breast had 2 spots of BC.  MRI showed both, US showed 0 and mammo showed 1.  Good luck with your decision making.  Weigh all options.  I miss my breasts terribly but I don't miss the worry.  Get a good doc or two and discuss, discuss, discuss.  Don't make a quick decision - you have some time.

Thanks for the good wishes!  Will hopefully get the results on Monday...

TennesseeMichele

I haven't posted in a while, but I've been keeping up with everyone.  I'm kinda in this group and kinda not.  I had HD in 1991 but radiation wasn't part of my treatment.  Hope you don't mind if I tag along!

missde3, since my spleen was removed, I wonder the same thing about vaccines each year.  I got the flu shot for a couple of years, but I bet it's been 10 years since I've had one. 

Has anyone gotten the shingles vaccine?  I had shingles a year after chemo ended (for HD) and I wonder if that will surface again....

Michele

7timewinner

Hi, all

My surgery (laporoscopic oophorectomy) went well...very easy recovery, actually. and my post-treatment PET/CT scan was all clear!! Hooray!

Charua, so glad to hear of your good results as well!

Hugs to all,

Nadine

TennesseeMichele

Hi everyone, 

Nadine, I'm glad to hear that your sugery went well.  I had an ooph 11/08 and it went smoothly, too.  Although my surgeon said I had LOTS of scar tissue from the splenectomy from HD so it slowed him down. 

From reading here and other threads, it sounds like MRI's are the way to go, too, so I'm going to request one.  I've only had mammos.  I see my onc. tomorrow.

Michele

missde3

Results:  2 swollen lymph nodes, left smaller than right.  doc is/is not woriied.  will see her again in nov.

5time glad all went well.  stay healthy now!

7timewinner

missde3: wonderful news!!

Yes, staying healthy is the goal now, thanks!

Nadine

michellek

I felt so alone, until I just found all of you!  My story is similar. I had Hodgkins when I was 19, in 1979), with radiation and a spleenectomy.  Then in 2004, at age 44, I found out I had Breast Cancer and Thyroid Cancer.  I had 6 months of chemo, bi-lateral mastectomy, a thyroidectomy and 5 yrs of tamoxifen.I'm just starting to feel strong again, and found out today, I have to have an ultrasound and biopsy, because they are checking for Endometrial cancer.  I am sick all the time, have constant,horrible headaches, chronic fatigue and ear ringing, etc., but I am so grateful to still be around!  I try to be, and AM so strong. But sometimes it's really hard.  I try to keep myself constantly  preoccupied so that I can't think about the weight of what has happened to me.  I joke and say that I suffer from PTCS,,,,Post Traumatic Cancer Syndrome! I would love to be able to communicate with some of you.  It feels better already, just knowing that I'm not alone.

TennesseeMichele

• michellek,

I'm sorry to hear about your upcoming biopsy and ultrasound.  Keep us updated, ok?

 I have ringing in my ears all the time, too.  I'm so used to it I hardly notice it, but when I do it drives me crazy.

 Michele

missde3

michellek: I have ringing in my ears, migraines, hypothyroid, fibromyalgia, chronic fatigue, skin probs and a whole host of other issues.  We all know how you feel.  Doctors don't seem to put all the pieces together to know a lot of our complaints are due to the rads.  The breast cancer was a wake-up for me that I will never be safe.  I always looked at it like this:  BC/AD: Before Cancer/After Diagnosis.  I guess we are all in a combo of After Daianosis/Before Cancer/After Diagnosis.  it is so disheartening but we plug away at it.  I swear the rads did something to the base of my brain, too.  Never did feel right after all the treatments.  To me, it's like I'm always waiting, always waiting.

michellehb

I think I might be the oldest here. I had HD at age 13 - radiation to mantel, spleenectomy, no chemo. I went 32 years cancer free before BC dx. I had nipple-sparing bilateral mastectomy, and am now almost finished with chemo - ACT + Avastin/placeo (clinical trial), though I'm probably bailing soon on the trial due to cardiotoxicity concerns. Tamoxifen is next, but considering ovary removal and other options. I'm boderline on rads with 2 pos nodes. Based on prior rads, my rad onc thinks risks are greater than rewards, but we revisit in a few weeks when I'm done. Can't wait!