Hodgkin's Survivors/Secondary Breast Cancer

michellej1980

Thanks for the reply though lifelover!

lifelover

Hi!

Hope everyone is feeling well.

I am amazed by how much energy I have now.  I'm 2 years post-surgery and 1 1/2 years post-chemo.  

I feel like I can do anything I want to!

Hugs to you all

Traii

Hi lifelover,

So glad to hear you have so much energy and are 2 years post DX

You keep doing anything you want. You go girl !!

Take care.

Hope all you ladies out there are feeling well x

Fighter_34

Just checking on you guys. I don't post often, but I lurk every once in a while.

So nice to see everyone moving pass treatment and recovering so well. I too feel, better since treatment as ended my strength and endurance is really up.

hodel13

Hi all,

Thanks for the update, it is nice to hear good news.  I am now 6 years post treatment from breast cancer and over 2 years from my thyroid surgery.  The further out I get the happier I am.  I know some of you are not from the U.S. so you may not have heard of Tracy Nelson (grandaughter of Ozzie and Harriet).  She had Hodgkins in the late 80's and I recently saw on line that she has also had 2 more bouts with cancer.  She doesn't say what kind but I would not be surprised if breast cancer was one of them.  We sure didn't ask to join this club.  Here's to us all being part of the survivor's club!!

Traii

Hodel

6years post bc u inspire me to keep strong and 2yrs thyroid.



We sure didnt ask for this, it is what it is and we have too keep going and never give up.

Thanks for sharing x



Fighter...glad to hear you're keeping well.



We are fighters

lifelover

Hip hip hooray to Traii, Fighter and Hodel!!!!

Mishi

I was successfully treated for stage IIA HD with chemo/RT/BMT from 1990-1992. Was cancer free until this Dec. when I was dx with stage 1B triple negative breast cancer right in the site of my maximum radiation dose ( found on routine memmogran). Had bilateral mastectomies and am now undergoing 12 weekly treatment of taxol/carbo. Maxed out on adriamycin and RT already from previous treatment. It's difficult to resume the role of a cancer patient after 22 years of remission. And it is much harder to do when you're 51 instead of 28. Just finished my third treatment yesterday so 1/3 done!! Mishi

hodel13

Mishi,

I had HD at 28 and BC at 50 so I know how you feel.  The further I got from the HD, the safer I thought I was.  I hope your treatment goes well and this will all be behind you soon.  I finished mine a little over 6 years ago and doing well.  Stay strong.

Hodel

michellej1980

Hey ladies,

I have created a Facebook group for us HD survivors who are at risk of or already have developed BC. I want to try and connect us all more easily as I feel it can be quite isolating being part of this 'special' group. It might also help those not yet diagnosed make decisions regarding avoiding this beast altogether! 

The link is http://www.facebook.com/groups/119043031613581/ and I will need to approve your membership. It's a closed group so nobody but members can see anything we post. please join and post your story! 

Michelle

sammyc

Hi ladies,

Just swinging by to see what's been happening.  I had the lone ranger removed last week and tissue expanders in both.  Everything going well. 

Traii I hope you're hanging in there, your story is very similar to mine.

Oh nearly forgot, thought my heart was up to its usual theatrics but it turned out to be my thyroid going on the fritz (hope you understand my
Aussie)!  The Taxotere & Cyclophosphamide have also taken out my ovaries and I am now post-menopausal )

Decided I didn't have enough on my plate this year so have decided to go study too - keeping it real.  Looking forward to my postponed 40th birthday celebrations in six weeks.

Love to all,

Sammy xx

Traii

Sammy another Aussie girl..yeh! Lol

happy 40th party time !

Glad you got the TEs out.. im not getting any...straight in implants



Surgery date not confirmed for May yet so just enjoying no doc visits until then



Hope you ladies are all well x

lcstrdk

Had hodgkins IIA age 14, IIB at 17. 1980/1985.



1985 was chemo. Mopp therapy/prednisone.



At 35 I underwent triple bypass and 2 mechanical heart valves at Cleveland Clinic, OH.



Now, at 45 just had a complicated double mast.ectomy.



Tough times. But carry on

kle

I just had to respond Icstrdk..your the first Hodgkin's survivor that I have seen with a history like mine.



I had HD at 28

DCIS - single mx at 47

Thyroidectomy at 50

Double by pass at 50.



Are you blaming all your issues on the HD radiation? Did you have your valve issues taken care of during the bypass, or that was at a different time. Something I'm worried about in my future. I'm less than 2 years from the heart surgery.



Sorry to hear you have now joined the BC club. And I hope you are beginning to feel better from that surgery.

Kle

Fighter_34

Greetings ladies, all is well I am still kicking! Nothing to major is going on life is pretty slow nowadys and guess what I am okay with that.

lifelover

Hi Ladies,

It's good to hear from everyone.

Hey Fighter 34, yes I know what you mean - "life is pretty slow nowadays" - it certainly is for me - lots of naps needed.

Kle and Icstrdk, I'm sorry to hear what you both have been through.  Icstrdk, hope you are feeling a bit better now.  Gosh, now I'm worried about my heart big time.

Heart irregularity question:  I've been having a high resting heart rate (100-120) and have had EKG and Echocardiograms but nothing terrible is revealed although I'm told I have a bicuspid valve and a heart murmer. I was told about the heart murmur sometime before my Hodgkins diagnoses so that's not a result of treatment.  I'm having some chest pain but it's not pressure - it's intermittent pain lasting only a few seconds.  Blood pressure normal.  My GP is sending me for another EKG (ECG).  It's been almost 20 years since my Hodgkins treatment in 1995 and I didnt have chemo at the time - only high dose mantle radiation (over 5000 rads coned down over my chest area - where my breast lump was found in 2011).  Are there questions I should be asking about my heart?  Should I have any particular tests to check valve damage? 

Thanks!  

kle

Hi Lifelover,

My opinion is that even though your GP is monitoring you, you should now have a cardiologist on your team, now that the late effects of the chemo/radiation is well documented for HD.  Plus you have other heart issues..   My GP and I decided to add the cardiologist, and before that first appointment I had a mini mini heart attack while in the hosptial for my thyroidectmy.  My cardiologist works specifically with cancer/heart issues..if you are lucky enough to find one of those!    

My issue is "radiation induced coronary heart disease" with a 90 % blockage...the mini heart attack was lucky, because even though I have many Drs.. and a known speedy heart rate...no one knew how serious this was.  This all came as a shock.  I had a catherization where they check the ateries, and they sent me right upstairs to prepare for surgery. She still monitors the heart valves.. so there could still be issues.

So I think it's a good investment, especially since you have a little chest pain..better safe than sorry.

Kle  

lifelover

Thank you Kle.  I have seen a cardiologist and perhaps GP is waiting for the results of my ECG before sending me back to him.  I'm waiting for an appointment for the ECG.  I will make sure I get "seen".

At the moment I am just so exhausted - it feels almost like every fibre in my body is sore and tired.  Some days I feel so good and I can get some work done - then I crash.

Oh well, I don't want to be negative about it so I'll keep going on

kle

HI hope you figure it out lifelover...that exhausted feeling is so overwheleming, I had it in the winter. But I exercised more and lowered one heart med dosage.. and I feel better!

kle

lorithelion

Hi, what interesting posts. I did not have HD when I was 14 but,i did have a mediastinal neurofibrosarcoma which was treated with both surgery and high voltage radiation to my chest and back. Now I am 62. Since 2011 I have had a bilateral mastectomy for breast cancer, a parathyroidectomy for primary hyper parathyroid ism in January of 2013,a diagnostic heart cath in May of 2013 which revealed moderate mitral regurgitation, moderate aortic stenosis,as well as regurgitation, pulmonary hypertension and a 90% to95% blockage in my right coronary artery. On June 11th of 2013, I underwent a per cutaneous coronary intervention during which the cardiologist drilled out the blockage and placed a stent to keep it open. I understand what all of you are going through. It can be a rough road after radiation, however,if one is aware of the risks and finds a good internist,one can hopefully stay ahead of the complications of past cancer treatment and persevere to live another day. Take care, Lori

Mamalyon

Hi, I suppose I belong in this group. I have heard there are plenty of us. I had hodgkins in 1981 when I was 18. Was treated with surgery, radiation and chemotherapy. Had thyroid cancer in 1996, surgery and a radioactive iodine pill. And now, July 2013, breast cancer. Will be having bilateral mastectomy on 7-31 and am still deciding about recon or not. Due to weight and blood clotting issues my only choice is immediate, 1 step implants. I am worried about the pain of no expanders and other issues but mainly it seems like I am inviting trouble. Hate hospitals and surgeries and I just don't know if its worth it.

Taking advice and opinions....

Thanks,

K

lreith62

Hang in there

lreith62

Thinking of you

Traii

Mamalyon

i just had my BMX with immediate reconstruction with implants 2 weeks ago today.

I must say I still have my drains in but if it wasnt for that being a pain itself I feel fine and radiated chest from hodgkins looks good.



Good luck with your decision and keep up the fight x

Kimsha

I am very interested in joining your Facebook group. I tried to pull up your website but couldn't but also clicked on join group for Facebook site. I was treated in 1978 at Stanford University Hospital in California. Under Dr Kaplan one of the pioneers of radiation therapy. I had months of radiation from head to knees, with surgeries to remove nodes and spleen. Have had multiple tumors on thyroid and had thyroid removed, multiple skin cancers, heart damage, lung problems, chronic fibromyalgia, kidney protenuria problems, cervical cancer, stomach surgeries from scar tissue blockages and last but not least breast cancer 2011 with double masectomies, double latissimus dorsi

flap with reconstruction. Recently just finished final reconstruction surgery had a lot of skin breaking issues from radiation. Now am dealing with uterine lining problems

It is 12mm thick with bleeding and I am six years past menopause at 56yrs old. I am having biopsy done in next month. So on ward and forward! It is not fun for sure having chronic health problems but I have two wonderful sons and a beautiful life so I take it all one thing at a time ,deal with it and move on. I do know that without my treatment at 21 years old I would not be here. So I am eternally grateful for the life given me.

michellej1980

I think you managed to join in the end didn't you?

kle

HI Hodgkin friends...I've just added to my radiation side effects....I had a sarcoma ( tissue cancer) removed from my shoulder with clean margins.  Just wondered if any other Hodgkins patients have had an issue with a sarcoma?

Kle

momgie

kle, 

I have come to the realization recently that I do not have IDC, but rather, Metaplastic breast cancer with squamous differentiation. It is a very rare form of breast cancer. In essence I had squamous cells in my breast!? I, myself, am just navigating my way through this diagnosis. 

I was dx with Hodgkin's in '99 at age 32, had 12 cycles of ABVD and a month of radiation. My health was great until August when I was dx with breast cancer. 

Correct me if I am wrong, but wasn't it unusual for you to have squamous (skin) cells in your shoulder?

jkb1999

Are you guys still around or on FB??  I was doing a search on HL and breast ca and found this post and read thru all of them tonight.  I had HL 2A in 1988 and had chemo and radiation to mantle.  Just found out I have DCIS this week and even before knowing about the max lifetime rad dose I was already leaning towards bilateral MX.   If anyone is still around or can direct me to where you lovely ladies are I would love to talk. Thx. J

Toomanytimes

Hi J and any others out there...

Was sadly happy to find this board & will try to follow to Facebook. I had hodgkins in 1976 at 15 - treated w MOPP & full mantle radiation.  Had early menopause at 40 & then goiter & hypothyroidism at 50. Dx w hodgkins again, stage 4, sept 2011. At that time also had developed rapid pulse & high blood pressure. Fortunately after very difficult course completely responded to CT & given good prognosis. Have been doing regular mammograms since 40 but missed 2012 with CT & all other scans. Suspicious mammo 2013 lead to MRI, Biopsy & DX 11/18/13 of 5.4cm DCIS right breast.  Wanted BX but had to fight for surgeon capable of DIEP reconstruction. Finally had surgery 3/3/13 - 16 hours but successful!  Unfortunately pathology now also shows 1.4cm IDC within DCIS, stage 1, grade3, nodes neg, clear margins but ER-PR-, HER2+.   Meeting w onc tomorrow to see what if any treatment available. Additional CT will most likely lead to leukemia for me & herceptin may not be good due to existing heart issues. I have a great team but would welcome your input and experiences. My family & I have really had enough of all this but as I keep reminding myself, the alternative is not very good. Thx.