Posted on: May 8, 2009 09:39 PM, edited Jan 4, 2012 10:48 PM by 6timewinner
I am looking to connect with anyone who has been diagnosed with BC, and who also received radiation treatment to the chest for a childhood diagnosis of Hodgkin's Disease. It is now understood by the medical community that radiation treatment to the chest for HD "back in the day" is resulting in several long-term side effects in women, including secondary cancers like breast cancer.
I am one of those women! I had HD when I was 14. I am now 39. Since then, I have had 3 cases of skin cancer, a thyroid issue (also likely from the radiation), and now BC.
Since my HD diagnosis 25 years ago (I have been considered in full remission for 20 years) I have been a participant in a research study to examine the long-term side effects of radiation treatment to the chest. Because of this wonderful study, Hodgkin's Disease treatments have been changed to prevent these types of secondary effects.
If anyone else here is in this category, feel free to share your story here, and talk to others who understand your situation. I'm also happy to share what information I have on the risks of secondary cancers and other long-term effects for this group, and other issues specific to our health histories.
I placed this in the "Young Women" category because most of us are probably under 40, or not too far over 40.
Posts 301 - 330 (347 total)
Jul 3, 2012 08:53 PM me_4givn wrote:
I had two drains removed and should have the other two drains removed on Tuesday. I have no pain in the right breast (my cancer side) and pain in the left breast. I took pain medication for 4 days and now I am taking Motrin. Still can't shower, two drains remain in (really rotten!) Bathing with wipes. Dressing changes daily by myself or my husband. My mother flew out from Colorado and is helping (I love that my mom is around, helps when I get tearful!). I drove for first time today and went out in public. I should be starting my herceptin again soon. The surgeon forgot to take out my mediport (ahh!) I guess it maybe a blessing?! They will take it out when I get my exchange. My breasts look scary but I guess I should be thankful because, according to my plastic doc, "I filled them with 180cc so you have something." They look strange and feel like they are not real (there not!). I am going crazy sitting around and hope to do a quick trip while out recovering. I feel pretty good other than some discomfort and I am super careful with cleaning wounds.
Fighter- I love your hair!!! Mine is just now coming in and I look like I have a five o'clock shadow on my head. Peach fuzz with some dark hair :)
Hang in there girls, this sucks but we can do it. I have good days and bad days. Find I cry a lot lately, blaming it on the BMX.
Blessing and hugs,
Jul 5, 2012 11:12 AM stagefree wrote:
I had stage 2A HL 20 years ago, when I received both AVBD & mantle rads. In 2004 I found out during my mother's stage 3 BC treatment, that as a 6-year birth control pills user above everything else, I "probably" was not far from a similar diagnosis myself. Well, that's when I first seriosly considered having a baby, in my 7th year of marriage. Now my son is 7 years old. After my recent diagnosis, I gave up my business and now am focused on my family and therapy. Well here I am on BCO, mostly on stage 4 threads, hope none of you will ever have to visit.
It was a very traumatic experience to go through that horrible therapy, to which I am thankful to have had the great 20 years. Now it is pay back time, I guess....
Jul 5, 2012 12:46 PM, edited Jul 5, 2012 05:27 PM by Fighter_34
Jami it will get better trust me. I have settled into my new normal and things are finally feeling normal. I can't explain it but you will even out sooner rather than later.
Stagefree-(((HUGS)) It is tough no matter what stage you are. This is a tough pill to swallow. We are all scared. I would like to respond to your comment "Now it is pay back time, I guess..."
Someone on the tri-neg board said this and it stuck with me. You do not have an expiration date, life in itself is terminal, so with that thought everyday for everyone is a gift. Focus on doing things you want and taking things as they come.
Jul 5, 2012 03:45 PM stagefree wrote:
Thanks Fighter. I spend too much time on the Stage4 boards, I realized my post does sound a bit sad. Normally I am more positive:)
Great hair by the way, yours is definitely a motivating avatar.
Jul 9, 2012 12:22 PM me_4givn wrote:
I was wondering who has had a double mastectomy? I am right at two week post op and seem to be doing well. I still have drains in and they should come out this week. I get tired after a full day of activities (church, lunch, son's play, and dinner with the family). I think I over did it a bit (not to mention we were in Palm Springs with the weather being 110') Overall I am moving well, can lift my arms and have been doing light cleaning (making beds, cleaning bathroom). How long did it take for any of you to go back to work? I am thinking I should be good to go in 2 more weeks. I have a lot of lifting at work so I will be checking with the doc first but I really want to get back to normal (or there of) I know God has given me the strength I have and I am truly grateful for His love!
Thank you for sharing :)
stagefree-The journey is very hard! Cliffs and rock slides can crush us at any moment but we have a safe place to have guides with knowledge and experience to help us through our journey. Glad you are here (so sorry you have to be!) This is a great place to be real and open and get lots of good encouragement ((((BIG HUG)))). We all share stories so hears on that may help you......I have a friend she had breast cancer. She was stage lV and thought this was it for her. She went through the battle (chemo and radiation) she had a double mastectomy. She took an oral chemo for 5 years. She is cancer free now. Hang in there girl. Do the best you can do and be easy on yourself. Our lives are not sprints they are long distance races and we need to pace ourselves.
Jul 9, 2012 11:55 PM, edited Jul 9, 2012 11:57 PM by stagefree
me_4givn, thank you for such inspiring words. I have been "sentenced for death" by quite many members of my family & friends since diagnosis, other than that I felt fine up until now. My mom & hubby's mom being among those! Anyway, everyone treats me so good since they believe I am a "dead wo(man) walking" (one of my stage 4 sister's quote :) ), so I sort of let them pamper me all the time. Times like this show you the real ones who care and love you, which is not many. So I try to focus spending my time with them. You are so right that life is not a sprint, but a long distance race. I sprinted up till diagnosis, now trying to pace myself. Found out it is nice to wake up late, spend more time with my son (7), let other people do housework & now considering disability retirement since I own the business and it takes too much energy out of me.
Back then, I did not have any surgery for HL, no spleen removal or anything else. This time, since it is already stage 4 BC, not been offered any mastectomies, not even bone biopsies which I read is on these boards are qute common. I guess I am one of the few without having any major operation up till now. But my aunt did have double mastectomy. You sound just like her. She, too, got up quickly from her patient bed and continued her daily routine with housework, meeting with friends & family, which I admire so much. Since she was already a retired teacher, she opened her school which she runs with my cousin now!
Jul 10, 2012 11:05 AM kona14 wrote:
Hi everyone. Had HL in 1989 stage IIB treated with ABVD and 37 rad treatments. Had silicone breast implants put in above the muscle in 2009. Have mitral valve prolapse and SVT from chemo. Going in for a dbl. mx on friday the 13! Am scared to death. My question is did your surgeons find the same thing inside of you as the core biposy suggested? They believe I have a 1-1.5 c.m. tumor IDC and another area of ALH. I am scared that they will find more. Also, did your breast feel really weird after the core biopsy--swollen and bumpy? I have dense breast tissue, maybe thats why i am feeling so "weird." Am anxious to get the cancer out. I can "feel" it in me and have been doing a lot of metal visualization to hopefully slow it down. Depending if its in my lymph nodes or not will depend on if I need chemo or not. Tamox for 5 years post surgery. Also, am having a hard time with how my hubby will view me and my new breasts. Any comments or suggestions? Thanks.
Jul 10, 2012 02:34 PM DeborahC wrote:
Hi Kona, I had no surprises at surgery so hopefully you won't either. Yes my biopsy was sore for a long time (but BMX took care of that!). I was very scared too, but it was not as bad as I feared. I assume you are having reconstruction - your recovery will depend on what type. I still have my expanders. They are annoying and uncomfortable but I have grown accustomed to them and am now getting nervous for my exchange surgery in September.
For your recovery - get lots of pillows and button front shirts and one of those Mastectomy camisoles if you can. I found that the front zip Danskin sports bras (at Walmart) are the most comfortable and easy to put on. Good luck!
Jul 11, 2012 07:52 AM kona14 wrote:
Thanks for the advice. I am having immediate reconstruction with tissue expanders/silicone gel implants. Did you have yours filled yet? If so, did it hurt and are you pleased with the results so far? I see you are from Chicago. I am having my surgery at Rush University Medical Center. Lastly, did you need someone by your side in the hospital 24/7? Thanks!
Jul 11, 2012 08:14 AM DeborahC wrote:
Kona, Yes my expanders are now fully filled. The first several fills I did not feel at all. I only did 40 ccs per fill. Later they were sore - but no real pain. The skin will probably not have any feeling - so you will not feel the needle.
I am now used to the expanders. I think they look pretty good for temporaries. They are a little large and high (as they are overfilled) so hopefully the implants will be softer and lower.
I stayed one night in the hospital and did not need anyone there. You won't do much but lay in bed. You will just work on getting on some oral pain killers that work for you and getting out of bed and eating solid food (I had to do all that to get released). The pain will be from the muscles around your expanders. The incision does not hurt. Finding a comfortable sleeping position was my biggest challenge. I slept sitting up in the corner of my sofa for weeks.
I think lots of women in the Illinois thread go to Rush. I went to Michael Reese for my Hodgkin's surgeries back in 92 but just stayed at the local community hospital for this. I am also now on Tamoxifen (no problems on that so far).
Jul 11, 2012 12:53 PM me_4givn wrote:
Update: Drains removed and right side leaking......anyone have this issue? No signs of infection, still on abx. Filled with 60cc on each side. I took motrin and I was fine. I felt so much better after drains were pulled!
stagefree- I wish I was near you to really hug you and do things to make you laugh and smile (that always helps me). I do not know what the future here on earth holds for me. I know that after this, I don't have many options because I have used up most of the treatments. I know I will do everything I am able , while I am able. You are alive....live :) I am sure those close to you treating you like your gone are not sure what to do. They are scared too and have no idea what to do or how to voice it (they are out of control). Let them know what you need. Ex. "I need you to treat me like I am alive and not dead." "I know you are scared, so am I. When you do (X,Y,Z), I feel like you do not understand me. Let's talk about it so we both are not afraid and you understand me better." I know conversations like this have helped me. Just a thought ox! Keep seeking knowledge on how to fight.....get as many opinions as it takes for you to know you have the answer. Rest, relax, and take the disability girl!
kona14- Getting the cancer out is a good thing. It is completely understandable you are having fears about your hubby. I did too but, I let him be part of my healing. I helped him understand what I was dealing with by having him help me change dressings and helping me with things I could not do. We talk lot about the whole thing and I am open and honest with him about how I am feeling and I let him vent too. I think it helps! We started laughing about the strange shape my breast are with the TE's in. They look square (this will change after implants are in). I had my first fill yesterday and drains pulled out. They filled 60cc in each. It felt slightly tight with no real pain at all. Hang in there, thanks for sharing, and I hope your surgery goes well and keep us posted. You should check out the surgery sites for before, during and after. They are great :)
DeborahC-Right on about your experience. I sit in a recliner with pillows when I am resting. I had my BMX June 25. My TE are strange and I hear having the implants is so much more comfortable. I am looking forward to that! I am happy to hear your all filled up. Again, great tips!
I hope this helps, it helps me very much..."Therefore do not worry about tomorrow for tomorrow will worry about it's own things. Sufficient for the day is its own trouble"
One day at a time!
Jul 11, 2012 12:53 PM kona14 wrote:
Deborah, you have been a great comfort. I hope that I also will be able to help other women out when they are facing surgery. I will post after surgery, probably with even more questions! Thank you so much. I feel so much more at ease. I hope I do as well as you seem to be doing.
Jul 21, 2012 01:48 PM kona14 wrote:
Recovering well just so dang tired all of the time. Taking pain med only at night. Had terrible thrush from IV antibiotics. Otherwise, had two drains taken out yesterday. What a great feeling. Will have to have chemo b/c sentinel node was positive. Any advice on how to prepare for chemo? 22 years ago ABVD was pretty rough. This chemo any better? Also do they fill expanders while you are having chemo or wait until after? Thanks.
Jul 23, 2012 01:42 PM Fighter_34 wrote:
Kona14-Yes I had my fills in-btwn treatments. Fairly easy.
Chemo was doable as well and I was able to work the whole entire time. I was just a little slower than normal but I still maintained somehow.
Jul 25, 2012 09:31 AM DeborahC wrote:
Hi kona, I'm glad you are now recovering and are drain free (that is a good day). Sorry about the lymph node. I have no chemo experience to offer. When you start getting fills - just going slow was the best thing for me to minimize discomfort.
Jul 28, 2012 09:35 AM kona14 wrote:
Two weeks post surgery and I feel really good. Tissue expanders feel really tight still. Will this go away eventually? Still sleeping on a recliner b/c it is uncomfortable to lay semi-flat.
I used to have large breasts and feel really flat now (150 cc in expanders now). I went to Kohls and bought a super padded C cup bra. I wore this over my surgical bra with some Kleenex stuffed on both sides and I felt so much more comfortable going out to dinner. I don't care about my flat chest, but it is funny how others would react to my drastic physical change. To prevent their discomfort, the bra did the trick. My husband and I had a lot of laughs about my "funnel" kinda shaped breasts. It is funny how others have a harder time with our diagnosis than we do!
Fighter 34: Thanks for the chemo input. This makes me feel better that you actually worked while going through treatment. Way to go!
Jul 29, 2012 11:29 AM DeborahC wrote:
My TE's are better all the time - but they do still wake me up at night when I try to roll over. I bought some of these front zip Danskin sports bras at Walmart that are comfortable - and they hold their shape even when empty - so no need to stuff. I bought a C and they have worked thru all my expansions and hold the TE's in a comfortable position.
Jul 30, 2012 10:13 AM me_4givn wrote:
My surgery was in June and I am fully expanded now. I thought the TE were not to bad. I had them filled at 60-80 ml at a time. Low and slow is best for most women it seems. I had my chemo up front and can say, it was not to terrible. I was also able to work most of the time while taking my chemo treatment. I was really tired! I loved those sports bra's from danskin!! You might want to check out month specific surgical topics. I found them helpful.
It keeps getting better! Just a huge bummer having to go through this now too!
Sep 5, 2012 11:55 PM poeticrevolver wrote:
I have been reading this entire thread for the last hour or so, and wow, I did'nt realize so many women had the same issues as I. Or in the same order. It is so bizzare. Well, I first was diagnosed with Lyme disease in early 2010. Did 12 days of IV treatment, only to have an allergic reaction to the medication, and got much worse.
Then thymoma in April. (wait and see mode), then IDC in June 2010. Had lumpectomy on July 20, then a thymectomy to remove the thymoma, only to find out it was Hodgkin's Lymphoma, stage 2b. Chemo started in Dec. of 2010. Radiation, well , I could only do 7 actuall zaps. I thought I was going to die. The rad. oncologist said no more! "your body can't take any more". So, we stopped. Ever since I stopped chemo for the HL, I have been ill. Stuck in bed, have to use a wheelchair. My life has drastically changed.
After 2 HL scares, and one BC scare, (biopsy was benign), however MRI showed many spots on both breasts that were suspicious. So, I now sit here, with a "untreated" IDC, and I still question the HL being back. Both were so hard to find in the first place, I guess I just don't trust the scans so much after what I have been through.
I now have MS, Shojrens' syndrome, chronic Lyme Disease, paraneoplastic syndrome from the cancer(in which I am on daily methadone and fentenyl pops for pain relief) fibromyalgia, brain tumor growing(benign yet in a bad spot), osteopenia, arthritis, skin lesions, bleeding found on the brain(now MIA)lesions on brain(now MIA) severe bladder probs, kidney pain, urinary issues, uterine prolapsing, severe uterine pain, and lesions. Can only eat a piece of fruit per day, no joke. Literally one peach was almost too much for one day. Another day, about 1/4 cup oatmeal and a few grapes, and some oj. FULL to the max! I don't understand this. Now my liver is showing fatty liver disease, and hurts like he**.
Oh, my thyroid first developed hyperthyroidism, led to a five day hospital stay, this was this past April. now the bloodwork shows hypothyroidism, and I also can hardly swallow, have severe neck pain, and visible swelling in the thyroid area. My main onc. said "you have a goiter". I go see my endo. tommorow. I'm afraid it's cancer. I'm also afraid cancer is in the liver. Especially with all this pain and inability to eat. Also I'm bloated, and have abdominal pain constantly. Afraid the uterus is involved as well. Last week saw my regular gyn, he said go to the cancer center where you had your previous surgeries and have a full hysterectomy asap. "I'm afraid to do it, he said, i'm concerned that afterward, we will have a disaster on our hands Jen." I cried.
There is still the Bc symptoms I'm having that I am very concerned about, and am being told I need a double mastectomy asap. by four dif. doctors. I see the plastic surgeon with the cancer center I go to, to get more information , to help me and my husband make a decision. Do I really need to go through all of this?
Do I really need to loose my breast, and all of my female organs? On top of that, possibly the thyroid and liver issues??
I so had hoped the chemo was the end of this cancer in my life. Now it just seems like it was a phase, now what??
I feel so confused, yet reading all of your stories, feel a little bit more educated and at ease.
Thank you for listening.
God bless all of you warriors!! Keep fighting and never give up! I'm trying my best to fight this everyday. I have three beautiful kids who need me, and my loving husband who has been amazing throughout this whole journey. I must get well!!
Sep 7, 2012 03:55 PM me_4givn wrote:
My heart breaks for you! We have all had a really hard time of it! Warrior is a great term becuase cancer has been a life long battle for most of us here. I can not tell you what to do. If you have read all the threads you may have seen mine. I too have a wonderful, amazing, patient, and loving husband. He has been in the trenches with me the whole time! Cancer has taken lots from me (and most of us)! I no longer have the following: spleen, 27 lymph nodes, my thyroid, joint's are shot, no girl parts (reproductive), my breasts, time from my family, lots of money and I have a small world map in scars all over (LOL). Now let me tell you what really counts: Cancer can NEVER take from me. The deep love I have for my family and the Lord ,My soul, My education, the beauty I find everyday in something (sunsets, birds, the breeze, family pictures), memories, and so very very much more. I have so much to get me through this disease. I do get down and I'm not always on top of it (lately its been harder) but do what you must do dear Jen to live in the now :)
I would like to share a couple of things to encourage you.
Get all the information you need to make an educated choice.
Find out if you do have cancer (liver, female parts ect) with the necessary diagnostic tests and than make your plan of attack (if doc's are says hurry then get what you need now) I know its scary, believe me it is! But how do you battle the unknown?
Take one day at a time. There is enough "stuff" in a day when you are in a battle and my dear you are in the trenches!
Take care not only of your body but your mind and soul (they are just as important!!) Prayer, counsel, medication, and funny movies ect.
Talk, Talk, and talk some more to who ever will listen (we do :) Get it all out.
Whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. Philippians 4:8
Big Big hug!
Jan 22, 2013 06:59 AM, edited Jan 22, 2013 07:01 AM by Traii
Hoping you can help, been a while since anyones posted on this thread, hoping thats because you are all well :)
I've got two more rounds of chemo left :)
I met with the plastic surgeon today and she said that I can have a BMX with implants (don't need expanders) and she said that there is a 50/50 chance that it will or won't work because of the radiated breasts. ( but I really want this one as its a less intense procedure too and looks good )
I was considering TRAM I think it is (from my tummy ) but the procedure is around 14 hours I'm told and the recovery is about 6 weeks.
I have a very active 3 year old so my chances of 'taking it easy' even though I have my parents and hubby to help makes it hard as my DS is a 'mummys boy'!
Just really looking at your input on what your procedure was, how it went and how you are going now ?
Would love to hear from any of you out there please fellow HL warriors and BC warriors !
Jan 22, 2013 09:37 AM michellehb wrote:
Hello Traii, Only 2 treatments to go, hang in there! I had mantle radiation at 13 (no chemo). We planned the expanders and implant route from the beginning. I participated in a trial that added Avastin to the standard ACT protocol which impacts your ability to heal. I don't know exactly what the cause but I was rejecting the expander on my right side (the cancer side). My initial surgical wound would not heal. My PS just did a quick swap before I had a chance to expand, and cleaned up the initial incision, and everything healed just fine. The TRAM was my backup. By comparison the PS surgeries were a walk in the park compared to the initial mastectomy. Just my 2 cents, but I think you wouldn't have anything to lose by giving it a try. Another thought would be to get a 2nd opinion. There are a lot of ways to approach the reconstruction, and no right answer. Take your time to decide what's best for you. Wishing you all the best.
Jan 22, 2013 01:01 PM Jennt28 wrote:
I had a BMX with immediate free TRAM recon after chemo and my 12 days of radiation (quit when I discovered the risks since my cancer was likely caused by excess radiation as an adolescent).
Surhery was 12hrs long. Stay in hospital was 9 days. Then I was back working from home in week 3 and back at my full-time job in week 4. My kids are older but I was back to normal house stuff within a couple of weeks!
Jan 22, 2013 01:02 PM Jennt28 wrote:
I had a BMX with immediate free TRAM recon after chemo and my 12 days of radiation (quit when I discovered the risks since my cancer was likely caused by excess radiation as an adolescent).
Surgery was 12hrs long. Stay in hospital was 9 days. Then I was back working from home in week 3 and back at my full-time job in week 4. My kids are older but I was back to normal house stuff within a couple of weeks!