BC Dx and Hodgkin's Disease Radiation Treatment

michellek

wow...i can relate!  I forgot about the neurologist that told me  i also had peripheral neuropathy. he thinks that's what all of the head pain is from. What's ironic, is that i also refer to  times of my life as bc (before cancer).  i've almost given up trying to find relief. i think that the drs. think i'm a whiner or a hypocondriac,,but i know what i'm talking about! i have to keep reminding them about the radiation, and my lack of a spleen. A lot of them just simply disregard it and tell me it doesn't have anything to do with all of my problems.  Really,  you all have no idea what mental boost this has been to me to find all of you.   I've NEVER communicated with anyone before who is also going thru this.  I wish none of us had this in common, but since we do, I'm glad to have found you. I should print this the next time i go to the dr. and show them that i'm not the only one and i'm not crazy. I'm from Ohio, is anyone else from my area?

Ippuni

 Hello everyone!

re vaccines:  I try to get a flu shot every year.  And it is important to have a pneumococcal (pneumonia) vaccine if your spleen was removed.  I never had chicken pox so I had myself vaccinated at the same time as my daughter - hopefully this will prevent shingles for me.

michellek:  We are all hoping your biopsy proves benign.  We are thinking of you! 

I started arimidex on Oct 1st - anyone else here on it?  I'm starting to wonder if I'm mildly allergic - my skin is itchy - otherwise seems to be going ok.

TennesseeMichele

Meg,

Thanks for letting me know about your vaccines.  I always wonder what I should get each year, and my docs never help either.   I'm on Arimidex; it's been almost a year.  The only side effects that I noticed were joint pain (esp. knees) but now I take Glucosomine/Chondroitin (sp?) and don't have much of a problem anymore.  Oh, and my hair is thinner. 

 Michele

Ippuni

Michele -  Thanks for the arimidex info.  Joint pain hasn't been too bad for me so far but I might try the glucosamine/chondroitin for my right knee and ankle (broke my leg last Feb and still have stiffness and mild pain from the surgery).  I'm hoping my hair is going to to get a little thicker!  I'm coming up on 2 mos post chemo and have little to no hair so far!  btw, you won't need the pneumococcal vaccine every year - I think just one lasts for years.

 OK, now it is time for true confessions.  I am HORRIBLE about exercising.  I know I should be at least walking every day but I have the hardest time getting my butt off the couch.  I have so little energy.  It's been almost 2 mos since my last TC treatment.  Anybody else devoid of energy post-chemo?  Did it get better?  If yes, when?  OK, going to force myself to walk now...

missde3

I refused to take Tamoxifen due to the side effects.  Arimidex is also an anti-extrogen.  One of the side effects is itching which indicates a hormone imbalance.  My friend is on Tam and had such severe itching in the vaginal area that the docs did a biopsy but it's hormonal.

The Pneumovax (sp?), I was told, was needed every 10 years since I don't have a spleen.  It seems every doc is different with their opinions.

Ipunni:  I try to exercise at least 3x a week.  Don't always get there due to the fatigue and fibromyalgia.  I use Richard Simmons DVDs because they're easy to learn and you do sweat.  I really HATE sweating but I know I need to do it!

missde3

oh - I'm NY.  Not in Ohio.  I haven't found anyone near me.

Pamelajo

Guess I belong in this group as well.  Hodgkins when I was 17, now BC 22 yrs later. 

I hate cancer.

With research since dx, I've found that receiving the toasting radiation as a teen also increases our chances of having small ischemic strokes.  I had two at age 34. 

I've been told by my Onc that they are considering stopping my chemo due to horrible side effects.  She seems to think my body cannot tolerate anymore treatment at this point because of the previous treatment for HD.

I'm so glad kids today don't have to go through what we did back then.

missde3

It seems that 15-20 years is the magic number for BC to show up.  I talk to other women who have been Dx with BC and I feel like they don't understand the impact of having another DX of a different type of cancer caused by the treatments for the first one.  Does anyone else feel this?  I'm 21 years post HL.

Pamelajo:  I hate cancer, too.  I'm so sorry your body is going thru so much.  I, too, opted for a BLM and in my non-cancerous breast, there were 6 things noted.  Five out of 6 were pre-cancerous.  I didn't have any chemo with either cancer.  I've been lucky in that sense.  Good luck!

Denise

Jen2

Hi everyone, It's been a while, I was last on after my BLM and waiting on chemo. I ended up having 4 rounds of TC over the summer. It sucked! My husband and my sister were by my side for all of it. After the treatments I was thinking life would go back to normal, but I am beginning to realize there is no normal anymore! Since chemo I had a thyroid biopsy that was ok. I started Tamoxifen about 4 weeks ago, so far so good. Now I had a vaginal sonogram and they want to do a biopsy in 2 weeks because next week I am having my surgery to transfer the expanders for implants. Then yesterday my onc said CT showed something small right center chest and back right in the field of the mantle radiation. Wants a pet-scan in 8 weeks. I thougt I was doing ok and trying to move on but now I feel depressed and scared. My kids have been handeling this ok because for some reason when it comes to them I am strong but inside I am a mess.

Jen2

Hi everyone, It's been a while, I was last on after my BLM and waiting on chemo. I ended up having 4 rounds of TC over the summer. It sucked! My husband and my sister were by my side for all of it. After the treatments I was thinking life would go back to normal, but I am beginning to realize there is no normal anymore! Since chemo I had a thyroid biopsy that was ok. I started Tamoxifen about 4 weeks ago, so far so good. Now I had a vaginal sonogram and they want to do a biopsy in 2 weeks because next week I am having my surgery to transfer the expanders for implants. Then yesterday my onc said CT showed something small right center chest and back right in the field of the mantle radiation. Wants a pet-scan in 8 weeks. I thougt I was doing ok and trying to move on but now I feel depressed and scared. My kids have been handeling this ok because for some reason when it comes to them I am strong but inside I am a mess.

missde3

Prayers and hugs to you and your family!!!

cher26bear

Hi there!! I had Hodgkin's disease when I was 17/18 with radiation treatment. I am now 35. I immediately got an under active thyroid and last year my mammogram showed spots. The ladies doing it mammogram thought I had cancer...two biopsies were done and it showed no cancer...just some effects from radiation most likely. It is now a year later...still have the lumps plus and getting really nervous again. I am looking it to preventative surgery where they take my breasts now and reconstruct. I am hearing too many of us getting breast cancer.....any info would be greatly appreciated....

cher26bear

Hoping all went well with you!! I am in the same boat at you in regards to the lumps in the breasts. I had two biopsy's last year...they were clear..they don't really understand what is going on...I now have more..I am going in Wednesday to my doctor to see if I get do preventative breast surgery.......

Pamelajo

If you have had Hodgkins and you now have lumps that Drs say are "nothing"..... get a second opinion! 

All my research says that we adults who took treatment for Hodgkins Lymphoma over 20 years ago are showing high rates of BC, for both men and women.  The fried us. 

If you don't feel good about those lumps, go with your gut.  Boobs are not worth risking your life.

michellehb

Has anyone gotten rads to chest wall for BC after getting mantle radiation for HD? I'm told I'm in the gray area (2 positiive nodes) so tumor board is reviewing.

missde3

I was told that I could NOT have more rads.  The option for me was a mastectomy and I chose bi-lateral.  Good thing, too, since there were pre-cancerous stuff going on in the other one.  As for you, you have + lymph nodes.  I didn't.  Our cases are different in that respect. My case also went to the tumor board.  There aren't many of us out there.  I don't think anyone quite knows how to deal with us.  Did you have a mastectomy or lumpectomy?  Chemo, I guess?

michellehb

I opted for double mastectomy also. I was told lumpectomy not an option, as rads would be mandatory, and no more for me. Positive nodes changes things, however. They can limit radiation to chest wall which there is data to support is safe. They won't re-radiate the nodes, though, due to the nerve damage it causes. I'm again on the fence about a treatment choice. Something to ponder this week. If anyone else has had experience with this, would be great to hear.

Pamelajo

First I was told no more radiation, then I was told 4 treatments of taxotere/cytoxan and 6 wks of radiation to the underarm area.  I had two positive nodes.

I thought about it long and hard, and brought it up to my Onc, and she said she supported me in my decision not to have more radiation.  She said I was in a grey area and there was no concrete proof to say that more radiation would help me. 

so.  I'm not having radiation.  Thats what caused this mess in the first place.  Why do more damage when there is no detectable cancer anywhere.......and I took chemo

michellehb

I'm leaning toward the same. My body is saying enough is enough already. I've had so many SE's from the chemo (4 AC + 4 T, and 7 doses of Avastin on a trial before I bailed). Being in this grey area, I have to think I could be causing more harm than good. Thanks for giving your perspective, I feel better

mimi1964

Hi All,

I was dx with Hodgkin's Disease when I was 16 back in 1980 and took 8 txts of chemo, but I never had any rads.  I was in remission/cancer free for 27 yrs. On October 22, 2009 I was dx with IDC/DCIS stage T1A breast cancer.  I have been trying to find information to see if my Hodgkins or chemo had anything to do with my breast cancer.  Any information anyone can give me would be helpful.  Thanks

TennesseeMichele

Renee, I'm glad to meet you (although I wish it wasn't because of bc) because you're the first person I've met that didn't receive radiation for their HD.  I  had MOPP/ABVD chemo in 1991 at age 21.  My oncs said at the time that they didn't think radiation was necessary for me - I was stage IIb with that cancer just like the bc.  With this cancer I chose a lumpectomy, with T/C and radiation.

Other than rads, I haven't read about anything that relates the two cancers to each other.  However, nearly every woman I've met/read about that had HD has ended up with bc, so I personally think there has got to be a connection.

Hope everyone is looking forward to the weekend!

Michele

TennesseeMichele

Does anybody know if Tracy Nelson (the actress) was ever diagnosed with bc?  She had HD back in the late 80's.

Michele

mimi1964

Hi TenesseeMichelle,

I had my treatment for HD at UAB Medical Center in Birmingham Alabama, it was stage 3 I think that's why I had to have chemo and no rads.  I do know it wasn't in my spleen however.  My mom did all the decision making for my treatment with the head of Oncology at the time.  Since they are a learning and teaching and research hospital they have a lot of the newest advancements in treatment then and now.  However, I am not using them this time as they do not accept the type of insurance I have which is a shame.  

I also chose a lumpectomy with my BC.  I initially wanted to do a mastectomy because of fear but changed my mind after my biopsy report came back.  I to have done some research (a little) and have read about some people that have had HD and many of them have ended up with other kinds of cancers, many of them BC, whether they had chemo or rads, so I like you don't think it has anything to do with the chemo or rads I believe it completely has to do with the HD itself.  There definitely should be more research on it.

Have a great weekend!

missde3

If you have mantle radiation, it ups your odds of BC by a huge amount and it's almost expected that you get breast cancer.  If you didn't have rads but had chemo and it put you into early menopause and you took hormone replacement therapy, that might be a contributing factor.  If none of the above, I believe that when you get cancer of the lymphatic system, something isn't working well enough to fight it off since the body parts meant to heal are what's sick.  To me, it seems to set you up for an internal fight.  Maybe a higher risk for other cancers or coincidence?  My son was also DX with HL at age 18 with chemo only.  I had rads only.  He's now 34 and so far so good.  !6 years for him - 21 for me.  Anybody else have a relative with HL?

mimi1964

This is a question that I have had in my mind lately and maybe someone on this board can answer it based on their experience.  Did the fact that you had a previous history of HD effect your treatment course for your breast cancer?  I mean did it make the Oncologist take a more aggressive form of treatment than he might have taken.  Like I am a a PT1a DCIS/IDC (well you can see my Dx below) and I was wondering if the fact that I have a history of HD would change the outcome of my treatment plan.  I think for stage 1 it is usually rads and tamoxifen or arimidex or something similar (since I am post menopuasal for 7 1/2 yrs..  Thanks

7timewinner

Wow! I've been away awhile and s many new faces! Hello to all the newbies, so sorry you are here for the reasons you are here, but welcome nonetheless!

I had mantle rads for my HD when I was 14. For my BC, I had no choice but to have chemo and addiional rads, despite the fact that I had rads for HD. I had 15 out of 17 nodes involved, even though my tumor was only 2cm. My body handled the radiation for BC very well. Even though my skin is quite fair, I never burned or blistered. I kept it moisturized at all times with California Baby Calendula Cream. Not trying to sell anyone on the product, but let's just say the radiation doctor and techs were all very surprised when I had no major skin reactions, and when I told them that I never used the cream they gave me

So despite having rads for HD 25 years ago, my radiation onc assured me that the type of radiation used for BC today is VERY different and is not likely to have any long-term impact like the rads for HD decades ago. I chose to believe him but honestly, there was no choice for me, I had to hit my BC with everything available. I suppose time will tell.

I had a lumpectomy, chemo, and rads. Stage IIb-III tumor and lots of nodes involved. Only rads with HD, no chemo.

There are some standard protocols followed, but every case is different 

Nadine

missde3

I agree. Every case is different.  Since I was lymph node-, my treatment plan was different.  After the BLM, I was told that I didn't need chemo since there were no tumors but had three little specs of IDC within the DCIS.  It was recommended that I go on Tamoxifen which I refuse to take.  But, that's me.  Get all the info, digest it, ask questions and make your choices that are right for you.

Hi Nadine!  Glad you're back!  How are you doing?

Denise

Pamelajo

I'm totally confused now LOL

I had HD at 17, stage 4, not in bone marrow though.  I had chemo and full body rads.  Spleenectomy.  22 yrs later I have stage 2 bc with 2 of 20 nodes positive.  I was told if I had 3 or 4 nodes positive I'd be stage 3.......my biggest tumor was just slightly over 1 cm, and it was not in the muscle or skin.

My oncologist, surgeon, radiologist and every other doctor I've seen have said that my bc is caused by the radiation I took as a teen.  Because my breasts were still developing, the radiation was damaging to the tissue.  They said nothing about the chemo causing my BC. 

My onc had to have a huge medical meeting with all the other oncs to figure out a game plan for my treatment.  They opted to go at it aggressively, and I was all for it till I calmed down and thought about it.  My body couldn't handle the chemo.......liver shut down, neuropathy after only two treatments, and I chose not to have anymore radiation.  If radiation caused this, I'll be darned if I take anymore.  Once I voiced my concerns, my Onc told me that my treatment was only precautionary since I had a bilateral mastectomy and only two of twenty nodes were positive, so she couldn't argue with me about my decision.  I was in a grey area.  No proof the treatment would help and more suggesting it was doing harm.

Who knows the reason.  I just know this sucks big time.  Hopefully 22 years from now I won't find myself back in this boat suffering from some other cancer because of the breast cancer treatment.

olivieri

Hello eveyone!

I am from Canada and I also had Hodgkins disease back in 1997 Stage 2. I was 38 years old at the time and I received chemo and radiation to the chest.  I can't believe that I am going through this again after 13 years.  I was just diagnosed with BC last September.  So I guess at 51 years old I am the oldest one here.   During a routine mamogram a suspicious spot was detected and I had a biopsy which came back malignant.  I just had a lumpectomy and am still  waiting for the final pathology report .  I am so overwhelmed right now and confused about what my options for treatment will be.  I am very grateful that I found this post and found hope in all you ladies.

missde3

olivieri:  I just turned 50 and had HL at age 28 in 1988.  All of us here are reeling from a new cancer diagnosis after already doing 'our time' in the cancer department.  Don't make any quick decisions.  Hear it all (I listened thru the tears), take notes, research, ask a lot of questions then make your decision.  You have time.

Pamelajo:   ugh - I know agressive treatment is good but with already having gone thru this, our bodies need a little TLC.. I opted not to take the tamoxifen because of the side effects.  Especially the one of uterine cancer.  I said to the onc - obviously me body likes to make cancer so why wpuld I do that?  She agrees with me 80% but I'll take that 80 %  Saw the breast surgeon yeaterday.  He agrees that I don't need anything else since I had the BLM.  So, that's where I am but it's been a 6 month decision.  Am looking into bio-identical progesterone.They said my chance of recurrence is less than 5% and Tam would only knock off half - not good enough to take another chemical.

Good luck ladies!