Hodgkins Lymphoma and BC

TennesseeMichele

Hodgkins Lymphoma and BC

TennesseeMichele

I'm wondering if there's anyone out here that has a history of Hodgkin's lymphoma.  I was diagnosed stage IIIb HL in 1991 at age 21, had splenectomy, then 7 months of chemo (ABVD/MOPP).  No radiation.

Now in Feb. 2008 have BC.  I knew there was a risk of BC with  radiation as treatment for HL, but since I didn't have that treatment I wasn't too concerned.  Just thankful that my surgeon contacted and urged me to start having mammograms just in case.

I'd like to hear if anyone else has the same history, or a history of two different cancers.

kerry32

Michele,

I am a simliar case as yours - diagnosed with Hodgkins in 1992 at the age of 36 which was considered the high end of age for that disease.  I had 6 mo of chemo and 4 weeks of radiation and now have ILC.  I was told in July by my oncologist that the radiation could mean a threat for breast cancer then in Jan it was picked up on a annual digital mamogram.  I opted for bilateral since i couldn't have radiation again and the turmor was found to be 90% insitu so i was glad about that.  I too am er/pr+ and her 2-.  Crazy huh?  I hope all goes well for you.  

TennesseeMichele

kerry32;

What kind of chemo did you get for Hodgkins?  You said you were told by your oncologist about the risk for bc; were you still seeing him from Hodgkin's days?  Just curious.  I've never met anybody else that had Hodgkin's.

Michele

kerry32

To tell the truth I don't recall the exact combination of drugs but I believe ABVD sounds familiar and I think the standard MOPP was just being modified.  I do remember adrimyicin which would have been the A.  Sorry about that.  Yes, I was still seeing my oncologist once a year for check up.  That was the first time he told me that he wanted me to have a breast exam by him at appt in July then go to gyno in Jan for my annual so i could see two docs a year for breast check up.  We even talked about MRI but since there are alot of false positives with that we decided on this plan and the annual mamogram. 

susan_CNY

I have had cervical, colon and breast cancers, bc being the most recent. Sounds like you have a good doc keeping you aware, best of luck to you, this is a great site, glad you found it.

mommomjuju

I am a 30 year survivor of Hodgins Disease.  I received radiation to the chest.  I was diagnosed with BC May 14, 08, had a mastectomy and will start chemo 8/5/08.

TennesseeMichele

Wow - 30 years!  Good luck with chemo; I'm just finishing up and beginning to grow hair again!

Michele

TennesseeMichele

Susan,

I don't know how I missed that you have had 3 cancers.  Both my onc and my surgeon are concerned that I may be heading toward more cancers after this one.  I hate to go in for visits with them because then I start worrying too.  Glad to hear of your successes!

Michele

jgreve

I'm so happy to have found this thread!  I've been looking for other women who have bc as the result of chest radiation for Hodgkins.  I had mantle radiation for Hodgkins 24 years ago, when I was 25, and now I have bc.  Several doctors have mentioned how "bad" mantle radiation was, giving people breast cancer and heart trouble, though it seems to have been standard treatment at the time.  I didn't have chemo then because my Hodgkins was in an early stage. 

I had my mastectomy a week and a half ago, and will start chemo in another week or so.  Now the doctors are debating whether or not I should have radiation again, though they generally want to avoid it, since I've already had so much radiation.  It's confusing!  I'm wondering if more radiation will increase my chances for cancer in the other breast (which I opted to keep) or for some other cancer.

Anyway--great to find you all, and I hope some people are still reading this thread!  Best wishes to all of you,

Janis

      

jgreve

Also, I'm wondering how many of you with a Hodgkins past feel that you were looked after well enough by your doctors in terms of the breast cancer risk.  I kind of feel that my doctors dropped the ball and they should have been more on the alert, perhaps catching this in the "in situ" stage rather than the full-blown cancer it is now.  I've had several doctors since then (24 years ago) and I do remember one taking the risk more seriously, and she looked into whether I should be taking tamoxifin as a preventive--she decided against it for someone reason (I can't recall.)  But since then, my primary care only had me getting yearly mammograms, and the cancer didn't show up on those because I have lobular carcinmoa (which shows up mainly on MRI's). 

So, just wondering if you feel your follow-up care re: heightened bc risk was good.

 Janis 

TennesseeMichele

Janis,

I'd like to know what your doctors decide about more radiation.  Let me know when you find out, ok?

 None of my doctors mentioned preventative care to me, except my surgeon from HL days who contacted me to start getting mamograms.

 Michele

hiddenstar1107

Hello, I was diagnosed with Hodgkins Lymphoma Jan 2005 it was caught early I was Stage IIA.   I underwent chemo (ABVD) and radiation.  I have redness on both my breasts with like white small circles, anyways, I wasnt too concerned, but I had a pap today and when the gynocologist checked my breasts she found a lump on my right breast that I had missed.  She told me to get a mammogram on the right breast, but when I went to schedule the appointment the doc there wanted to do it on both. I guess b/c of my history?  I hope it turns out to be nothing.  2010 I will officially be considerd a Hodgkins survivor.  Keep me in your prayers.  Thanks. 

TennesseeMichele

Hiddenstar,

It's good that your doctor wants to do a mammo on both sides.  It's not much fun thinking the treatment of one cancer may cause another, is it?

Congratulations on coming through Hodgkins Lymphoma!

Michele

mommomjuju

I finished chemo in October and started Herceptin only.  I had two treatments of that and had to stop due to low MUGA scans.  I had 2 low EF's and am seeing cardiologist today.  I was told that some of this problem is probably due to past radiation tx.  I also decided not to have radiation but to have mastectomy.  I was also told that the bc was not caused by the radiation because it have been located in a different area.  I too am interested in hearing more from others with this dx.

Anonymous

Hello Ladies

I have not had Hodgkin's lymphoma, but my son has. I wondering if there is a conncection. I tested positive for BRAC but was not informed of the results until after I was DX with BC, a YEAR later.

My son was on chemo for 3 months at a time then off for 3 (might have been 4 months), then back on  and off. He did this for 18-24 months. I believe his Onc called it "maintance" after the first 2 or 3 "sets". The first few chemos, caused all of his hair to fall out. Then the cocktail was changed and he never lost his hair again. 

I know "the" gene can be passed to male children but I wonder if it can cause other types of cancer.

joroja1

I have just returned to this site to research some questions on reconstruction and found my way here.  I am presently a 4 year survivor of bc stage II.  Had a bilateral mastectomy with diep flap reconstruction, which was a failure on 1 breast and then followed up with expander on the failed side.  I was originally diagnosed with stage I Hodgkins Disease at the age of 18 and bc 30 years later.  I was treated for the Hodgkins with Cobalt? radiation (no longer used), and have been told and have also read, by my oncologist that there is a direct coorelation between secondary cancers occurring from childhood treatment with radiation.  Unfortunately something that cured 1 cancer created another but as I try to look at it that something gave me 30 years and I'll gladly take another 30.  Good luck and bless you all. 

Anonymous

Thank you for your answer. My son has been fighting HL for over 3 years. He has had so much chemo I am surprised he didn't give up. He also had a lot of rads, over 40 I believe. He was told the chemo may cause him heard trouble or lukemia, and the rads, so other form of cancer. But like you he said, if this gives him another 5 years, they may have a cure by then so it would be worth it all. 

I wish you all the health and a very long life with no more cancer, Jean 

Kiki1965

Hi,

I had IIIb Hodgkins in 1991 - 9 months of ABVD therapy, no radiation.  

I was just told I have ILC & LCIS.  I'm going in tomorrow to find out more.  

katonine

I had Hodgkin's in 1993-94 at the age of 24.  I was diagnosed with BC in 2009, had bilateral MX in 2010. and just had breast recon surgery with implants. still in a lot of pain. would love to hear from other Hodgkin's survivors who had breast reconstruction.

mollyinco

i had hodgkins 18 years ago, had ABVD plus mantle and upper abdomen radiation, then in April 2010 was diagnosed with stage 2b breast cancer, had a BMX with immediate reconstruction, finished 6 rounds of TC in october, no rads for the BC due to the mantle rads

hadnt seen an oncologist for at least a decade and none of my drs seemed to know that i was at higher risk for BC because of the rads (even though they all knew my history) it was frustrating to hear all the drs tell me once is was diagnosed with BC that it was typical for them to see hodgkins patients come back in about 15  years after treatment with BC, wish my radiologist had known my risk was so high, maybe he would have thought twice before telling em we could just watch this lump....cause that lump ended up being cancerous

 now i'm well informed, and have built a team of specialists to help keep an eye on my health, i plan on living a long, long time:)

kerry32

I am thinking of going for reconstruction after 3 years out from bilateral MX.  I had chemo and full mantle rads in 92.  Anyone out there with similar history that wants to share I'd love to hear. I am seeing the doctor in 2 weeks for consultation

Maisymae

I had Hodgkins when I was 23 and now have breast cancer at 44. I'm extremely depressed and very worried about having a bilateral mastectomy and reconstruction. I had MOP HB/VD six rounds and radiation. I've just had my fourth and final chemo Taxotere and Cytoxene for the breast cancer. Stage 2 grade 3 triple negative. I tested negative for BRAC. I don't want a mastectomy but lumpectomy and radiation isn't an option. I'm worried that the reconstruction is going to be very difficult. 

Rosie24355

Maisymae, I'm so sorry you have to be here and have to deal with all this.  I had Hodgkins in 1979 when I was 25, stage 1A.  I had upper mantle radiation that someone above talked about.  I had no "late effect radiation" until 2005 when I had sudden heart block.  After an emergency pacemaker we found a few months later I also had atrial fibrilation.  That was my first signs of radiation effects.  Because of the afib they wanted to do a biventricular pacemaker/ICD but due to changing insurance, changing drs and going through the red tape, it took 14 months before I got the pacemaker.  About halfway through that time I got CHF.  But after getting the new pacemaker/ICD I have continued to feel great!  Can't climb mountains anymore but that's ok.  As my siggy says I had a single mastectomy last January.  Chemo of Cytoxin/Taxotere was finished last May.  I had the reconstruction implants in Sept and the nipple a month ago.  Things are looking great and I'm feeling wonderful again. 

With all that said...like you, lumpectomy and radiation wasn't an option as the surgeon had hoped.  My MO even sent me to a RO to make sure I couldn't have radiation.  The RO is the one who gave me the term "late effect radiation" that I've learned a lot from googling. 

I'm sorry you are depressed.  That's a normal and natural reaction.  When I first was dx I just about talked myself out of the mastectomy.  My wonderful husband of 38 years told me about a man he once met whose wife had a stroke and was bedridden.  The man loved his wife so much and spent his days taking care of her and treated her as the most precious thing he had.  My husband said to me, " I want to be with you even if you are just a head".  I thought, ok, it's not just about me here.  A year later I'm glad I went through the mastectomy, chemo and reconstruction. 

We are all different here but I know you will make the right decision for you.

michellej1980

Maisymae - I had a mastectomy with DIEP flap reconstruction in September. Although it wasn't the nicest thing I've ever experienced, it was a lot easier than I had anticipated. Once I had made my mind up that I wanted both breasts removed and what type of recon I wanted I felt much better. The surgery went well and although I was very uncomfortable for the first few days I recovered really well too. 

It seems so unfair that we should have to go through cancer again but in some ways it makes it easier. People have commented on how well I've dealt with the diagnosis and the idea of chemo but it's because a) the BC wasn't such a huge surprise to me and b) I wasnt as afraid of chemo as someone who'd never had it before. I'm having my 5th of 6 chemos on Friday.

have you spoken to a plastic surgeon yet? I think once you have a plan and understand your options better you will feel more in control and less anxious. Please keep us posted.

Maisymae

Thank you both for replying.  I'm big breasted and right now both my breast are killing me, especially the one with cancer. I'm a DD and with 800cc I'll be a C which should be a relief. I'll have a bilateral mastectomy on Tuesday March 5th- just a few days from now. I'll have the expanders put in at the same time, I've heard nothing good about those- ugh. I do have very good support, my husband is great, we have four kids - three sons 15,13,12 and one daughter 7, and our family is far. My parents will travel to be with us for a week to help out following the mastectomy. I'm dreading the pain and discomfort. When I first got sick in October we did by a new bed that with an adjustable base and that's been great during the chemo. I finished 4 rounds of chemo 6 weeks ago. I'm just so over this and ready to get the show on the road. My 7 year old girl wants me to be back to my old self and I've told her hopefully by Summer. I figure 3-4 months with the expanders then the implants in June. 

I also found out recently that I have Hasimotos, I'm sure this is also due to the radiation I had 20 years ago for Hodgkins. I'll have my thyroid out as soon as I'm finishe with the 2nd surgery for reconstruction and recovered from that surgery. I also hope to have the nipple and tattoo part done when they say I can. 

So, that's what's happening. I still am crying, often, about what is coming up. I have no option I have a 3.7 cancerous tumor in my left breast that's shrunk to 1.6, mastectomy only option and since my breast are so big I plan to take them both off and reconstruct. 

Any advice on what to expect after surgery and how to prepare would be appreciated. Today I found this website and it's been helpful, although the first time I tried to read it I felt faint. http://www.myselftogetheragain.org/the-story/after-the-mastectomy

Traii

Hi ladies,

I had HD back in 1996 at the age of 18....dx'd on my 18 th B'day after 3 months of waiting for results to come back as I had doctors baffled. I had MOPP, ABVD CHOPP and Stem Cell Transplant then radiation ( mantle) .

I'm here due to radiation like majority of you are.

I am going in for a reconstruction in May. About to finish my final part of the CMF Cycle. Its been a hell of a roller coaster and I'm sure all you girls know what that's like. I have an active 3 year old son that has kept me busy so the last 6 months has just flown by since I was dx'd.  My regime was 3x taxotere and 3 x CMF no radiation ( though the radiologist said that I was able to have again despite already being radiated in the armpit area. he could see that I had been radiated there as I've had no hair grow back and indents there!!)

Maisy, I'm a DD too....going to go down sized in the boobie dept...( will feel very different but not minding the 'breast reduction' idea ). I was told that the skin may not heal properly because we have been radiated in the chest area. I've already had a lumpectomy as I just wanted the cancer out of me...but always knew I had to have a BMX down the track). I'm just wondering, my PS told me that I didn't have to have the expanders in because I was not wanting to enlarge my breasts and that there would be excess skin after wanting to 'down size' also stretcing the skin may make it not heal properly. Did your surgeon speak to you about why you need the expanders? (don't want to add more stress on you but its a thought to ask if you need to really have the expanders put in), my reconstruction is going to be done all in the one day and no need (fingers crossed all works well) to go back to have expanders filled .

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

Maisymae

I'm wondering why I need the expanders, too, especially after seen the plastic surgeon's markings today for the breast surgeon. Tomorrow is my mastectomy and expander surgery. I also have to have the dye to check the sentinel node- which will come out. I'm just dreading the pain. I hope it's not as bad as I anticipate. 

Thanks for starting the fb group. I requested to join. 

Traii

Hi Maisy,

Did you mention to the Plastic  Surgeon as to why expanders will be necessary if you don't want to stretch the skin?

I can't tell you what it's going to feel like as I'm yet to go through it all...I just opted for the lumpectomy and then going to have BMX in May at this stage. I know when I had the lumpectomy and the sentinel node biopsy ( then as I had 2 positive nodes ) went back into surgery a week later for the Axillary Node removal. I had no pain. Just the drains were a pain in the butt!

Good luck for tomorrow. Will be thinking of you.

Rosie24355

Maiseymae,

Hope to hear from you soon how it all went.  Hoping it was easier than expected.