Breast cancer after radiation for Hodgkins disease

cher26bear

Just wondering if anyone knows if we are high risk for breast cancer. Every website that I go to always excludes anyone that has had radiation from Hodgkins disease. Always states to talk to you doctor. My doctor is good...but she has no clue in regards to this. I am going to see a breast cancer specialist next year....wondering if anyone has already talked to a doctor about this. I have had two biopsies/dense breast tissue also....Had stage 2a hodgkins disease 17 years ago. Any information would be greatly appreciated!!

cathyp

HD in 1989 and 2004, BC in 2008
I was diagnosed in 1989 and received mantle radiation. The HD reoccured in 1994 and I was treated w/ABVD. Starting around 2004, I wanted to discuss the option of a prophylactic mastectomy. Unfortunately, I didn't push hard enough for it and I was diagnosed w/Invasive Ductual Carcinoma in one breast and LCIS in the second in 2008. I had a double mastectomy w/no other treatment. (I can not receive any more radiation to the chest area and chemo would have reduced a chance of reocurrence by 1 or 2 %. Also, I had problems w/tamoxifen so I only took that for 2 months.) After gathering all of mammograms, there was always the same area of interest that was noted as calcium deposits. 2 breast MRIS were inconclusive. A new radiologist sent me for a biopsy of the calcium deposits that turned out to be cancer.
Are you going for routine echos? You probably are aware that we have a greater risk for heart problems due to the radiation and ABVD.
There is always a fine line about getting info on the internet. I don't mean to scare anyone but we all should be informed so we can help police our bodies w/our pcp's and oncology docs.
Best of luck with your breast cancer specialists appt. Do they have a specific interest and knowledge in second cancers for HD survivors?

livelife86

cathyp said:

HD in 1989 and 2004, BC in 2008
I was diagnosed in 1989 and received mantle radiation. The HD reoccured in 1994 and I was treated w/ABVD. Starting around 2004, I wanted to discuss the option of a prophylactic mastectomy. Unfortunately, I didn't push hard enough for it and I was diagnosed w/Invasive Ductual Carcinoma in one breast and LCIS in the second in 2008. I had a double mastectomy w/no other treatment. (I can not receive any more radiation to the chest area and chemo would have reduced a chance of reocurrence by 1 or 2 %. Also, I had problems w/tamoxifen so I only took that for 2 months.) After gathering all of mammograms, there was always the same area of interest that was noted as calcium deposits. 2 breast MRIS were inconclusive. A new radiologist sent me for a biopsy of the calcium deposits that turned out to be cancer.
Are you going for routine echos? You probably are aware that we have a greater risk for heart problems due to the radiation and ABVD.
There is always a fine line about getting info on the internet. I don't mean to scare anyone but we all should be informed so we can help police our bodies w/our pcp's and oncology docs.
Best of luck with your breast cancer specialists appt. Do they have a specific interest and knowledge in second cancers for HD survivors?

very similar to CathyP
Hi CathyP/ My experience is almost identical to yours. HL in 1989 treated with half mantle radiotherapy, recurrance in 2003 treated with ABVD, calicified 'left over tumour' sites edge of right breast misdiagnosed as were actually breast cancer. These were left untreated for 5 years !!!!!! by which time I now have advanced and aggressive breast cancer, one mastectomy done, another planned. I am having chemo though taxotere and cyclophosphamide- which my Doc as said will give me an extra 10% chance of survival, also having some radiotherapy as there wasn't a clear edge to the tissue that they took in the mastectomy. For anyone who has had radiotherpy for HL please be so vigilant with breast self examination and push hard with Docs to biopsy any abnormalities early. Every time I went for follow up over those 5 years I said i wasn't happy about these lumps but was told not to worry !!!!!!!

cathyp

livelife86 said:

very similar to CathyP
Hi CathyP/ My experience is almost identical to yours. HL in 1989 treated with half mantle radiotherapy, recurrance in 2003 treated with ABVD, calicified 'left over tumour' sites edge of right breast misdiagnosed as were actually breast cancer. These were left untreated for 5 years !!!!!! by which time I now have advanced and aggressive breast cancer, one mastectomy done, another planned. I am having chemo though taxotere and cyclophosphamide- which my Doc as said will give me an extra 10% chance of survival, also having some radiotherapy as there wasn't a clear edge to the tissue that they took in the mastectomy. For anyone who has had radiotherpy for HL please be so vigilant with breast self examination and push hard with Docs to biopsy any abnormalities early. Every time I went for follow up over those 5 years I said i wasn't happy about these lumps but was told not to worry !!!!!!!

Hope we reach all of our sisters and brothers!
livelife86

Best of luck w/your surgery and chemo. My heart truely goes out to you.

It almost seems that for anyone treated w/mantle radiation 20 or so years ago should have been offered the prophylactic mastectomy option years ago. I didn't have any lumps to feel so please push to read your mammogram results, keep copies and don't accept that "calcifications" rarely indicate a possible cancer. As Hodgkins patients, we are special patients and can not be considered the 30 or 40 something yr old getting a routine mammogram.

Unknown

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abbyford

hi cher26bear, yes from what I have read, risk of breast cancer after mantle radiation for Hodgkin's is a lifetime risk of 32% I have also seen 50% lifetime risk for our category of patient. I have also met with two surgeons, a medical oncologist who confirmed my risk for breast cancer is that high.
Actually tomorrow I am meeting with the plastic surgeon who will do the reconstruction after I have bilateral prophylactic mastectomy in November. I have already had two children and breastfed them, so would rather decrease my risk now. It's a covered indication "mantle radiation after Hodkin's lymphoma" on my insurance. Best of luck to you as you make your decision! take care.

m-star

abbyford said:

hi cher26bear, yes from what I have read, risk of breast cancer after mantle radiation for Hodgkin's is a lifetime risk of 32% I have also seen 50% lifetime risk for our category of patient. I have also met with two surgeons, a medical oncologist who confirmed my risk for breast cancer is that high.
Actually tomorrow I am meeting with the plastic surgeon who will do the reconstruction after I have bilateral prophylactic mastectomy in November. I have already had two children and breastfed them, so would rather decrease my risk now. It's a covered indication "mantle radiation after Hodkin's lymphoma" on my insurance. Best of luck to you as you make your decision! take care.

hi abbyford
just wanted to
hi abbyford
just wanted to say, i had a proph BMx in Feb this year.Had mantle rads for HL in 1990/91. Was told of the high risk in 2003 and was screened annually since.But years of wondering and waiting for it to happen got too much so took matters into my own hands and requested this surgery.
I has tissue expanders put in and am being 'pumped up' as we speak! should be due implant exchange about end of september hopefully.

I have a 12 yr old daughter and dont want to have to go through another cancer diagnosis if i can help it. This was at least something i could something about so i did.
I dont regret it for a second either.

Kay

kgold

m-star said:

hi abbyford
just wanted to
hi abbyford
just wanted to say, i had a proph BMx in Feb this year.Had mantle rads for HL in 1990/91. Was told of the high risk in 2003 and was screened annually since.But years of wondering and waiting for it to happen got too much so took matters into my own hands and requested this surgery.
I has tissue expanders put in and am being 'pumped up' as we speak! should be due implant exchange about end of september hopefully.

I have a 12 yr old daughter and dont want to have to go through another cancer diagnosis if i can help it. This was at least something i could something about so i did.
I dont regret it for a second either.

Kay

Kay,
I am 31 years old, had
Kay,

I am 31 years old, had mantel radiation for HL when I was 18. Just had my third biopsy. I am considering a BMx, but am in the early stages of the process. I was wondering if I could correspond with you about your decision making process a bit. If you are willing, I can give you my email address. Thank you.

m-star

kgold said:

Kay,
I am 31 years old, had
Kay,

I am 31 years old, had mantel radiation for HL when I was 18. Just had my third biopsy. I am considering a BMx, but am in the early stages of the process. I was wondering if I could correspond with you about your decision making process a bit. If you are willing, I can give you my email address. Thank you.

hi
of course. if you want to
hi
of course. if you want to give me your email via private message on here than i will be more than heppy to chat with you.
look forward to hearing from you

Kay

lgordee

kgold said:

Kay,
I am 31 years old, had
Kay,

I am 31 years old, had mantel radiation for HL when I was 18. Just had my third biopsy. I am considering a BMx, but am in the early stages of the process. I was wondering if I could correspond with you about your decision making process a bit. If you are willing, I can give you my email address. Thank you.

DCIS and Considering double masectomy
Kgold (and Kay) I am 33, had mantle radiation also in addition to MOPP ABVD at age 16. I've a spot that's been followed for the past 3 years. They now, after several core biopsies and a partial mastectomy, are recommending a total matectomy on the right side. They've had limited success seeing the spot on mammograms and ultra sound. The 'mass' associated it was really only visible on an MRI. Fortunately my onc has been a very aggressive and supportive individual when it comes to watching the area and testing it. I also am considering doing the other side as a precaution after reading many posts on varous discussion boards. I have 3 children, 6, 4, & 2 and am concerned about doing both at the same time with regard to the healing process. I am a teacher and will be off for the summer and will be their primary caretaker. I look forward to hearing from both of you.
Laura

lgordee

Yes high risk for breast cancer
Cher26bear,
I have been told since my early years (stage III/IV b also 17 years ago with MOPP ABVD and mantle radiation)that I was HIGH risk for breast cancer. My radiologist and onc both demanded annual mammograms and while breast feeding and/or pregnant coming in routinely for check-ups for this. My onc also at one point wanted me to stop nursing so they could do some screening to follow a lump. There were some interesting studies they shared that showed a correlation between those who had ceased menses during treatment and a lower risk for breast cancer. They also saw a similar effect with (if I remember correctly) an even lower occurence for those who had radiation to cervical lymph nodes. They attributed this to lower levels of estrogen for some time. I am being told there are some who are looking into putting young girls (those at highest risk when recieving mantle radiation of breast cancer) into a temporary menopause to decrease their risk. My onc is also looking at putting me on tamoxifen as a preventitive for the opposite breast right now due to these issues. (the tamoxifen blocks the estrogen so that it doesnt feed the cells that mutate) ***Obviously I am not a physician and this is coming from my very recent 2 week experience of biopsies, partial mastectomy, and planned total mastectomy and 4-5 visits with hours spent discussing it all...I share what I remember to be true in the way it makes sense to me. However, I share it to hoepfully shed some light and encourage others to ask when visiting their doctors. Several other sites I've been on seem to point to long-term survivors being most at risk for Leukemia (5-10 years out), Breast cancer (bewteen 10-20 years out) and sarcomas (looking for skin changes and lumps on the front sides and back of where you were located....having every change biopsied is what my onc recommends), lung issues (from severe reduction of function, asthma, increased risk of pneumonias, bronchitis, etc, and lung cancers) -some of the lung issues due to the toxicity of the chemo as well.
Laura

m-star

lgordee said:

Yes high risk for breast cancer
Cher26bear,
I have been told since my early years (stage III/IV b also 17 years ago with MOPP ABVD and mantle radiation)that I was HIGH risk for breast cancer. My radiologist and onc both demanded annual mammograms and while breast feeding and/or pregnant coming in routinely for check-ups for this. My onc also at one point wanted me to stop nursing so they could do some screening to follow a lump. There were some interesting studies they shared that showed a correlation between those who had ceased menses during treatment and a lower risk for breast cancer. They also saw a similar effect with (if I remember correctly) an even lower occurence for those who had radiation to cervical lymph nodes. They attributed this to lower levels of estrogen for some time. I am being told there are some who are looking into putting young girls (those at highest risk when recieving mantle radiation of breast cancer) into a temporary menopause to decrease their risk. My onc is also looking at putting me on tamoxifen as a preventitive for the opposite breast right now due to these issues. (the tamoxifen blocks the estrogen so that it doesnt feed the cells that mutate) ***Obviously I am not a physician and this is coming from my very recent 2 week experience of biopsies, partial mastectomy, and planned total mastectomy and 4-5 visits with hours spent discussing it all...I share what I remember to be true in the way it makes sense to me. However, I share it to hoepfully shed some light and encourage others to ask when visiting their doctors. Several other sites I've been on seem to point to long-term survivors being most at risk for Leukemia (5-10 years out), Breast cancer (bewteen 10-20 years out) and sarcomas (looking for skin changes and lumps on the front sides and back of where you were located....having every change biopsied is what my onc recommends), lung issues (from severe reduction of function, asthma, increased risk of pneumonias, bronchitis, etc, and lung cancers) -some of the lung issues due to the toxicity of the chemo as well.
Laura

hi Laura
yes i also read
hi Laura

yes i also read about those other long term risks.Very scary but hopefully the longer one can go without any problems,the better the research is for cancer and the better the cures become.

Personally,i would advise have both breasts removed but as you are your kids primary caregiver,its a tough one.
Were you going to opt for reconstruction and if so,what type? The "easiest" with regards fastest recovery time would be to have tissue expanders and then implants.Shortest surgery time also.

I would speak to your PS and ask if he would be ok with you getting the main breast removed first and TE (expander) put in place.Then once thats all done (around 6 months) think about having the other one done. It does drag it out a bit though.

If there is any way you could get them both done together and get some help with the kids,i think that would be a good option.But ultimately it is your choice.


Given your background with the mantle rads,i would get rid of those time-bombs that are disguised as boobs asap!

Ljean

BC after Hodgkins
Wow!! I am so glad to find this site. I was treated for stage IIIa hodgkin's in 1988 at age 20. At 36 I was diagnosed with grade 3 DCIS and treated with a masectomy with reconstruction. Two weeks ago I was diagnosed with a new primary in the reconstructed breast. It is a small stage 1, low grade but once again absolutely devestating. I am not sure what to consider for treatment as I am very concerned with the risk new treatments (mainly chemo) will pose for me in the future. I guess one thing I know is that a masectomy is not a 100 percent answer to the bc risk we face.

cathyp

Ljean said:

BC after Hodgkins
Wow!! I am so glad to find this site. I was treated for stage IIIa hodgkin's in 1988 at age 20. At 36 I was diagnosed with grade 3 DCIS and treated with a masectomy with reconstruction. Two weeks ago I was diagnosed with a new primary in the reconstructed breast. It is a small stage 1, low grade but once again absolutely devestating. I am not sure what to consider for treatment as I am very concerned with the risk new treatments (mainly chemo) will pose for me in the future. I guess one thing I know is that a masectomy is not a 100 percent answer to the bc risk we face.

BC
I saw your post on the BC boards and responded. I am curious as to what treatments will be recommended for you. I had a double mastectomy for stage 1, .3cm, low grade, er/pr + Invasive Ductual Carcinoma in 2008, 18 years after radiation for HD. No other treatment so I/m wondering how long I can go without a recurrence and if I have one, what will the symptoms be???
I feel for you and how devestating this news is to you. Best wishes.
Cathy

Ljean

cathyp said:

BC
I saw your post on the BC boards and responded. I am curious as to what treatments will be recommended for you. I had a double mastectomy for stage 1, .3cm, low grade, er/pr + Invasive Ductual Carcinoma in 2008, 18 years after radiation for HD. No other treatment so I/m wondering how long I can go without a recurrence and if I have one, what will the symptoms be???
I feel for you and how devestating this news is to you. Best wishes.
Cathy

BC
Thanks for your reply Cathy. I had a masectomy in January 2004, but wish now that I had gone with a bilateral masectomy. The new primary is on the side I had the masectomy (go figure!). At the time I was offered chemo but it was not strongly recommended so I chose not to have it as I am totally scared of what the long or short term effects could be. Not sure yet what treatment recommendation will be as I have a second opinion at the Mayo clinic on Wednesday. I still feel it was the right decision not to have chemo in 2004 as this is a new primary and not a recurrence. I am slightly er+ which opens the door for hormone therapy which I did not have the option for last time (er/pr-). To add even more confusion I am a grade 1 but tested positive for Her2 which doesn't make a whole lot of sense so I don't know what to think. Herceptin may be a possibility but it is usually given with chemo and my first doctor did not think that I necessarily need chemo and does feel it poses a greater risk to me than the average patient. All studies of herceptin seem to be done on grade2 or 3 tumors. It may sound totally crazy, but I am thinking seriously about turning to alternative medicine. One thing that I do feel has been beneficial is having a breast MRI yearly. I have had some false positives but it did pick this up.

Lorie

ddavenpo

Ljean said:

BC
Thanks for your reply Cathy. I had a masectomy in January 2004, but wish now that I had gone with a bilateral masectomy. The new primary is on the side I had the masectomy (go figure!). At the time I was offered chemo but it was not strongly recommended so I chose not to have it as I am totally scared of what the long or short term effects could be. Not sure yet what treatment recommendation will be as I have a second opinion at the Mayo clinic on Wednesday. I still feel it was the right decision not to have chemo in 2004 as this is a new primary and not a recurrence. I am slightly er+ which opens the door for hormone therapy which I did not have the option for last time (er/pr-). To add even more confusion I am a grade 1 but tested positive for Her2 which doesn't make a whole lot of sense so I don't know what to think. Herceptin may be a possibility but it is usually given with chemo and my first doctor did not think that I necessarily need chemo and does feel it poses a greater risk to me than the average patient. All studies of herceptin seem to be done on grade2 or 3 tumors. It may sound totally crazy, but I am thinking seriously about turning to alternative medicine. One thing that I do feel has been beneficial is having a breast MRI yearly. I have had some false positives but it did pick this up.

Lorie

BC after Hodgkins
Hi Everyone, I'm new to the site. I just wanted to share with everyone to not only get mammograms if you are at high risk from having had chest mantle radiation for hodgkins, but also MRI's. I have NHL in 1980 at the age of 17, I had no problems until a few years ago and was diagnosed with Stage II breast cancer. I had a double masectomy. I was very lucky because I had the Lobular carcinoma which typically does not show up on mammograms until its very large. It was a fluke I had LCIS when they did a biopsy at one point for microcalcifications so they followed me closely. It was also a fluke that I got them again later- a change in them- when they discovered I have Lobular carcinoma. You don't normally get microcalcifications from that type of cancer. So I totally agree with Lorie, it's important to get the MRI's done as the mammograms can miss a lot.

Debbe

ddavenpo

ddavenpo said:

BC after Hodgkins
Hi Everyone, I'm new to the site. I just wanted to share with everyone to not only get mammograms if you are at high risk from having had chest mantle radiation for hodgkins, but also MRI's. I have NHL in 1980 at the age of 17, I had no problems until a few years ago and was diagnosed with Stage II breast cancer. I had a double masectomy. I was very lucky because I had the Lobular carcinoma which typically does not show up on mammograms until its very large. It was a fluke I had LCIS when they did a biopsy at one point for microcalcifications so they followed me closely. It was also a fluke that I got them again later- a change in them- when they discovered I have Lobular carcinoma. You don't normally get microcalcifications from that type of cancer. So I totally agree with Lorie, it's important to get the MRI's done as the mammograms can miss a lot.

Debbe

BC after Hodgkins
Sorry meant to put HL in 1980 not NHL.

Debbie

m-star

Ljean said:

BC
Thanks for your reply Cathy. I had a masectomy in January 2004, but wish now that I had gone with a bilateral masectomy. The new primary is on the side I had the masectomy (go figure!). At the time I was offered chemo but it was not strongly recommended so I chose not to have it as I am totally scared of what the long or short term effects could be. Not sure yet what treatment recommendation will be as I have a second opinion at the Mayo clinic on Wednesday. I still feel it was the right decision not to have chemo in 2004 as this is a new primary and not a recurrence. I am slightly er+ which opens the door for hormone therapy which I did not have the option for last time (er/pr-). To add even more confusion I am a grade 1 but tested positive for Her2 which doesn't make a whole lot of sense so I don't know what to think. Herceptin may be a possibility but it is usually given with chemo and my first doctor did not think that I necessarily need chemo and does feel it poses a greater risk to me than the average patient. All studies of herceptin seem to be done on grade2 or 3 tumors. It may sound totally crazy, but I am thinking seriously about turning to alternative medicine. One thing that I do feel has been beneficial is having a breast MRI yearly. I have had some false positives but it did pick this up.

Lorie

Lori can i ask how they
Lori can i ask how they found your new cancer if the breast tissue had been removed? Where was the cancer actually found?
i had a prophylactic BMx in feb as i had HL in 1990 aged 17 and was treated with chemo and mantle rads,making me high risk.

but because i no longer have breasts,the only form of screening i will get is manual checks.I will no longer get MRI's or mammo's.i have had my TE's put under the pec muscle so they said any lump would be palpable but i do worry as they said they cannot remove the risk 100%.

i need to know what to look out for as in your case,you can obviously still get BC even when there is no breast tissue.

many thanks

Kay

Ljean

m-star said:

Lori can i ask how they
Lori can i ask how they found your new cancer if the breast tissue had been removed? Where was the cancer actually found?
i had a prophylactic BMx in feb as i had HL in 1990 aged 17 and was treated with chemo and mantle rads,making me high risk.

but because i no longer have breasts,the only form of screening i will get is manual checks.I will no longer get MRI's or mammo's.i have had my TE's put under the pec muscle so they said any lump would be palpable but i do worry as they said they cannot remove the risk 100%.

i need to know what to look out for as in your case,you can obviously still get BC even when there is no breast tissue.

many thanks

Kay

Kay- I actually felt the
Kay- I actually felt the lump around the same time that I was scheduled for my annual MRI. The MRI confirmed the nodule which led to a biopsy. I had the same proceedure as you with the implant under the muscle and the nodule was very easy to feel even though it was only 9mm. I do think that most likely any new cancer would be felt/discovered at a very early stage post masectomy. In some ways I find the MRI to be comforting and in others its a total pain as it does tend to pick up many false positives.
Lorie

cher26bear

m-star said:

hi
of course. if you want to
hi
of course. if you want to give me your email via private message on here than i will be more than heppy to chat with you.
look forward to hearing from you

Kay

Hi Kay!
It's been a while
Hi Kay!
It's been a while since I have been on this site....but I finally have a date for my expanders...March 9th. I am getting the skin/nipple sparing masectomy.
Nervous about the surgery for the expanders....She wants me off three weeks minimum.
Can you let me know how your surgery went?
Thanks sooo much
Sherry