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Breast cancer after radiation for Hodgkins disease

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

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's picture
cathyp
Posts: 366
Joined: Dec 2009

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
Posts: 2
Joined: Jan 2010

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's picture
cathyp
Posts: 366
Joined: Dec 2009

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.

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abbyford
Posts: 1
Joined: May 2010

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's picture
m-star
Posts: 444
Joined: Apr 2010

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
Posts: 1
Joined: Jun 2010

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's picture
m-star
Posts: 444
Joined: Apr 2010

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

cher26bear's picture
cher26bear
Posts: 9
Joined: Nov 2009

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

Lisette123's picture
Lisette123
Posts: 1
Joined: Jan 2012

Hi Sherry,

I am new to this site and I too had HL back in 1990, was treated with RT, spleenectomy and chemotherapy. I was just diagnosed with BC a few weeks ago and told my best option was a bilateral masectomy as RT is not a good idea after past treatment. I am guessing you were told the same thing? I am currently researching what type of reconstruction to have and leaning towards implants with expanders as my best option. I am very nervous as well and have been wondering about skin/nipple sparing surgery although my surgeon seems reluctant. Can I ask how your surgery went and if you are happy with the results?

Thanks so much,

Lisette

lgordee
Posts: 6
Joined: Jul 2000

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

JCAinSF
Posts: 1
Joined: May 2015

Hi Kay,

I realize you last posted to this site years ago, but I'm hoping your email address is still active. I too am a HL survivor -- treated in 1991/92 and, as a result, now at high risk for breast cancer. I am considering a prophylactic mastectomy. Now that you are five years out from your surgery (congratulations), is there any advice you would give to others considering this option? I know it's a very personal decision, but is there anything that you wish you had known before the surgery (i.e., wondering if you've had complications related to the implants, etc.)? 

Thanks so much.

lgordee
Posts: 6
Joined: Jul 2000

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's picture
m-star
Posts: 444
Joined: Apr 2010

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
Posts: 4
Joined: Sep 2010

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's picture
cathyp
Posts: 366
Joined: Dec 2009

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
Posts: 4
Joined: Sep 2010

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
Posts: 2
Joined: Sep 2010

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
Posts: 2
Joined: Sep 2010

Sorry meant to put HL in 1980 not NHL.

Debbie

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

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
Posts: 4
Joined: Sep 2010

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

marshje3
Posts: 4
Joined: Mar 2011

This is a real risk as well as early onset coronary artery disease due to the radiation damaging the arteries in your heart.

I had mantle radiation at age 11 in 1986 and was warned by a nurse friend of mine about 8 years ago to the increased risk of breast cancer as documented in this article and others http://www.ncbi.nlm.nih.gov/pubmed/11173152. My doctors at the University of Michigan were unaware until I brought them a copy of the article. I have since had a baseline and followup mammograms. Not normally covered by insurance for a person in their 20s and 30s, even the insurances will cover it because of the increased risk.

As a side note, I have also battled with early onset heart disease as the doctors believe that the radiation to my chest (my mass was located directly on top of my aorta so the heart had to be in the radiation's path) created scar tissue to build up within the coronary arteries. It took 4 years for them to uncover the cause of my fatigue and shortness of breath, but we got there! As a young female, drs. often don't look at the whole picture and think outside the box in regards to female heart disease.

Good luck and push the docs - it is very important to be your own advocate as these docs are really busy and can tend to overlook!

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I am a 21 yr survivor that added a Long term Effect Specialist to my team. Not all PCP's, cardiologists, oncologists etc are aware or do not recognize all the possible LT Effects for us.

Cathy

HD 1989 -RADS
HD 1994 - ABVD
IDC 2008 - DBL MX
Hypothyroidism
Heart Problems

summersetmom
Posts: 1
Joined: Mar 2011

Hi..yes most definitely we are at higher risk not only for breast cancer but also thyroid cancer. I had Hodgkins 2B 23 years ago and had mantle radiation and ABVD chemo, and have just been diagnosed with breast cancer. Because I can't have any more radiation I need to have a double mastectomy in the next couple weeks. Also about 4 years ago nodules on my thyroid were determined to be cancerous and my thyroid was removed. I understand that complications like breast cancer later are making chemo the preferred method of treatment. Don't let any gynecologist be cavalier if you have breast issues, and definitely have regular mammograms. You are at higher risk.

karissashelly
Posts: 1
Joined: Jun 2011

A good resource would be Dr. Melissa Hudson @ St Judes. She is the leading DR for Hodgkins and after care. She researches this. My daughter also had Hodgkins at age 11 and had full body radiation. She now has a lot of scar tissue in the chest area and also lumps. It is my understanding Hodgkins can return to the breast area but it is rare. The radiation make your breast very dense. My daughter is now 20 years of age and because her breast are so dense they could not feel the lumps. She has several. We have been told you are a higher risk of secondary cancers in your body. I would check out St Judes web cite they have alot of info or email Dr Hudson for information.

Butterfli7's picture
Butterfli7
Posts: 10
Joined: Jul 2015

I had hodgkins in 1987.  I have not had breast cancer and am lucky because I really put off having checkups for this.  I have been 28 years cancer free.  I am at a very high risk because when they did radiation treatments in 1987 they did not know the problems you can have from the treatments. A lot has changed with the way they do treatments for hodgkns now,  Your risk is probably less now then when I had my cancer.  I think anytime you have had radiation treatments you should always be treated with more concern by any doctor.  A lot of it unfortunately for them is which route for them to go because insurance is holding a lot of the cards for you.  You need to find a doctor that is willing to fight for you with the insurance company to do the best procedure possible to get the correct diagnosis.  If you look on the internet at your insurance coverages about breast MRI's they will only want to cover patients that had rediation treatments between the ages of 10 to 30 years of age. This is something most people do not know.  It is a preapproved procedure to thoroughly check for breast cancer. I know this because I had a greast oncologist in 1987 and I went back to see him about problems with my neck.  I had not had a breast exam in a while and he talked me into having one.  I did a diagnostic exam and it was questionable and he had me do a breast MRI. Everything turned out to be ok.  He told me that I was entitled to breast MRI one a year because i had radiaton treatments when I was 28 years of age.  They do things different now with treatment for hodgkins then when I had mine.  They used to take out your spleen.  They try not to now.  All I can say is look out for things further down the line and keep an eye out on the internet for information on latter side effects for radiation treatments for hodgkins.  The reason I say this is because I had radiation to the chest and at my neck also. (I had two masses, chest and one in my neck)  In 2004 I started having neck problems with pain and weakness in my neck.  I looked for help with this.  I went to a chiropractor in 2004 and then saw a neurologist in 2009.  I finally got a diagnosis.  Neck fribrosis. The weakening of the muscles or hardinging and tightning of the muscles.  I am basicly the only thing holding my head up.  I also went to a orthopedic doctor and got a neck brace to help with this.  I also had a heart attack in 2014 and tripple bypass surgery. I also have restrictive lung disease due to scarring in my lungs due to radiation treatments.  I am not telling you this to scare you.  The doctors did not tell me to watch for these things because in 1987 they did not know these causes would happen in the future.  Just saying keep a watch out down the line.  Don't let the doctors look at you in the future as if you are crazy and have two heads.  You could be your only advocate. Search for a good doctor.  I couldn't find one to help me so that is why I went back to my oncologist and ask him to listen to me and help me.  I am not saying these things to scaare you I am only saying just be aware of health issues down the line (years from now).  I am glad to be alive and see my children and grandchildern grow up. 

 

mmrmaptnt
Posts: 2
Joined: Oct 2015

I seem to be going the other way. I was just diagnosed with breast cancer and now it seems they have found a separate series of mesentary and retroperitoneal nodes that are lighting up unrelated to the breast cancer. My axillary nodes are fine. I wonder if other have experienced this double unrelated cancer situation

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1733
Joined: May 2012

mmrmaptnt,

I am curious: how do the doctors know that the mesentary and other nodes are "unrelated to the breast cancer ?"  Virtually always, only a biopsy can identify what strain of cancer is in a node (or any other form of tumor, for that matter).  I have never heard of a PET or other scan being able to differentiate in this manner.

I ask because a dear friend is terminal with Stage 4, "triple negative" breast cancer.  She never had axillary node involvement, but the disease was behind the sternum and at other remote locations.  She begain with four months of neoadjuvant "TAC" chemo, then had surgical removal. She then went to M.D. Anderson to begin two months of radiation therapy, but they sent her home, saying any further treatments were pointless.  She was offered palliative Taxotere, but declined.

 I hope your situation is easily treatable and curative.  Anyone can have two unrelated cancers simultaneously, but it is ungodly rare.  But I would verify that they are indeed unrelated.  I would assume that both are treatable and, in most cases, probably curable.  I myself have had (a few years apart) Stage 3 Hodgkins and Stage 2 prostate cancers, but they were determined unrelated via biopsy.

http://chemocare.com/chemotherapy/acronyms/tac.aspx

 

max

mmrmaptnt
Posts: 2
Joined: Oct 2015

Well I had laparoscopic surgery last week and the results are coming this week to confirm, but the PET scan only lit up in the breast, the mesenteric lymph nodes (very high SUV uptake), the Retroperitoneal Lymph nodes and a mild uptake that could not be ruled out in the Supraclavicular lymph nodes.  The breast lymph system empties into the axillary lymph nodes which look clean on the PET scan, but they still could reflect cellular level cancer. 

It is still possible that it is a metastasis, but even the surgeon doing the laparoscopy said it did not look like breast metastasis.  I am not sure what he meant, but he has seen a lot of this over his career. I should know more diffinitively later this week or early next week, but I am trying to learnmore about the possibilities.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1733
Joined: May 2012

I hope that definitive results show that you have only the one cancer to worry about.  While the general lymphatic flow from the breast is into the armpit region, not all cancers, once in the lymphatic system, move node-to-node; that is, they can crop up in remote areas.  I learned in dealing with prostate cancer, which is also (like breast) an hormonally-related cancer, that spread is essentially random, and can first appear nigh anywhere, even in the brain.  But of course, the first place surgeons look when removing the prostate is in the adjacent and regional nodes, since they are the most common place to detect early disease if it has escaped the gland itself.

Again, I hope you have only one battle to fight, not two.

 

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