Breast cancer after radiation for Hodgkins disease

marshje3

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

marshje3 said:

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!

LT Effect Specialist
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

breast cancer after hodgkins radiation
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

Cancer after Hodgkins
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.

Lisette123

cher26bear said:

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

Surgery
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

JCAinSF

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

Anything you wish you had known before surgery/reconstruction?

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.

Butterfli7

breasst cancer checkups- hey all new to site

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

Butterfli7 said:

breasst cancer checkups- hey all new to site

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. 

 

I seem to be going the other
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

mmrmaptnt said:

I seem to be going the other
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

Questions

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

Max Former Hodgkins Stage 3 said:

Questions

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

Unrelated Breast Cancer and Mesentery Lymph Node involvement

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

mmrmaptnt said:

Unrelated Breast Cancer and Mesentery Lymph Node involvement

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.

 

Hope

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.