Posted on: Feb 13, 2011 08:32 PM
Is there anyone out there who had Hodgkin's Lymphoma (Disease) many years ago and has had a secondary breast cancer diagnosis?
I had radiation (mantle) 17 years ago for a mass next to my windpipe in my chest. This week I was diagnosed with breast cancer and am preparing for a double mastectomy and reconstruction.
I would love to connect with other Hodgkin's survivors.Log in to post a reply
Posts 121 - 150 (222 total)
Apr 28, 2012 04:49 AM mariwyl wrote:
Alrighty. My sx date is May 9, 12 days from now. I just had my pre-ops today, and my sx has my disability and leave paperwork all done. Now all I need to do is actually HAVE the surgery! LOL Egad! I keep thinking, "is this the right thing?" I mean, I have one little (4mm) tumor on one breast. I think when I talk to people about it, they are like, "Really??? a BILATERAL mastectomy???" Then I have to go into explaining risk factors, XRT, family history, and the relief of life long anxiety about recurrence, etc., and then I second guess my decision. It'd be easy to change my mind. Surgery isn't something I just say "sure" to. As Hemmingway once quoted, "A coward dies a thousand deaths, a brave but one." I'm the coward. :-)
May 10, 2012 07:16 AM Fighter_34 wrote:
Does anyone take aspirin or metformin in the attempts to prevent this beast from coming back? I am on doing both and I just wanted to know if anyone else is doing this as well, and also to shed light on these options if you don't know.
Stay strong and keep moving forward.
May 10, 2012 05:25 PM lifelover wrote:
There has been a lot of news lately about the positive affects of aspirin, particularly in relation to cancer.
Always check with your doctor before self-prescribing. I can't take aspirin on a regular basis because I bleed easily and must be careful not to "over-thin" my blood.
Anyone else taking aspirin?
May 12, 2012 02:20 AM Fighter_34 wrote:
Lifelover- Metformin is a trial study being offerred through some of the major cancer centers here in States. I was referred by my doctor given my present situation and pass battle with cancer. With this type of illness I wouldn't advise anyone to take anything w/o consulting their doctor first.
I had the same worries once I started reading that aspirin could thin your blood and cause ulcers as well, but my ONC said try a baby aspirin only take it 3x's a week.
May 12, 2012 05:09 PM lifelover wrote:
Thanks Fighter. Great advice! I must ask my onc about metformin for sure.
Jun 7, 2012 01:53 AM jeannehackenberg wrote:
I just yesterday read an article about the post Hodgkin's disease breast cancer occurrences which lead me to this website. I was diagnosed in 1974 at the age of 19 with Stage 2A Hodgkin's and was treated with the old time cobalt radiation to the chest followed by radiation to my abdominal area. I was then diagnosed with DCIS in 1998. I had a mastectomy and reconstruction. I had an expander put in at the time of surgery followed by the implant 7 months later. I had a couple opinions about the reconstruction and at the time was told this was the safest choice due to the fact that the skin and tissue in that area had already been exposed to radiation. The decision to have a mastectomy was easy for me because I was told at the time that they felt my breast cancer was caused by the radiation. My surgery and reconstruction went well and I continue to do well. After much discussion and a couple opinions from very well qualified hospitals, I chose not to go on Tamoxifin. Have any of you taken the tamoxifin? Also, no one seems to be able to give me an answer as to how long the implants last. As I discussed this with my husband last night, his comment was, "just think what would have happened if you hadn't received the radiation". Good thought. I feel we must be diligent with our check ups and then whatever may ocurr we will be catching it early. Wish I could have connected with girls like us a LONG time ago. Couldn't find a soul that was going through Hodkins when I was or a survivor of Hodgkin's with breast cancer at the time of my diagnosis. Have always wanted to reach out to gals like us if anyone needed a shoulder. What a great site!
Jun 7, 2012 02:09 AM debshipshape wrote:
I also want to second how wonderful it is to have this forum. I seem to be in the minority because I chose to have a lumpectomy and brachytherapy. It is hard to sit with the fear or recurrence but I feel like this was the right decision for me based on the pathology of the tumor. Of course, I will remain hyper-vigilant as we all do. I am 31 years from my Hodgkins diagnosis, hyper-vigilance is a way of life.
I am two month from my surgery and 7 weeks from the end of treatment. I feel good, my energy returned, my body still a bit beaten up.
I think it is important to say there are other choices besides mastectomy these days. It is all about your personal risk tolerance. I believe the medical profession does too much to push the mastectomies but time will tell if I am misguided on that.
Love to all of you,
Jun 7, 2012 05:25 AM kle wrote:
Hi Jeanne and Deb..
I agree it is great to touch base with others. I had a Unilateral MX, so I'm on tamoxifen, 3 1/2 years so far because of the high risk in my good breast. The how long an implant will last is a good question..but no correct answer..it could need replacing anywhere from 10 years to never...I know someone who has her's over 20 years still in place...and I'm sure they are even made better now ( we hope).
I just also want to mention , last year I was diagnosed with radiation induced coronary artery disease, which led to a severely blocked artery to the heart and I had to have by pass surgery. All due to the radiation I had 20 years ago for HD. Be sure a cardiologist is on your team!
Jun 7, 2012 08:21 AM DeborahC wrote:
I am taking tamoxifen (just started last month). I still have the expanders for a few more months. I keep hearing that 10 year life estimate on the implants and I am just hoping that it will at least make it 20 years, because I am tired of surgery.
Jun 7, 2012 10:25 PM lifelover wrote:
Hi and welcome Jeanne and Debs to this forum.
Jeanne, I started tamoxifen in September 2011 and will be on it for 3 years before I change to Femara (letrazole) for 3 years. As I had lymph node involvement and extensive lymphovascular invasion it was highly recommended.
I'm told by my breast surgeons that they still don't have enough information on survival rates or similar stats for long-term Hodgkins survivors but that I should take the tamoxifen to increase my changes of remaining NED. I was 100% estrogen positive and so tamoxifen was recommended especially in this instance.
Debs, you are so right. Mastectomy is a personal decision. It was given to me as only one of my choices - my surgeons were okay with me having a lumpectomy if that was my decision. They didn't push me one way or the other. They explained all the options to me. The only strong opinion they had for going forward was that I could not have any further radiation as I had my "maximum lifetime dose" in 1995.
Hi Kle and you are so right - a cardiologist is a must. I had a cardiology workup with an echocardiogram back in 1998 and again a few weeks ago. My team of BC doctors did not suggest a cardiologist to me - I had to insist on it myself knowing the risks.
I'd also recommend having your thyroid checked (mine is low and caused by radiation).
Also, reflux disease can be caused by radiation to the stomach or esophagus and if you have this it is essential to be on medication (such as previcid). There is a risk that constant reflux left untreated could cause an oral or esophageal cancer.
Please post any and all information you find in your research and experience. It is so helpful to us and also a great reminder about taking care to ensure we are on the right track.
Jun 9, 2012 02:55 AM Fighter_34 wrote:
I was Dx with Hodgkin's in 1989. After going through tx I was never really a sick, never had problems getting pregnant nor did I have complicated pregnancies. I have two kids. Neither were planned they kind of just appeared one day. LOL
I wasn't really informed about my first time around with cancer. My mother was very old school she just told me I was a little sick and that I would be okay and the radiation began. I believe she didn't want to scare me nor admitt that her child was facing a very serious battle. She just wanted to pretend all was well.
I started having mamos after doing my own research as an adult. After three mammos my tumor popped up out of nowhere between mammo. I found it myself in the shower. I decided to be bold and opted for the double-mx for peace of mind. Now my prayer is please GOD this poor girl has been through enough let me be PLEASE.
Sometimes I feel deep inside that my cancer was caused by all the pushing and mushing of my breast during those 3 mammos it woke up those cancer cells and got them going. I am not saying that it would have not happened anyways. Now I am more inclined to say NO to diagnostic tests that require radiation unless it is really needed. When I go to the dentist I just say clean my teeth no photos please and they understand.
I am telling my story to help others who my come along and this is just my opinion ladies. HUGS to us all.
Jun 9, 2012 03:21 AM shelleyfl48 wrote:
I am so sorry for all of you who are dealing with a bc diagnosis. I had Stage IIB HD 25 years ago in 1987-88 with mantle radiation/chemotherapy. I have been pretty healthy up to this point, other than some thyroid issues, but just last year, I had an opportunity to go to Mayo Clinic for a checkup with an oncologist. He highly recommended an MRI in addition to mammography for bc screening. My gyn was skeptical - warning that there are so many false positives with MRI. He said it would probably open me up to unnecessary testing. Reading this board reminds me that I am at a much higher risk of bc and I would probably be foolish not to take advantage of this technology. For some reason, I am having trouble going forward with the testing - it may be fear or a "head in the sand" issue. I am praying for peace with the decision to start down the testing road. Thank you all for posting your stories. I would appreciate any advice or wisdom you might have in your personal journeys with HD.
dx 12/87, Stage IIB HD
Jun 9, 2012 09:18 AM, edited Jun 9, 2012 09:20 AM by Still_Snarky
Shelley, as you can see from my signature I had Hodgkins in 98/99. I've been followed very closely by my onc team (partly because I was in a clinical trial) since then. I do NOT have a BC diagnosis but decided on my 30th birthday that I was tired of the testing and opted for a preventative mastectomy. This experience has been very empowering for me. 14 years of mamograms and breast MRIs has felt more invasive than the surgery I had about a month ago. As HL survivors insurance must cover mastectomy and reconstruction just as for women with the BRCA genes. This is what felt right for me. At the very least moving forward with testing will empower you with information and hopefully make this less scary. I hope you find the peace you're looking for. All the best.
Jun 9, 2012 11:13 AM shelleyfl48 wrote:
I honestly did not realize the risk of bc was so high. I have always gotten mammograms and hoped for the best, but this year I have begun to take it more seriously. I had read somewhere that risk declines once you are 30 years out, but when I looked for that article again, I couldn't find it. I was curious how the risk factors were presented to you. I had the same mantle radiation dose that you had. Thank you so much for responding. I don't want to live in fear, but I find this decision very difficult.
It is not helped by the fact that my current gynecologist seems to think MRIs are not a good choice because of the false positives. It may be time to find a new doctor, although I've been happy with him for everything else.
Jun 9, 2012 11:30 AM, edited Jun 9, 2012 11:30 AM by Still_Snarky
Shelley, I spent about a year and a half researching this (watching my own clinical trial and others). There are lots of factors for HD women that affect breast cancer risk (age at time of radiation, dose, fertility, race, and on and on). All things considered, my breast oncologist calculated my risk as being 30%-40% at the low end, and rising for the next several decades. One of the leading causes of death in HD survivors is secondary cancer. We're in an odd spot - the 'cure' rate is so high in HD and yet, there are lots of us suffering from the treatment that we received years ago (I have fatigue, hypothyroidism, osteoperosis and memory issues...at 30!). Treatment options can for secondary cancers can be limited because we may be 'maxed out' on radiation doses or certain types of chemo - survival rates are affected. I am not trying to be an alarmist by any means. My choice was based on many factors; I feel like I've had one aspect of this heavy load lifted off of my shoulders (or chest ha!).
I'm not trying to be rude but I feel strongly that your gynecologist is misinformed. Most breast oncologists (and HD oncs) feel that HD survivors should get BOTH breast MRI's and mamograms, every year, starting at age 25. (FWIW, I was treated at Stanford by one of the foremost HD oncs in the country, Dr. Michael Link). I see my onc every year for chest x-rays, bone scans, cardiology follow up, thyroid stuff and (formerly) breast health.
Do you have an onc currently? If you like your ob/gyn maybe stick with that Dr. for the stuff they're good at and find a breast onc in your area who is current on recommendations.
Please let me know if I'm overwhelming you with info. ;)
Jun 9, 2012 05:48 PM lifelover wrote:
Hi Fighter 34,
I don't know if this will make you feel better but the last 11 years before my BC was diagnosed I did not have any mammograms. My BC mass was found in the center of my right breast where the most radiation was aimed: the HD'd lymph node next to my esophagus.
At the time of my treatment for HD in 1995 I was told that I have a tiny chance of developing BC, something like 2% - that's what they knew then - they know a lot more now obviously.
Don't blame yourself if you can help it. It's the previous cancer treatment that disturbed your DNA. You've done all you can to take care of yourself.
Jun 9, 2012 11:16 PM DeborahC wrote:
I had annual mammograms, but they did not pick up my BC. I found it myself. Then when I did go for MRI there were lots of other areas they saw - but they all turned out to be nothing. So I see what they mean by false positives. Lifelover - I also remember my RO telling that my risk of breast cancer was very very small, but higher than the average persons. The study they released in Chicago last weeks showed that of the young girls treated for Hodgkin's - 30% have breast cancer by age 50. I did not think our risk ever declined for this.
Jun 10, 2012 09:57 AM shelleyfl48 wrote:
I absolutely agree that my gyn is misinformed. I'm so glad I went to Mayo Clinic and had a consult. My best bet may be to find a local oncologist who can work with me. I am very concerned about the false positive readings. I have read that 1 in 10 MRIs give false positives; however, they improve once you have a baseline MRI to compare future readings to. It is a tough call.
How did your doctor evaluate your risk? Does a younger age at treatment result in higher risk. I was 23 and I have no other risk factors for BC. Just curious how they can come up with a number.
I am going to be more vigilant on the self exams. It seems that a lot of people have found it that way.
Jun 10, 2012 11:40 PM mariwyl wrote:
shelleyfl48: My BC was diagnosed by MRI only. The mammogram did not catch it until I had the higher resolution mammogram AFTER the MRI spotted the 4mm mass. I receive the NEJM abstracts only (too expensive for the whole journal) and I was the one who insisted on the MRIs when this became published a few years ago!! My insurance had to have my MD verify that it was what I needed back then.
Now, for me, I have a MO appt in a few weeks. I am s/p BMX 5/9/12 with TE and 2 fills so far. No radiation tx needed. Since I am also a HL survivor of 37 years, I am very, very cautious about chemo/hormone treatments. I don't think I'll be a candidate for chemo, as I am post-menopausal, stage I, grade I, 0/2 nodes negative, very high ER+ (300) and PR+(290) HER2-, ki-67 15%, clean margins. I am certainly within the recommended group for Oncotype dx testing, so I will request that BEFORE any chemo decision is made. Anyone with similar experience? Also, anyone know the top MO in Pittsburgh, PA??? I am VERY choosey about my MDs.
Thanks!!! Good luck to all!!!
Jun 15, 2012 08:34 AM michellej1980 wrote:
I was diagnosed with HD in 1996, aged 16. I had radiation to the chest and neck (as well as abdomen and pelvis) in 1998 after 2 courses of chemo failed to get rid of the disease. I've been going for annual MRIs for about 6 years and only now is the risk of BC starting to sink in. My recent scan showed an "abnormality" in the left breast so I was sent for a mammogram and ultrasound which both came back normal. To be sure, I am having an MRI-guided biopsy. I wasn't too worried at first but after reading more about the risk and reading so many stories of people on here being unfortunate enough to be diagnosed with a secondary cancer I am not so optimistic. I think, even if it's okay this time that the odds are against me and it'll get me in the end. I can't believe that doctors have only just realised the effects of the radiotherapy. What makes it worse for me is that the RT didn't even get rid of the Hodgkin's - I ended up having to have a bone marrow transplant which is what finally 'cured' me.
Anyway, best of luck to everyone in the HD club!
Jun 15, 2012 04:57 PM lifelover wrote:
Here's a recent article about breast cancer risk in HD survivors that is interesting reading.
Hope the link works. Let me know if it doesn't. It's on the "Elsevier Global Medical News" site and is entitled "Hodgkin's Survivors Face Higher Breast Cancer Risk".
Jun 15, 2012 05:06 PM lifelover wrote:
Good luck with your MRI biopsy. Thank goodness they are doing it! My lump didn't show up on mammo or ultrasound as being a risk and they did a shoddy fine needle biopsy so I waited an entire year for them to confirm cancer in the lump with further tests and a core needle biopsy.
I've learned to get second opinions now when I think something is wrong.
Do consider a consult with a cardiologist (to check heart valve function) and an endrinologist (to check thyroid function).
The ACOR website has a forum for long term survivors with some excellent tips.
I wish I knew sooner how risky the radiation I had was (I had over 5000 rads to my breast area). They do not give such high doses today.
Jun 16, 2012 10:21 AM michellej1980 wrote:
I have met a couple of times with an endocrinologist in a late effects clinic. I had heart and lung function tests and both were fine, although I definitely do get out of breath quite easily. My thyroid packed up within months of finishing RT to my neck so I get regular blood tests to check thyroxine levels.
The doctor I saw this week said that the clear mammo and u/s was reassuring but I'm becoming less convinced. Only time will tell I guess...
Jun 19, 2012 03:34 AM DeborahC wrote:
Hi, Michelle. I was wondering the same thing. Most of us seem to have IDC - but that could just mirror the general population. I am now also getting basal cells in the chest area. It's funny - About 6 months ago I was just starting to do some research and reading about our risk of BC and how some women were even getting prophylactic BMX's. A few months later I found my own lump. I hope this doesn't happen when I start looking into all the heart issues I am now hearing about!
Jun 23, 2012 03:42 AM, edited Jun 23, 2012 05:54 AM by Moderators
Hello All ~
I am coming to you s a new member needing HELP ... PLEASE!!! I was diagnosed with Hodgkins Lymphoma in 1984 at the ge of 18. I was treated with radiation therapy only ... My life time dose. No recurrent issues until April of 2011 when I was diagnosed with DCIS in my right breast. After many many prayers and tears, I opted for a Lumpectomy with no radiation being that I cannot have anymore due to receiving my lif-time dose in 1984. The surgeon did NOT get clean margins so wwe had to go for a 2nd lumpectomy. This time ... clean margins were reached. I was to be followed-up every 6 months.
I went December 2011 for follow-up mammogram and there was indeed a spot that was suspicious but the radiologist marked the sheet of paper to say "most probably benign ... follow-up in six months". Now looking back and knowing my history ... I wished I had demanded further checking at that time ... But, I didn't.
This brings us to now ... June 13 follow-up mammogram #2 ... showed 'abnormal'. They immediately got more magnified views. They warranted a core biopsy. The cor biopsy came back as DCIS again basically in the same area as in 2011. My breast surgeon and the cancer board discussed my unique case and came to the decision that a mastectomy is highly recommended due to my having a VERY HIGH chance of getting another cancer of the breast and the next time could very easily be a very agressive cancer rather than the DCIS which I have now.
Of course .. I am terrified and this is by no means what I want but ... feel that the chances are indeed of my getting a very agressive cancer that we could do nothing about.
Here is my issue now ... my breast surgeon is not very familiar with us
Hodgkins Survivors and our mantle radiation. I had HD in 1984 with my lifetime
dose of radiation. I want THE BEST to do my mastectomy and reconstruction but
HAVE NO CLUE WHO TO GO TO!! My breast surgeon has me in with a Plastic Surgeon
on July 3rd but I hear he is quite young and does not have that much experience
I am begging for your alls help as to what you would do???? I have called
several Plastics docs and they do not take insurance only private pay ....
Wonder what amount we are talking??
Have any of you dealt with this exact problem? I would love to have a
nipple and skin sparing surgery and then have the reconstruction at the same
mastectomy surgersparing or nipple sparing??? Then I wonder .. Is this all going to be an un-Godly amount of surgery time (hours)???
I know that a lot of Hodgkins survivors have gone to follow-up clinics (ex: Dr. Steven
Hancock at Stanford and I think I remember another late effects clinic in
Ohio?? Regardless ... how do i go about finding the PERFECT pair of doctors to
work on me?? I am SO confused and have so much on my plate that I don't even
know which way to turn.
Any and all suggestions and recommendations will be GREATLY appreciated. I
am 46 years old ... was 18 when I had the HD and radiation. I am sooo very
scared and don't know what to do ... other than take the high recommendation to
go the double mast. route. I live in Knoxville, Tennessee ... I would love to
not have to travel BUT if that is what is recommended and have done so
yourselves ... I'm all in. I just want a good recovery and excellent
PLEASE HELP ME ... I AM terrified!!! Thanks so much and I love you ALL for
being here on this list exactly for these situations!!! I look SOOO forward
to hearing some responses.
HD IIA - 1984
DCIS right breast April 2011
DCIS right breast June 2012
Edited by Mods to remove personal information.
Jun 23, 2012 04:05 AM debshipshape wrote:
I was treated at Stanford in 1981 and have been in touch with Steven Hancock about my recent Stage 1 dx. I was able to do a lumpectomy followed by brachytherapy even though I had mantle radiation 31 years ago. They are now doing more cases of repeat radiation on HD Survivors. You can call Stanford Radiation Oncology and ask for Dr. Hancock to call you back. He is very helpful.
It was and remains a hard decision not to have a Mastectomy. I am still unsure knowing that the next time it comes up (hope not) I will have to make that choice. For me, it was a way to buy time. My cancer was small (4 mm), yours is DCIS, not technically cancer from what I understand. I am almost 3 months from surgery, 2 months from treatment. I will meet with my oncologist next month and look again at the options. It is all what kind of risk you are comfortable living with.
It sucks but there is support and you do not need to rush. Take your time and feel comfortable with your choices.
Good luck xoxxo Deb
Jun 23, 2012 04:15 AM DeborahC wrote:
Hi Gaye, It is hard knowing exactly what to do with our previously radiated skin. I was advised not to do skin/nipple sparing as my tumor was close to the nipple. I worried about the long surgery, my clotting history, and my skin with any kind of flap surgery. I chose the tissue expanders. Of course, I then worried about how far my skin would stretch with expanders. I am now "filled up" and the skin looks pretty good. I will exchange for implants in a few months. I don't know much about it - but if you could do skin sparing and go straight to implants that would probably not be a long surgery. You may want to search these boards and read about the center in New Orleans (people seem to love it) if you want to travel and have a tricky reconstruction. I am 50 and 20 years out from my radiation.