BC Dx and Hodgkin's Disease Radiation Treatment

olivieri

missde3,

Thank you so much for your response.  Was your BC disccovered during a routine mamogram?Besides this BC diagnosis I also had a  complete hysterectomy last June 17 .  I had a cyst on my ovaries for years which kept growing and growing but my gyno assured me that once I reached menopause it would go away.  With my luck this cyst degenerated and I ended up in emergency with severe pain last March.  It took from March till June to schedule the hysterectomy and I spent these 3 months in severe pain .   This was my first surgery and I was petrified especially since there was a possibility that a malignacy could be discovered .  My gyno was obliged to remove all my reproductive organs since the dead tissue from the cyst destroyed everything.  Luckily all the tissue was benign and I was so so  grateful and relieved and recovered from the surgery very well.  I was only supposed to go for my mamo next Jan but I decided to go in August since I was still off work.  I was in such shock when this malignant lesion was detected and am still having a hard time accepting this. The thought of having a BLM is just consuming me and not because I am a vain person.  I am just so afraid to go through another major surgery.    I would love to know how your BLM surgery and recovery went.  

Thanks so much .   

missde3

olivieri,

So sorry about the hysterectomy!  What an unfortunate thing to go thru.  I'm still pre-menopausal.  They wanted to put me on the Tamoxifen.  I'm not taking it.  They discussed removing or shutting down my ovaries.  Not doing that either. 

I saw my radiation oncologist every year for the past 20 years.  Through the years he has always told me that I was at a very high risk for developing breast cancer - I just never thought it would happen to me - so since the age of 40, I have been getting annual mammos. I always thought that if I got it, I would die from it.  I don't know why I thought this.  In 2007, he recomended an MRI then 6 months later a mammo, then 6 months later the MRI, etc.  I didn't get it in 2007.  I was due to see him in Nov of 2008 but had other surgery, scheduled his appt in early Jan and for some reason they didn't have me on their schedule so I saw him Feb 2009.  I was going to have a breast lift in May since I had lost over 100 pounds and wanted the boobies to look more normal so I asked him since I was due for my mammo in May, should I have it before the lift or after?  He said - get an MRI since my risk was so high and MRIs show different things than mammos.  Had the MRI, showed 2 spots in the left that looked bad, 1 in the right that was a bad.  Had an ultrasound - didn't show ANYTHING!  Radiologist said - let's do the mammo.  It showed 1 spot on the left.  They said - biopsy.  Came back as DCIS.  Saw surgeon, he said no rads because I already had them plus the 2nd spot wasn't biopsied.  So, they put me up in  front of the hospital tumor board and the consensus was - mastectomy.  I then talked to everyone in my family, especially my husband and we decided I needed to do both.  Since all the docs, nurses, surgeons, p.a's agreed it was caused by the rads,  I knew it was just a matter of time before it showed up in the other breast.  But, it was my decision.  No one wanted to re-rad me.  I didn't want the rads either.  I have to say, in truth, I cried from the day of possibily having cancer in March, then everyday when I was told the diagnosis in April then for 2 months after the surgery. So, both spots in the left were cancer so I would have needed the mammo anyway because too much breast tissue would have to come out.  The right breast had 6 things and 5 of them are possibly pre-cancerous. Am I vain?  Sure, we all are to some extent.  I knew the BLM was going to be a major adjustment for me.  I had just lost all that weight and was feeling like I liked what I saw, then - WHAM!  My sense of self changed again.  I still have the tissue expanders in - I'm waiting for the availability of the implants I want.  The recovery was OK.  I don't have any nipples, either, I have to wear a sports bra 24/7 and there is no feeling whatsoever.  Chances are, no feeling will come back.  i hit things with them and and don't feel it.   Would I do it again?  Yes.  Do I like it?  No.  But, I know, for me, this was the right thing to do.  Two months after the surgery, I had my' Aha' moment when I got up one day and didn't cry.  That's when I knew - I was relieved.  I wouldn't have to wait for the other shoe to drop.  I was going to be ok.  It's so personal.  It really is.  But, I'm here if you need any other info.  But - what type of cancer did you have and what stage?  Good luck!

Denise

olivieri

Hi Denise,

Wow you lost so much weight .That is excellent  Congratulations! I am so sorry that you had to go through all of this again as well  and am happy to hear that you had your AHA moment. That gives me lots of encouragement.   I still see my oncologist every year as well and I am seeing her for my annual appointment on Monday and I guess she will give me her opinion about the RAD that I received and if I could do this again.  My surgeon seems to think it would be OK but somehow deep down I know that I will have to go the masectomy route. I mentionned to my surgeon that maybe I should consider having a masectomy instead of lumpectomy because of my history but he thought it was pretty drastic .  If  I do not get clear margins however I will pursue the mastecomy option .  Right now I still have to wait for my final pathology .  Apparantly the biopsy I had did not give any details about the stage and type of cancer so I have to wait and wait and wait and this unknown is driving me crazy.  I was told on Sept. 30 that the lesion was malignant and my lumpectomy was not till Nov. 9.  I went crazy during this period walking around with abnormal cells in my body.  I was somewhat relieved after Nov. 9th at least knowing that the malignancy was removed. I have to wait another 3 weeks to get my final pathology report.  I can't believe it takes so long. I can't even believe I am managing to go on day by day and almost 2 weeks have passed.

During my Hodgkins days I did really really well with the treatment and had lots of support from my family and friends and everything happened so fast and especially since I was well I really didn't have time to think.  Although I bought a wig I didn't even loose my hair during the chemo.   I  was off work for about 11 months and honestly I was out and about every day and have great memories of this time off.  I have been fealing great since last March and never really thought about cancer again   but now this just pushed me off the edge and I am having difficulty .  I  have been in a state of shock since Sept. 8th when they called me to tell me that they detected an abnormality in my mamogram.  It is now 2 months later and I still do not have the final results. This is taking way too long .  I too have been crying every single day since Sept. 8th and I am trying to be strong for my husband and 3 children. I have a daughter 23, son 22, and daugher 20 and they are all in university and  living at home so this keeps me busy.  My husband , children and 3 co workers are the only ones that know about this BC and what I am going through.  I have not told my parents or any of my close friends and family.  I just can't handle people calling me eveyday and asking about me and I know everyone means well and I appreciate their calls but this time around I just can't handle it .  I seem to do better relating to people that have experienced this  cancer ordeal. Thank you so much for your input and listening to me and I will keep you posted as soon as I have received my final pathology.

Sylvia  

missde3

Hey Sylvia - that was an extremely long time between mammo and biopsy!  I had mine the week after my mammo.  Surgery was a few weeks after that.  Pathology only took a week or two.  At least you still see your onc so get another opinion there.  I couldn't talk to anybody the 1st week after the diagnosis.  Just couldn't.  It was so hard to talk to anybody.  My husband made the calls.  He eventually burnt out.  Then he stopped calliong people.  I don't understand why it took so long for your biopsy, tho.  You will hopefully hear your pathology results soon.  As I said - take your time.  It's an extremely persoanl decision.  I, too have 3 kids - son - Christopher, son - Jesse and daughter and son-in-law - Nikki and Jamie.  All are adults.  Jesse moved back from Florida last year.  The other 2 don't live at home.  I know how you're floating in and out of pain and life seems surreal.  It took a while before I could shake that 'doom' feeling.  It seems to me that only others in our shoes know what we are truly feeling.  It's not just the BC - it's the HL and all that comes with it.  It's a hit to our feelings of security.  Keep in touch!

Denise

TennesseeMichele

Ladies, I thought everyone might be interested in another thread.  I think it's called "multiple cancer survivors."

dstampone

Hi Nadine,

Thanks for your post.  I to had hodgkins disease stage 1 when I was 17 years old.  I had a month of radiation treatment.  I begin regular mammogram screenings at age 35.  I was always told about the increased risk of breast cancer however  I am upset with myself for not asking more questions or seeking preventative measures.  A few months ago I went for my mammogram and a few days later was called back for more pics and a biopsy.  I am 39 years old and have been cancer free for 22 years.  I lead a very healthy lifestyle and was probably in the best shape of my life so it was a shock to me when I was diagosed with BC.  Luckily it was caught very early.  I had DCIS with a microinvasion in my left breast.  I chose to have both breast removed and am now on tamoxifen (which I am a little nervous about).  I don't want to treat one type of cancer and cause another.  If you have any info or websites that you can pass along that would be great.  4 months before my breast surgery, I also had half my thyroid removed due to a cyst - however everything was fine in that regard.  Thanks again for your post,

Donna

missde3

dstampone:  i, too had 3 tiny little spots of IDC.  .15 cm and .3 cm.  one onc said no chemo but was pushing the tam.  i am not on it.  was too afraid to go on.  i have looked into alternatives and am considering bioidentical progesterone.  i will be seeing a naturopath to determine how much.  my surgeon agrees with no tam and my onc says she agrees 80%.  i haven't discussed the bio progesterone with them.  there are threads on here discussing it.  i also read dr. lee's book and suzanne somers book.  very interesting reads.  good luck!

Denise

Lucitarn

Hello everyone, I also had HD stage 1V at the age of 28 . Did not have Radiation only 8 treatments  of CHOP.I have read that some of us had Rad other not but somehow we still got BC.My mastectomy was on Oct 7 2009 due to Extensive DSIC,will see my onc next week about starting on Femara. Was a total shock because I did not feel any lumps had 2 negative Mammo,Negative MRI ,thank to my BS that decided to take one step further and do an exploratory on my breast to determine my "leaking breast" we found out it was DCIS.I have no history of family BC or HD.

missde3

hope everyone has a great holday and of course, a healthy, happy new year!!!  

Lucitarn - how did your onc visit go?

7timewinner

Welcome to everyone new! Been a busy holiday season already

Speaking of which, here's wishing everyone a healthy and joyous holiday and New Year! 

Peace and blessings to all,

Nadine

mimi1964

Hi Everyone!  I haven't been on in a while.  I have started my Radiation treatments and received # 8 today out of 38 treatments.  So far everything is going well.  I see the Rad Onc every Friday for a check up during the treatments.  I will see my Medical Onc again on Feb. 23rd and we will discuss at that time about starting an AI inhibitor ( I guess) or Tamox.  I have to say I am not looking forward to that part of the treatment any more than I was starting the Rads the only good thing is Rads will be over in 2 months and the oral drugs have to be taken for 5 yrs.  :=(  Of course it is great that we have treatment for BC!!!

Merry Christmas to all of you!!!

Blessings

Renee

NotAgainOnly27

WOW! I can't believe how many women have had the same issues. My name is Liz and I just turned 29 last week (I never thought I'd live this long). I was diagnosed with hogkins at age 12 treated with MOPP, ABVD and radiation to the chest. At 26 they saw a small mass in my breast that the doctors wanted to watch and I demanded a biopsy. A biopsy was done on my birthday December of 07. I thought I was clear when I didn't hear back within a week. Then I went for my follow up January 2nd 2008. Diagnosed with stage 0 DCIS. The doctors said they could do a lumpectomy and clear the margins, so I decided to do some research. I found a study done at the University of Pennsylvania (the following is what I recall) that found 86% of adolescence treated in the 80's to early 90's got breat cancer 15 years after treatment. I talked to my surgeon and she agreed that a double mastectomy was probably in my best intrest. Approximately 2 months later I had a double mastectomy. It came back as  Invasive Carcinoma Breast Cancer. I had 5 tumors in 3 separate quadrants. ER(-) PR (-) & Her2(+). I was told I was not a candidate for radiation due to the massive amounts I had as a child. So chemo and Herceptin it was. I finished chemo in September of 08 and they stopped the Herceptin in January after I begun to get excruciating headaches. In December 08 I had 8 masses come up over night in my thyroid. My thyroid and the masses were removed in September of 09 and I was diagnosed with thyroid cancer (once again they don't want to give anymore radiation). So here I am now 32 operations later and amazed to find that there are so many women out there having the same situations. Curious to know if any of you have had the following since treatment of hodgkins and/or breast cancer (as I have) asthma, arthritis, degenerative joint disease, random unexplainable pains throughout your body, low blood pressure and fast pulse, excessive weight gain, excruciating headaches (like someone hit you in the head with a baseball bat)? Sorry for the list but doctors look at me like I'm crazy when I try to explain all the problems I have. Just curious if anyone else has had the same. I look forward to hearing from all of you! Until then, may God Bless each and everyone of you!

mimi1964

Liz - I haven't had any probs with asthma, athritis, or DJD, but I have had low blood pressures for most of my life (I usually run a B/P of 100/ 60-70 and my pulse is usually over 100).  I started having really bad headaches about 3-4 yrs after my treatments were completed, but they escalated to migraines when I was about 23 ( I was dx at 16 completed txts when I was 17 and I only had chemo).  I have also had thyroid probs, but it came up and a cold nodule on the left lobe after I had my son and it was benign after they removed that 1/2 of it.  They said it was not unusual for that to happen after a pregnancy especially with a male child, so I never really thought much about it.  The biggest thing I've had is my feet, legs and hands swell... sometimes my legs have 2-3+ pitting edema for no reason and my feet stay cold all the time unless I'm out in the heat with sandals on.  I was cancer free for 27 yrs. so no one was anymore surprised that I when I was dx with Breast cancer.  I didnt have a clue not even an idea, I just went in for a regular mammo.  My surgeon didn't recommend having a mastectomy based on past history, he said only that he could save my breast.  I really wish I had of had both breasts removed at times to help decrease the risk of reoccurrence.  Now I will only worry more... and I can honestly say that the breast that I had the Lumpectomy in and I'm having radiation in stays sore all the time.

God Bless you...Please P.M. me if you ever want to talk.

Renee

TennesseeMichele

I wonder about my choice of lumpectomy instead of radiation too, Renee.  I just want to put my head in the sand and not worry or make any more decisions.

NotAgain, I have low blood pressure and a fast pulse, but I've always thought it was because I have a heart murmur (which used to cause sharp pains in my heart when I was younger but I rarely have symptoms anymore).

I remember when I was diagnosed with HD my onc told me that my brother had a much higher chance of developing HD too.  (He hasn't.)  I wonder if that goes for my children, too.

Michele

NotAgainOnly27

Michele I too have a heart murmor and chest pain to go along with the low blood pressure and fast pulse. I had 1 murmor that I was born with and after extensive testing for the chest pain they discovered I have two valves in my heart that leak. I was told by my cardiologist that they are finding that to be a side effect from the chemo I received for hodgkins.

 As for having a double mastectomy at the age of 27 I have to say was not easy. I had only been married for 2 years and had a 1 year old daughter. I will say in no shape or form do I regret having the mastectomy. I've heard several oncologist say they don't think it's neccesary, but as someone else had mentioned, the more I learn the more I realize how much they don't know. After having talked to many women who have had relatives/friends that chose to have a lumpectomy only to have a recurrence years later I personally didn't feel comfortable with a lumpectomy especially after finding the study that showed 86% of adolescence treated for hodgkins in the 80's and early 90's were diagnosed with breast cancer 15 years post treament ( I was diagnosed 14 1/2 years after treatment). I know the difference between finding cancer during stage 1 and 4 and with having a baby I didn't want to take that risk. It was the right decision for me.

I will say it has not been easy having a double mastectomy and I definately wish I would have been able to keep my natural ones. However I would not change the decision I made. Increasing the chance to be here for my daughter far surpasses the desire for natural breast and my being vain. For me it just wasn't a risk I was willing to take.  

Hoolianama0508

Hi everyone, I was diagnosed in 1987 with Hodgkin's Disease and had chemo (ABVD) and "sandwich" radiation to my chest, back and neck. You can imagine my disappointment and horror at being diagnosed 22 years later with BC.

I finished my Adryomycin/Cytoxin & Taxol chemo session in October 2009 and completed my Bilateral Mastectomy with tissue expanders on December 9, 2009. 

I drew strength from my previous experience however I was depressed for a good few months. This forum gave me the outlet I needed to ask questions and touch base with great women who have walked this path before me.

I send out love and encouragement to all on this thread. Hope 2010 will grant us perfect health.

Hoolianama0508

P.S. I will begin radiation sometime in Jan/February.

lizcola

Wow, I feel like I've found my way home with this thread.

4/96 - DX large cell diffuse NHL, treated with CHOP & chest radiation (not mantle), age 18

9/28/07 - DX thyroid cancer, thyroid removed & RAI, age 29

10/28/08 - DX 3mm DCIS, age 30 (was told by my rad onc that I was "right on schedule")

mimi1964

Welcome lizcola and Hoolianama - Sorry that we all are here.

I can't believe the number of people that have had Hodgkins and are now  being dx with Breast Cancer.  I guess I got lucky in that I was free from cancer for 27yrs.  I recently questioned my mom about what stage my Hodgkins was and it was stage 3b (I remembered it was pretty bad and they weren't even sure I would make it at one point).  I also asked her why I didn't have chemo (I blocked a lot of that out because I was so sick and just chose not to remember).  She said that my Onc said the chemo would take care of it.  He was the head of Oncology at the University of Alabama in Birmingham Hospital.  She still can't remember what chemo I took... I do remember one of the drugs was Cytoxin (I think that is one of the pretty standard chemo drugs and of course the dreaded Prednisone in massive doses).  

Tennessee Michelle - I was never remember them telling my mom or me that me having Hodgkins increased the risk of my brother or sister getting it.  The only thing they told me was because of the massive doses of chemo i would get that I probably would never be able to have kids and I would lose my hair.  Guess what... I didn't lose my hair (it got a little thin in one spot where I had a scar already) and I actually got pregnant about 4 months after chemo stopped, but lost the baby because of the drugs still in my system.  I went on to have 2 more beautiful children.  :=)  my children are well, so are my grandchildren and my brother and sister never got sick. The head of Oncology told us that Hodgkins Disease is a virus.  

I know it's one that I would never wish on any enemy I had.  

Hope everyone has a great and healthy 2010 and that it is cancer free.  I have completed 15 radiaton treatments and have 23 more to go.  Yeah!!!!!

 Renee

Kiki1965

Hello,

 I had HD in 1991 at age 27.  ABVD Therapy w/o any radiation.  Just told I have ILC in one breast and LCIS in the other.  Still waiting to hear about the node biopsy. 

mimi1964

Sorry to hear that Kiki, from everything that I've been reading and researching I think it is pretty typical that many women that have had Hodgkins are getting Breast Cancer or have gotten it.  I will be praying that your nodes are negative.

Renee

7timewinner

Renee...your onc told you that HD is a virus???? That is the first I've ever heard that one. I'll have to look into that....got me curious.

Welcome(?) to the new folks here. Yeah, sadly, no surprise to find so many of us here.

Kiki (and everyone)...IF your nodes are positive, please try not to let that bother you. I had 15/17 positive nodes. Folks get really scared about node involvement and honestly, it just changes the way your onc approaches treatment. It's OK. It just means the nodes were doing their job

Peace and blessings~

Nadine

mimi1964

Nadine - who knows that was years ago back in the 80's alot has changed, but that is essentially what he said.

Renee

NotAgainOnly27

Has anyones children had any medical problems? Just curious my daughter is 3.

mimi1964

NotAgainOnly27- No not at this time my children, who are 23 and 20 and my sister's children who are 22 and 19 and my brother's son, who is 17 all are well.  No medical problems to speak of.  We all have allergies and sinus problems and my daughter has Asthma, but my dad had that as a child.  I don't even have Asthma myself, my sister does.  LOL!  Here's to hoping all of our children and grandchildren stay well.  I can tell you that as soon as I was dx with BC that my 20 yr old daughter's OB/GYN did a breast exam on her to check for any masses just to be on the safe side and probably will follow her more closely now than ever.  I would expect she will start doing her mammo's when she turns 30. 

TennesseeMichele

NotAgain,

No, no medical problems for my kids either.

charua

Hey ladies. I wanted to update on my situation. They found ALH back in September. With the findings and my increased risk from Hodgkin's, I decided to do a BPM with recon. I am 32 so I figured the stress from worrying about it would be too much for me with 2 little ones running around.

I am scheduled to do it on Feb 3rd. I am nervous they will find cancer when they go in since my mammo/MRI was in September so there was a 4 1/2 wait between my last scan and the mastectomy.

Thinking of all of you! 

missde3

I have a son who was dx with HL when he was 18.  I was 28 at the time of my diagnosis.  He had chemo and is now 34 years old.  I had rads.   There is was no medical documentation of a mother/son Hodgkins link.  It's mostly between siblings but usually identical twins but even then it's rare.  It was a very disheartening thing to have him go through this 6 years after me.  I was told that a virus could possibly be the trigger for HL but not the 'cause'.  I was told they think that a virus hits your system and your system go awry with trying to handle it.  There seems to be a link with Epstein - Barr or mono.  Also, if your tonsils were removed as a child, you're at a higher risk.  I had mine out at age 11 and my son at age 5.  Remember, lymphoma is a cancer of the very same system that's supposed to protect us.  My two other kids - son 28 and daughter 26 haven't had anything like this.  I do tell them to check themselves for lumps because if my son and I both got this, I assume their risk might be higher than the average.

Welcome to all you newbies!

Health to all!

mimi1964

missde3 - sorry to hear about your son, but glad to hear he's doing well.

missde3

mimi1964 - did you have rads for HL?