BC Dx and Hodgkin's Disease Radiation Treatment

debshipshape

Hello,

 I had Hodgkins Disease Stage IIIA in 1981 at the age of 26. I was treated with total nodular radiation, 4400 rads to the mantle. I just was diagnosed with Breast Cancer in my right breast. I had a core needle biopsy which seems to indicate Stage 1 ER+Pr+Her2-. I spoke with Stanford Radiology (where I was treated in 1981) and my Breast Surgeon who both seem to believe that it may be possible to have a lumpectomy and radiation after 30 years. I am scheduled to talk with the radiation oncology department before the lumpectomy to see if this is possible. I have been debating about a double mastectomy because of the risks. After my visit with my Surgeon I thought well maybe we could try the less is more approach and see what that looks like. At the very least it would give me a clearer diagnosis because more tissue would be removed in the lumpectomy. Then I could still opt for a mastectomy. 

 Any feedback would be greatly appreciated.

 Thanks in advance,

 Deb

ColdenMom

Hello Deb,

I was diagnosed with Stage 1 ER- PR+ Her2- BC on 12/6/11. I too had Hodgkins stage II B when I was 25 and underwent mantle radiation as well. Although I was given an option of a lumpectomy I decided with a bilateral mastectomy on January 17th. I could not undergo additional radiation because it's only been 9 years since my HD diagnosis. I started chemo on 2/23 and will need 4 treatments of TC. Overall I'm doing well from both surgery and my first treatment. I have had some SE's but minimal.



I decided to go with the mastectomy because of my fear of BC showing up on my right side years from now. I am completely at peace with my decision.



Take care! These forums have been great for gathering experiences, hearing others stories and being able to just talk this out.



Keep us posted on what you decide!



Kelly



Kelly

me_4givn

Hey Kelly and All,

I am stage 2B but that is just a guess by Onc due to all lymph nodes removed under my right armpit from relapse #2 HD. I have had relapse HD x3, thyroid cancer (from radiation), and now right breast cancer.......yep that makes me a 5 time survivor after this (crazy!). I am 45 years old and still fighting like mad to  live the life God has given me and teach others as I go Yes, chemo makes healing L O N G go see your doc. I am so sorry I have taken a while to get back here. I am learning new ways to make happy thoughts and actions when going through the fire. One way is opening up to trusted people about how I am feeling and setting my mind on truth when ugly thoughts creep in my mind. Another fun diversion has been pulling weeds. I dislike this chore but I find it gets my mind of my condition and helps me focus on the beauty that will follow these ugly little buggers! TV is not my cup of tea so, read! Bible study's are my favorite One new issue I am having is bone pain from the taxol but I am making it through and remind myself, "this is not a forever thing." One day at a time will help out in a huge way.

I have the flu like feelings on day 3 and sometimes day 4. I get the runs now on day of chemo and day 2 then it stops. Left fingers and palm still numb, nausea is gone with meds (yippy), bone aches in hips and thighs, no hair (go check out vogue wigs, great prices and cute wigs and another diversion), rash to face comes and goes, and yes my tumors are gone-------Amazing!!

Overall, this is so much easier than HD treatment! I can say to others with great conviction, "You can do this!!!" Glad to hear your finished in April mine is not til May 17th.

Big Bald Hugs to all my Cancer sisters

Jami

me_4givn

Hello Deb,

Please check the American Cancer Society. They have lots of information on the subject. Also, there are different types of mastectomy's. lumpectomy, simple, and radical (some others). I am looking at skin and nipple sparing. If you do not have the genetic marker (make sure you are tested for this) then see about saving your skin. Talk to other and read about the different types of surgery's here under the topic of look up. I never thought about having "new breasts" but now I think great! Less bouncing on my horse, it's a plus!! Be strong and be aware of your weaknesses. They are both important to know. Live for today because tomorrow has enough worries of it's own!! I am sorry this is happening to all of us but it is what it is and now is a part of our history to learn and share.

 Jami

mimi1964

Jami good luck through chemo and stay strong.  Sending you gentle hugs and prayers for healing and quick recovery time. 

Renee

TamiCool

Hi Everyone,



I had HL stage IIA in 1986 at the age of 26. We were living in Chicago while my husband completed his orthodontic training. We had a 3 year old daughter when this happened. I had a spleenectomy and they moved my ovAries behind my uterus to protect them. I was treated with radiation for 6 weeks in the neck/chest area and 6 weeks in the chest/top of stomach area. My thyroid quit working 6 months later and I came down with shingles during Christmas of 1986. In 1989 i delivered a perfect baby boy. In 1991 I had a bowel obstruction from the scar tissue from the staging laparotomy, which was lucky, since they found a carcinoma lymphoma in my appendix. They removed part of the intestine to check to see if it had spread and it hadn't. No treatment other than surgery was required for this type of cancer.

I have been dealing with basal cell cancers since 2008. I have terrible breathing problems that are being treated with asthma medicines. I also feel like I have some kind of blockage in my throat which makes swallowing difficult. I suffer severely with GERD's and take prescription ant-acids twice daily. My heart has been bothering me since 2009. They think I might have a valve that is damaged. I do treadmill tests and some other tests. Just last week I had a biopsy on my left breast. They think I have breast cancer, but I won't know for sure until this Monday, April 3, 2012. I am just trying to wrap my head around this to be ready for bad news.

debshipshape

Hi Tami,

 Thanks for your post. We are sisters together in this battle. This is a great site to get support and information. Please keep us posted as to your results. I am scheduled for a lumpectomy on Thursday. I will then make my final decision on a MX.

Take care,

 Deb

TamiCool

Hi Deb,



Thanks for your kind note. I am on pins and needles until tomorrow. I am very interested in the treatment option you mentioned.



Take care,



Tami

debshipshape

Hi again Tami,

 You are in my prayers, fingers crossed, knock on wood!! It is hard not to hold your breath waiting for the news. I nearly lost my mind. We are ladies always waiting for the other shoe to drop, don't you agree. If you like you can email me directly at debshipshape@yahoo.com. I live in Oakland, CA not far from you. Are you also with Kaiser?

 Deb

TamiCool

Dear Deb,



You are sweet. I have a good cry, then I am laughing, then I feel numb.....I hate the stress of waiting. My daughter lives in Dublin and her husband is working Oakland. I have Blue Shield.



My 58 year old sister passed away last June from ovarian cancer. I flew to Houston to visit her and ended up staying a couple of months to help her and her family until she passed away. This has been a tough year. I haven't felt good for awhile, so I need to find out what is wrong.



Thanks for your kind words, I just can't talk about this yet with my sisters....it will kill them if it is cancer.



Tami

TamiCool

Hi all fighters,



I just want to thank you all for your posts. So many of us out there, who knew? Your information is comforting to read. I like to know what to expect and you are offering great advice from the battlefront. Good luck.

Fondly, Tami

TamiCool

How was your heart problem diagnosed?



Thanks Tami

TamiCool

Hi everyone,



My biopsy showed that I have invasive ductal carcinoma.

mimi1964

Aww Tami I really hate that for you I was so hoping it would be Benign.  O.k. now the balls in your court and you have decisions to make.  Prayers going up for you.  Much love and hugs to you and your family.  Be sure to ask a lot of questions. Take someone with you, take a tape recorder or someone or yourself that can keep notes of what was asked to review later.  Because rest assured you won't remember everything. 

Take Care and if you have any questions please don't hesitate to ask.

Renee

TamiCool

I am still in a daze. I have an appt for this Wed here in the little city of Redding, CA, but I wonder if I should been seen at a better facility.

DebC123

I'm there with you.  I finished treatement for HD in 1990 (I was 19 at the time and am now 41), and this week was diagnosed with inflammatory breast cancer in my right breast, and an unrelated, very early stage, Grade 1 tumor in the left. 

I'm going to start treatment (6 cycles of TC) on Monday, followed by surgery, then radiation.

Good luck to all of you out there going through something simlar.

TamiCool

What does TC mean?

TamiCool

What did you end up deciding what to do? I am scheduled for double mastectomy for May 23rd. Are you still doing lumpectomy and radiation? What about reconstruction?

debshipshape

Hello,

Just wanted to update on my lumpectomy and brachytherapy. I had a lumpectomy 3 weeks ago and they placed a balloon in my breast at the time of surgery. They took one sentinel node for  biopsy.

 A week later I received my pathology. The tumor was 4mm x 3 mm x 2mm of IDC. There was extensive DCIS, no lymph node involvement and clean margins. I was a candidate for brachytherapy which I was very relieved to hear.

 I had 5 days -- 2 times a day of radiation through the catheter and the balloon in my breast. It went well and I was thrilled to get the catheter and balloon taken out last Friday. I am tired and sore but healing well. I have full range of motion in my arm but nerve issues in my underarm and arm. It has gotten better and I hope it will continue to get better as the weeks go by. I am using a Chinese cream Ching Wan Hung every night. It really helps with the heat in the breast. It was recommended by a friend who had external beam radiation. It helped tremendously with the burn issues. My breast looks a bit pink but otherwise seems fine. 

 I am awaiting the results of my oncotype but my oncologist believes I will not need chemo at this point. We will see what happens. I am also considering Arimidex. Even with my higher risk factors Arimidex offers 2-4% decrease in possible occurrence or reoccurrence.

I plan to take 2 months off before starting anything else. I need to heal and have some fun. 

Take care,

 Deb

Jennt28

Hi there,



Although I did not have HD I have only very recently ie: this week, realised that what I did have (multiple diagnostic chest xrays every 4 months between the ages of 13 and 16 yrs back in the late 70's/early 80's for TB which in the end they decided I did not have - long story) is listed alongside HD treatment in multiple studies about increased incidence of breast cancer.



I did not know this back in December when I was diagnosed and chose lumpectomy, chemo and rads. When everyone (BS, MO, RO) was asking me questions no-one asked me about number of previous x-rays. I am now nearly finished chemo and have been very scared about rads and when I realised it would remind me of that horrible time in my life I got curious and went looking for info and was shocked to find that there is such strong evidence about this causing future BC.



I mentioned it to my MO at my appt yesterday but she was very non-concerned and obviously had no interest in looking into this for me. I have a RO appt in a couple of weeks and also a BS follow-up appt about the same time so will be discussing with both of them.



I am still very concerned about doing rads because I assume that by adding radiotherapy to the previous x-rays through my life I will be facing more of a risk of secondary cancer in my breast and lung than the average person. I also know that even if I now have a BMX they would normally want me to still do rads due to my positive node during the original surgery.



AAAARGH - this is such a mess. I assume that my mother (she is still alive, 84, we live in different countries and have had "issues" for decades) must have signed consent forms back in 1978 that should have spelt out the future risks, but I had no idea that I should have been getting regular breast checks from an early age! Here in Australia I am still 3 years under the age (50) when they ask women to start being checked so I'm only here because I found my tumour myself.



Not sure there's any advice any of you can give me, but it was sort of comforting to realise that there are other women here who might relate and be facing the same risks as me.



Jenn

Jennt28

Nadine - I have just noticed your post about non-melanoma cancers... I too have had several lesions removed from my upper torso over the past 10 years. Most recently I had a BCC removed from my upper arm... That was 3 years ago and then BC last December....



Jenn

djonas2309

Deb,

I am a 39 year old HD survivor of 20 years, currently undergoing chemotherapy (Abraxane) for IDC stage 2A. I also had a stent placed in my right coronary artery two years ago (at the origin) after discovering it was 99% blocked. The symptoms were not that obvious, so I hope all of our HD surviving sisters are getting checked.  

If you did end up choosing the lumpectomy with radiation, I am very interested in hearing how it is going for you. I am torn. My breast surgeon feels it unnecessary to have a prophylactic bilateral mastectomy and that reconstruction would interfere with tx for any future breast cancers (for which I am still at risk). I have a radiation oncologist who thinks that since it has been 20 years since my last radiation, that there is a good chance that it may be safe for me to have it again. But my medical oncologist is strongly against radiation and wants me to have the BM.

The research I can find on it is old (2000) but cites severe necrosis as a possible side effect. I suppose that I could always have the breast removed if there was long term damage, but I'm concerned about damaging my arm pit area too much. I'm desperately looking for brave souls who have chanced these virtually untreaded waters for advice.

Dawn

DeborahC

Dawn,

www.biomedcentral.com/content/pdf/bcr1310.pdf

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=70&abstractID=40535 

are the 2 articles I read about re-radiating after Hodgkin's.  None of my doctors were considering any additional radiation and they wanted me to do the UMX and then annual MRI's.  I chose the BMX.  I hope I don't have too much risk for future breast cancers  

What test helped you diagnose your heart problems?  I do need to find a cardiologist I suppose. Thanks, Deb

ps - why are there so many Deb's in this situation??

me_4givn

Hello Ladies,

I have not been good about logging in the last 2 months (working while going through chemo wiped me out!). I thought I would take a moment to catch up and check in. Well, I finished my chemo trial (last week). Yeah!! energy is coming back and my skin seems to be healing quickly. For those of you that are new here is a quick catch up. I was Dx with stage 2b IDC her2+breast cancer. I signed up for a clinical trial for Taxol, Herceptin, and Lapatinib. No radiation because of all the "total body radiation" I had with my hodgikin's (I had a life time amount 1992). I had spleenectomy with Hodgkin's, thyroidectomy from radiation for hodgkin's (carcinoma), hysterectomy from endometriosis (from radiation), and ABVD (first chemo go round with hodgkin's).

 In the trial the chemo is up front with the double mastectomy on the back of the process. I had nausea, diarrhea, rash to face, neuropathy to my hands and fingers (worse on the left than right). I had hand and foot rash that was worse on the soles of my feet. The worse part for me through the whole thing was the emotional roller coaster,brain fog, and the neuropathy in the left finger tips. I had started with nausea and was happy to see that resolved after the first month (I had medication that helped). Soon after, I started having diarrhea the day of chemo and the day after (sometimes I had it for three days). The rash to my face was like pimples to my nose, cheeks, and forehead (that was helped with sunscreen SPF >15). I was not able to sleep the night of chemo or the day after. My chemo was every Thursday and by Friday I was on edge and very talkative. The steroids were the cause of this emotional roller coaster ride.....so beware I went back to work two months ago because I was going crazy at home. This was a huge help for me. I think if I had kids in the house it would have helped. My double mastectomy is scheduled for the 25th of June. I am having skin sparing with expanders. I found that if I kept busy and found the energy to help other people I was not so down going through this hard process.

I will be taking Herceptin for one year (Jan.-Jan.) This is target specific and not chemo so hair will start growing back and no fatigue issues. I had a mediport placed for the chemo and will still have to have Herceptin via IV but will have the mediport removed with my mastectomy's because the mediport has been painful and get caught on everything (seat belt, bra strap, and knocked with hugs). The mediport was so helpful for chemo and labs. If you can, get one they really help  

Dawn, Deb, Tami, Jenn, Renee, Nadine and Kelly........Hang in there. Know you are prayed for and you all have support here. We are a strange bunch because we are not just cancer survivors but Continuing cancer survivors. I am so sorry you have had to go through cancer again but this difficult time helps us to help ourselves and others. I stand beside you holding hands through this web site as we walk down the cancer path together. I read everyone's story and it is comforting to know there are others in the same boat as I am in. 

How long was the healing process after mastectomy? Anyone have nipples/skin sparing?? Did your nipples nacros? Werer you told no showering for 2 weeks?? How was the pain? How long did the drains stay in? If you had this surgery months ago, do your new breast feel like they are yours? Did you have saline or silicone?

Big hug to you all.....find funny movies and laugh a lot it really does help

Jami  

DeborahC

Wow Jami, You have been through quite a lot.  You are right about the movies - that's all I did while recovering from mastectomy (I think I watched every Jack Nicholson comedy).  I did not have skin sparing - was not recommended.  I think recovery depends on the reconstruction you get (if any).  The mastectomy itself was easy.  The tissue expanders are what caused all the pain and made it hard to sleep.  I would say that it was 3 days of pain and laying around completely.  Since you had the splenectomy - I would say the recovery was way easier than that. After about 10 days I was out and about and driving.  I did not really shower until the drains were out (2 weeks).  Not a problem because I couldn't reach over my head to wash my hair anyway - did that in kitchen sink!  I won't have my implants for a few more months, so I still have these uncomfortable rock hard expanders.

me_4givn

Thanks for the quick reply!!! The doc was willing to give me skin and nipple sparing related to the PET scan results were all negative (YEAH!!) and my tumors were not near my nipples. I am hoping my nipples don't fall off (it happens). If it does I will deal with it but I would like to not have this issue too. Do you think going back to work in 4 weeks is crazy? People at work are telling me I'm nuts for wanting to return but I am NOT good at sitting on the couch (maybe after surgery I will, who knows). 

Hope your more comfortable real soon......Warm compress help (so I've been told).

Thank you for the information

Jami <>< 

DeborahC

Unless you have a very physically demanding job, returning at 4 weeks should be no problem.  I did a 3 mile cancer walk at 4 weeks and was only mildly sore. 

me_4givn

I will try and keep everyone posted

Thanks for the information!

Jami

me_4givn

Hi,

I have an update. I go in for my double mastectomy in the morning. I am a little nervous. I am praying and have a great support system helping me. I am loosing 6 of my finger nails. They turned black and hurt! Fast growing cells detached nail from bed. Happens a lot after Taxol. I am having nipple sparing with expanders. Hang in there all who are going through this ordeal yet again. I hope I will be able to post updates. Not sure what to expect. I hope my nipples don't fall off but if they do, I have backup part 2. The scar from expanders into new nipples.

Lots of hugs to you all,

Jami

me_4givn

Double Mastectomy went well. Pain is under-control with medication. Family is helping and seems to be doing well too. Will update later.

Take care!

Jami