BC Dx and Hodgkin's Disease Radiation Treatment

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

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

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.

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

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

How was your heart problem diagnosed?



Thanks Tami

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

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.

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?

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

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

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  

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 <>< 

I will try and keep everyone posted

Thanks for the information!

Jami

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