Hodgkins first now Breast Cancer

reny

Hi All - I'm new at this site but glad I found it! I had HL 30 years ago (at 35) and just diagnosed with breast cancer. Due to the "mega dose radiation" rec'd then, I am not able to get any more RT. My dr called me and said that my only option would be a bilateral mast. Naturally I'm worried, but fine with what has to be done. I do want to be reconstructed, have an appt to discuss and ask questions tomorrow. Any suggestions out there?

StaceyPMD1121

Welcome & Sorry we had to meet like this


Hi Reny,

I am new here and just wanted to welcome you. I had a lumpectomy on May 4th, but it could have turned into masectomy. Here's what I know about reconstruction straight from my "Be a Survivor-Your Guide to Breast Cancer Treatment 5th Ed. by Dr. Vladimir Lange. Reconstruction with implants made of silicone filled with saline or silicone gel. The implant is placed under the chest muscle. You could also have a temporary chest expander implanted which is slowly filled with saline for 3-6 months. Later, the expander is removed and the permancent implant is placed. Reconstruction with your own tissues which includes a TRAM,Lat,DIEP,SIEP, or IGAP flap. TRAM tissue from abdomen is pulled under the skin to the breast area and includes a tummy tuck.(My choice if I have to do a masectomy). Lat flap incision under shoulder blade tunnel created under the skin to pull a portion of the shoulder blade muscle,fat and skin coverin it to the breast area. DIEP flap uses fat and skin from abdomen with a tummy tuck. IGAP flap uses the artery from buttocks and a portion of buttocks tissue. You will probably be referred to a plastic surgeon, who can discuss all of your options I hope this helps you. My prayers are with you for your reconstruction and quick healing. My other pink sisters, who have actually gone through the surgery will follow me to tell you there experiences.

Peace, Blessings, & Hugs,

Stacey

salls41

Chose reconstruction
I had my bi lateral mast. on May 20, with immediate reconstruction. I am doing the expanders to be slowly filled then replaced. So far my healing is going well. I originally had 4 drains, now down to two.I found alot of helpful information from the members of this board and was so very accurate on what I could expect. Sorry you have to be here, but you have come to the right place for answers ans support!
Hugs to you!
Sandy

Monicalynn

salls41 said:

Chose reconstruction
I had my bi lateral mast. on May 20, with immediate reconstruction. I am doing the expanders to be slowly filled then replaced. So far my healing is going well. I originally had 4 drains, now down to two.I found alot of helpful information from the members of this board and was so very accurate on what I could expect. Sorry you have to be here, but you have come to the right place for answers ans support!
Hugs to you!
Sandy

I am 41 and opted for a delayed reconstruction so I could mull over the options, now I am considering just going with the prothstetic. I never was into low cut shirts or tight shirts so it's not a huge deal for me. Kind of odd being lopsided but since I chose delayed reconstruction it will take at least two more surgeries now matter what I pick and not sure I really want two more surgeries.

Gabe N Abby Mom

I'm sorry you have the need
I'm sorry you have the need to find us, but this is a fabulous group. The people here have saved me many times. I have found them to be supportive, honest, caring...truly lovely people.

I had a bilateral in Jan of 2011, like you it was the only choice I had. However, I'm not eligible for reconstruction so I don't have any comments there. At this point, the advice I have is write down all your questions to make sure they get answered...take notes when the doc answers...bring someone to be a second set of ears for you (there is so much info it is easy to miss something)...find out how to best ask questions that might come up after you leave the appointment.

You might also want to search through previous posts here. The subject of mastectomies and reconstruction comes up with some frequency.

Hugs,

Linda

jnl

salls41 said:

Chose reconstruction
I had my bi lateral mast. on May 20, with immediate reconstruction. I am doing the expanders to be slowly filled then replaced. So far my healing is going well. I originally had 4 drains, now down to two.I found alot of helpful information from the members of this board and was so very accurate on what I could expect. Sorry you have to be here, but you have come to the right place for answers ans support!
Hugs to you!
Sandy

Just welcoming you to this
Just welcoming you to this great site and wishing you the best with your surgery.


Hugs, Leeza

eihtak

Welcome
Hi, and welcome to our family. Like all families we don't ask to be part of them its just the way life goes....the people here are genuinely caring and offer great advice! I was treated for Anal cancer with chemo/rad about one year ago and then diagnosed with secretory carcinoma of the breast this past March. It is a rare slow growing cancer often undetected for several years. I had a double mastectomy with no reconstruction at this time as I am still dealing with some nasty long term side effects from the AC, but may consider it in the future. As for now I am finding myself comfortable without which surprised me. I am small framed and usually just wear a lightly padded sports bra. There are a lot of women here who have had great luck with their reconstruction so I'm sure you'll hear some helpful tips. Good luck, keep us posted, we will be waiting to hear how you are doing. As always, all in my prayers.

cathyp

eihtak said:

Welcome
Hi, and welcome to our family. Like all families we don't ask to be part of them its just the way life goes....the people here are genuinely caring and offer great advice! I was treated for Anal cancer with chemo/rad about one year ago and then diagnosed with secretory carcinoma of the breast this past March. It is a rare slow growing cancer often undetected for several years. I had a double mastectomy with no reconstruction at this time as I am still dealing with some nasty long term side effects from the AC, but may consider it in the future. As for now I am finding myself comfortable without which surprised me. I am small framed and usually just wear a lightly padded sports bra. There are a lot of women here who have had great luck with their reconstruction so I'm sure you'll hear some helpful tips. Good luck, keep us posted, we will be waiting to hear how you are doing. As always, all in my prayers.

Fellow Hodgkins Survivor
Hi Reny,

I too had Hodgkins Lymphoma in 1989 and 1994. In 2007 I was dx'd with IDC from the radiation treatments.
The only option was a double mastectomy (they found LCIS in the "good" breast too) which I was totaly fine with. I had wanted a prophylactic mx before but didn't push hard enough for it. So, at the time, my docs urged me to delay reconstruction. This was because they were unsure how my mx scars would heal considering the heavy doses of rads we received. Also, if there was a problem, it would delay chemo if it was recommended. Finally, they thought it was just a good idea to avoid another major surgery. I had bleomycin (part of ABVD) and we have to be careful with supplemental oxygen during op procedures. Also, if you have damage to your heart from the radiation and chemo another major surgery is taxing. Now 4.5 years later, I don't think I will have reconstruction.
I was 47 at the time and a DD on a very small frame. For me, I rather enjoy not lugging them around anymore! Not having to go for breat MRI's is a plus for me too. I used to wear prostetics but now a small padded sports bra. The only time I feel a little funny about it is on the beach, which is only 1 week a year!
Sounds like your docs are knowledgable about you as a HL patient and how unique your situation is. Best of luck on whatever you decide.
Cathy

ChristineCP

Hi Reny
I too had HL 8 years ago, and have just had a left mastectomy and reconstruction (TRAM flap) for DCIS. Its a huge operation, and I'm nearly 3 weeks post-op but healing well, although still slow and sore - esp in the abdomen - where the tissue was taken from - its as tight as a drum. There is a lot of discomfort in the first week - and pain is controlled by opiates in the first few days. Personally I felt a lot better when these were stopped - they made me nauseous.
My issue at the moment is to decide what secondary treatment to have - Chemo and Tamoxifen or just hormone treatment (Tamoxifen and some other hormone drug). Its all complicated by the fact that I've had chemo before. I just had a terrifying consultation with an oncologist who outlined all the chemo side effects - and how much more likely it would be that I'd have them (due to previous chemo). Consequently my head is in a spin and I have a week to decide what to do.

On the original question, I had a reconstruction (with the mastectomy) to cut out having another op further down the track (hate hospitals!). It was tough, but I'm glad I did it.

Good luck
C x

Bar_B

New here, too...
but my two cents... I had double mastectomy with reconstruction surgery at the same time. It was a difficult decision, but two years later glad I got it done all at once. I chose this as I have TNBC and lowered the rate of recurrance as well as no radiation needed.