BC Dx and Hodgkin's Disease Radiation Treatment

Hello I'm Jami,

I was diagnosed with Hodgkin's (HD) in 1992 as a young mother (25 years old). I know this seems older for HD but it tagged me and I went through mantel radiation, open abdominal lap with removal of spleen then a 2 year remission. Unfortunately, HD geared it's ugly head and I underwent lymphectomy  (all 26 under my right arm), chemo (ABVD) it almost killed me a few times (really!). I had a total hysterectomy in 2000 (sever endometriosis) and a thyroidectomy in 2002 with positive hurthle cells (carcinoma). I am gratefully for the hard journey because I was able to raise 2 amazing kids, go to nursing school, and live in two states with many  blessings inbetween (many!!!) About a month ago I found 2 masses and just had them biopsied. Found out I have infiltrating ductal carcinoma (IDC). I am told the radiation gave me this and I have done some investigating and find this is true. 

I just had my first appointment with the surgeon (she was the first line) here in Palm Springs. I am looking for support from others that have gone through this while offering help, prayers, and support too. I need to be able to find support and maybe I can offer information. My cells are Her2/neu and the coarse of action will be 3-6 mo chemo (Adriamycin?? Already did that) and Herceptin target therapy for 1 year. If the tumors respond, they will do a mastectomy in 3 months. Lastly to finish with Herceptin. I have the opportunity to be in a trail with Laptinip if the cancer is local to only my right breast. The U.S. uses Laptinip as a secondary drug if Herceptin does not work. They are trying to make Laptinip a first line target drug for the binding through the antigen of the Her2/neu cell. Doctor gave me a 10-30% chance of relaps because I am unstagable (anyone else in this boat??)

Looking for answers and wanting to help,

Jami <>< 

Jami,

I was diagnosed with HD at 25 as well, I was pregnant with our middle child as well. I did not have as many complications as it sounds you had but I did go through 7 months of chemo (ABVD) and 6 weeks of mantle radiation. On 12/6 I was diagnosed with IDC left side only during a routine mamo. I am 5 days out of a bilateral mastectomy. I'll receive the pathology report on Thursday the 26th from there we will know the next treatment.



My BS believes the IDC is from the radiation I received to treat the HD - so you're not alone. I read through everyone's stories on this board and actually felt better about this whole thing. Stay positive

and I wish you the best of luck.



Kelly

Nadine,

Hello.... I sent you a private message as well. It's a small world, I know your PS well. I'm doing okay...having a bit of a down evening. I went to Roswell today to have the bandages removed and the drains. Unfortunately I am still draining pretty good so they could not come out yet. I could not look today when the bandages came off either... I took a couple peeks tonight and got a bit sad. I know it's not the finished product but I was a little surprised to see myself regardless of all the pictures I've seen. The PS today said I looked great... His sense of great and mine are a little different I go on Thursday for the pathology report so I'll keep you posted. Thanks for asking!



Lisette and Jami - best of luck to you! My tumor was infiltrating/invasive as well I had a 1cm and 3mm spot on my left. My BS says he got them out during the surgery and was very pleased with the mastectomies.



Take care all,

Kelly

Lisette - it's all a little overwhelming I agree. I'm doing well overall I truly believe it was the waiting for the unknown that was the scariest. I saw my BS and PS today they both felt that my incisions looked great. They were able to spare some skin and both agreed that the TE's will fill nicely. My drains are still in, I was hoping to get rid of them, no such luck. I'll return on Monday to see how it goes. I also looked closer at my incisions today, they are horizontal almost center of where each breast was. It took me since Monday to be more comfortable looking, in time I'm sure I'll be more comfortable. As far as pain I've only been taking something at night because I get sore/ stiff. I was a belly sleeper so sleeping on an incline on my back is not super comfortable but I seem to be getting 3-4 consecutive hours of sleep.



I did get my pathology report today. I am grade 3 ER- PR weakly + and Her2 - with 0/5 nodes negative! They do however believe I should undergo chemo. I meet with the oncologist in two weeks.



Please take care and DO ask questions. I find these discussion boards to be very helpful and reassuring that we are not alone.



Kelly

Hi. I'm  glad I found this website.  I too had HD when I was 16.  I had a splenectomy and appendectomy along with mantle radiation and radiation to my abdomen for preventative measures.  I've been on thyroid medication since my teens and have undergone the yearly recommendations of getting mammograms and MRI's.  I'm now fabulous and 40:-)  Before the holidays, I had my first breast cancer scare.  I had to see a surgeon to do the biopsy since my breasts are extremely dense and small.  I had always known my risk was higher than the average woman, but was shocked to hear how high it really was!!  I was angry that my MD never really spelled out how high I was in the risk category.  I made the decision to have a nipple sparing double masectomy.  I've already talked to my PS and have my appt. with a general surgeon next week.  The PS said I could get implants the day of surgery w/out having to get expanders.  A lot of what I read has women doing expanders first then the implants later.  I was curious to know if anyone has had this done and how they made out.  My recovery time is estimated at 2 weeks.  Thanks!

Hi Ladies,

I had a call to schedule my surgery for February 15th, i couldn't do it..... I am nervous to put it off but really don't feel prepared.  Have decided on BMX with reconstruction, most likely with TE's but still have not discussed incisions with my BS and would really like to research NSM and direct to implant with alloderm.  Plus the photos my PS showed me really were not good in comparisson to the few others I have seen and this makes me nervous as he is suppose to be the best in town!  I guess I need to schedule another appt to discuss all this before I confirm the date.  I just really want to feel confident that I am making the best most informed decision possible.  Did any one else discuss incisions BEFORE surgery with there BS or did you just leave it to the surgeon to decide?

Kelly   

So sorry to hear you have to go through chemo again, but you've been there once before and you can do it again, we'll be here for you this time!!!   I know last time I went through chemo back in 1990 there were absolutely no support groups or internet groups of course and I felt so alone and scared. How are you doing the past few days?  Just a thought, do you have a recliner or are you able to borrow one for a few weeks?  Have heard a few women mention that they have found them useful for catching some ZZZZZ's, I think I am going to look into borrowing one for after my surgery.  Sending you lots of healing thoughts!

Nadine

So glad thing seem to be going well for you since your surgery, with no skin issues etc, it's very encouraging! My skin does look just fine as well so fingers crossed.  Please do keep us updated on your progress!  I think you are right about going slow, it seems there are many more complications when things move swiftly.

Huskylover

Welcome!  Glad you found this thread.  My PS told me that TE are safer, as there is a higher risk for rejection and skin infection with going with direct to implant with alloderm, although I have to say this option really has me thinking and I am planning on doing some more poking around to see if anyone on this site has done this successfully after radiation, will let you know if I find anyone!  My BS does not seem keen on the NSM, because he thinks they often don't have very good symmetry afterwards, did your surgeon mention this to you?

Take care everyone!

Lisette

Kelley,

I am praying for you and hope your surgery went well. If you have JP drains remember to strip them often

Jami

Hello Nadine,

They want to wait to see how the tumors are responding to the treatment. I am in a trail to make Lapatnib a first line BC treatment drug, It is being used right now as a second line BC chemo for Mets. If the tumors are shrinking, then the micro cancer cells will be killed too. Many times Cancer returns because the treatment was not effective in fully destroying the cancer. If the tumors are removed there is no way to see if the treatment is killing the cancer. By the time I have my mastectomy, there should be no evidence of tumor at all (amazing!) This way, women can opt for skin saving mastectomy or lumpectomy. Chance of cancer return is very, very low this way.

I hope this answered the question

I am trying to think about the positive things new breast bring. Sometimes it helps me and other times I cry too. I believe it's normal and we need to go through the grieving process, we are losing a part of our body. Don't be to hard on yourself. If you cry more times some days and less others know you are not alone ox!

Jami

Hello All,

Well yesterday was the first day of clinical trial. I had another mediport placed (I would recommend this to all taking any chemo). They started me out with pre-treatment medication benadryl and deximethisone. Next, I had the Taxol. When that was finished I took the 3 horse size pills of Lapatinib. Last, Herceptin IV drip. So to sum it up I have 2 IV meds and 1 oral medication. The Lapatinib is taken daily and the chemo's are given weekly for 16 weeks. After all treatments I will get my BMX (yikes!) I am hoping that I can have a skin and nipple sparing MX. No radiation for me because I had the max with the HD (that gave me 20 years of remission and now BC) I have some wonderful news to share and I hope it helps others going through this scary treatment again. I have not had an nausea so far. That is huge for me because I hugged the toilet almost my whole treated with HD. I had some anxiety with the HD treatment and so far I have not had any issues. I wonder if the server nausea and vomiting was part of the cause?? I don't have anxiety under any other conditions in life (weird!). The only side effects I have noticed is a am super (and I mean super) gassy!! My poor family!! I read my bible and listened to praise music while getting my 5 hour infusion. I had a wonderful lady come talk to me about being 5 different ladies.

Here is the story:

Get 5 different wigs and become 5 different ladies. Each wig represents a different mood. Some days are more somber and require a more conservative wig. Other days you feel good and those days deserve a fun wig. As she put it in her thick Spain accent, "And honey, the days you feel good make your man take you dancing and wear a long curly wig and live."

I loved her advice! I came home and told my husband we need to take dance lessons (we both have left feet and dancing with the stars would never look at us lol!) He was all on board and now I have another great thing to look forward to.

Lets make the best of this and find the good, find the joy, and find the peace

Praying for each lady on this site, please do the same for me!

Jami <><

Hello Kelly,

I was wondering how you were doing? Did you start your treatment yet? I have taken 2 treatment so far and I started having side effects a couple of days ago. I am taking Herceptin, Taxol, and Lapatinib. They are not taking my breasts until chemo treatment is done (16 wks). I am hoping for a nipple and skin sparing mastectomy (still up in the air). I am not sure if you are having nausea, I hope not! I am taking anti nausea medication everyday needed or not. It seems to be working for me. I hope you can find the strength today to find something wonderful like going outside and breathing the clean air and listening to the birds sing. Even though you feel bad, it makes me feel well to do something not cancer!

Here's a hug from a stranger and a prayer for good cheer!

Jami

Jami I love your quote for the day... I hope that rash clears up for you and pray that your tumors continue to shrink.  May God be with you through your journey.  As for the nausea I also pray you continue to be nausea free as I too had severe nausea and vomiting when I went through chemo for HD.  But that was when I was 16 and was in 1980 and of course they gave you nothing for nausea. 

I didn't have mantle radiation with the HD so with BC I had it and didn't have a MX. I had a partial MX (or a large lumpectomy).  At any rate the radiation shrank my breast and I had a reduction and lifts bilaterally a little over a year a go.  It is nice to feel positive about yourself after everything we have been through. 

Renee 

Tomorrow is the day!  My first chemo treatment!  I'm a bundle of nerves thinking of the unknown.  Thank you for all of your support and well wishes! 

Good luck Jami I hope things continue to go well for you during your treatments.  Take care and get plenty of rest.