Hodgkin's Lymphoma

Yep - I'm the same as you, @Dh5Wy83 -  with no family history of BC ANYWHERE - my family usually dies from heart attacks, so I'd always been a bit 'smug' .... but not now!!  It can hit ANYONE at ANY stage of life!  :(  (I didn't have Hodgkin's - but have friends  who have and are fit & well today, 20+ years later.)   That's Good that it hasn't spread ..... is yours Invasive Lobular or one of the others?  We have a group where info is put up re ILC (I am in it.)

I hope you've recovered well from your surgery - it sure looks like you made the right decisions.

Here's a 'search' on the blog for Hodgkin's ..... check it out ....
https://onlinenetwork.bcna.org.au/search?Search=Hodgkin%27s+lymphoma

With a bit of luck, you'll be one of the lucky ones who DON'T get side effects - I have friend's mothers who were on it for 10 years & tolerated it quite well (it is the only one that I HAVEN'T tried!  LOL) ...... I think hot flushes is one of the nasties with Tamoxifen - but just give it a go & try not to second guess it. xx. You'll realise pretty quickly if you ARE being affected!  Fingers crossed, NOT!  We don't always hear of the success stories (re no side effects) as usually they have no reason to be complaining so don't frequent the forum .. So many Side Effects can be 'treated' or 'tolerated' with different strategies ..... in the USA, Tart Cherry Juice is supposed to help - not sure if anyone has tried it on this blog!

Weird, isn't it - you'd have thought that the chemo & rads you went thru previously should have knocked ANY cancer cells on the head ..... but we all know that isn't always the case! :( 

Yes - many think that once you've had your surgery that you are 'better' ..... but it is way more complex than that.  Most of us find that others whinging about not being able to find a particular colour in nail polish or similar 'outrages' to be amazingly insincere & trivial, when compared to what we are all going thru ..... and as you know, with the ongoing checks etc, you can never really 'forget' that you've had it either!  grrr

Take care, I am sure someone who's had Hodgkins will jump on - or if you reply to any of the threads in the 'search' - it will re-activate that thread and the people who've commented on it, will be notified!

Take care xx

Thanks for your response, arpie.

I had surgery a couple of weeks ago. I underwent bilateral skin sparing mastectomy and immediate DIEP flap reconstruction. I am due to start Tamoxifen.

My previous diagnosis and treatment has effected the treatment recommendations made by my treating team. It has also played a role in my own decision making process. The first being that I was not able to undergo radiotherapy. The biggest decision, though, has been removing both breasts and nipples.

The problem with the Hodgkin's lymphoma and Hodgkin's treatment regime is that is good at getting rid of the Hodgkins's but it is also very good at causing other health problems later on down the track- breast cancer (as well as several other cancers eg lung cancer, melanoma, lymphoma and leukaemia) being one of them.

I started breast cancer screening once I was past the 5 year post treatment mark. I feel extremely fortunate. I have been able to access breast MRI as part of that screening process. I have also been doing the breast cancer screening through a breast cancer clinic that screens people who don't have cancer but are high risk of developing breast cancer in the future (due to strong family history, BRACA 1 and 2 or a history of hodgkin's lymphoma). Because of this screening process, the cancer has been detected before it has had a chance to spread. Because the cancer has been detected so early, has also meant I have been able to avoid having to undergo more chemotherapy (thank goodness!).

I underwent full mantle radiotherapy for the hodgkin's which means that both breasts have been irradiated. That was why I decided to remove both breasts. Invasive breast cancer was later detected in the tissue removed during the lumpectomy (of my right breast). This prompted my decision to remove both breasts as well as both nipples. The pathology of the breast tissue from the mastectomy found DCIS in tissue from the right and left breasts and another patch of invasive breast cancer was detected in tissue of the right breast. As my surgeon said- the pathology results have justified (and supported my decision) removing all of the breast tissue.

I feel nervous about starting the Tamoxifen (and extremely relieved at not having to undergo more chemo). I have heard about some of the side effects of anti-hormone treatment. My main concerns are the impact it could have on my ability to work (I am on my feet all day) and to ride my horse. Quality of life is extremely important to me. I keep stressing this to my doctors and I am grateful that they are listening, acknowledging and respecting this. I refused breast implants due to the potential health issues associated with them and I refused to have abdominal muscle removed during the reconstruction as I do not want the muscle weakness associated with doing that. 

I agree with your comment about how each person living with cancer is unique. When I have been disclosing my breast cancer diagnosis, the first thing I am asked is "do you have a family history". I reply "no" and "I have had treatment for hodgkin's lymphoma". That is something I am interest to find- if there are other people who have developed breast cancer as a late effect of previous cancer treatment. What is their unique story? How are they travelling?

I guess that is something that saddens and frustrates me sometimes. The lack of awareness of the impact that cancer and its treatment has on your life and your health when you undergo treatment at younger age. I remember, the first cancer support group I ever attended, being told- "you are young so you're going to be fine".

 I am So sorry to see you here @Dh5Wy83 ... Welcome to the club that no-one really wants to join!  Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you.  Nothing is off limits.  We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you.

Have you had your surgery and got your ‘game plan’?  

you can put any word or phrase in the ‘search’ box of the Discussions page... and any previous threads where they’ve been mentioned will pop up to read.

 I hope you are coping ok with this more recent diagnosis.  :(  It would be totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist.  Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... cos it mucks with your brain as much as your body!

That’s a really nasty double hit you’ve had ...  how is that previous treatment going to affect your current treatment?  Specially the radiation? 

Difficult tho it may seem, Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner' 
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
 and if into your garden, a Gardening post as well!! 
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
We even have a funny Xmas page .... feel free to add any that you’ve seen!
https://onlinenetwork.bcna.org.au/discussion/20086/christmas-funnies-put-them-up-here-for-a-laugh#latest

Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it may only scare the pants off you! :( 

take care, you can do this xxx