Everything old is new again - unfortunately.

Hi Maxi, There is a free exercise and water class available to all breast cancer patients in NSW, and possibly elsewhere. It is called the ENCORE program and consists of 8 classes. If you google Encore you will probably find it. Someone else on this site might also be able to help. I never took advantage of this program, as I was well taken care of, but I don't think there is a time limit on this. The ENCORE program moves around to different areas to pick up people who need this help. This is run by YMCA, so try and contact them to see if they have something coming to your area, or if they can recommend anything. Good luck, and I hope you find the support you need. We are good for listening and helping where possible, so maybe put out a question for other ladies who are in your area who might be able to point you in the right direction.

Hi Maxine,

Forgot to add this bit about seromas - I know the books say to use warm packs to give relief but my physio (also my lymphodema therapist) said to try cold packs instead. They explained that if it is lymph fluid the heat will draw it to the area more while the cold will take it away. Tried it myself and got much better relief with the cold packs (only works if it is lymph fluid). Have also been taught, and hubby been shown, by therapist how to use self massage to help take lymph fluid away and help it drain. This all has helped to the extent that I have yet to need any seroma drained.

You can check the lymphodema therapists/practioners website for ceritfied therapists in your area. If you are lucky, they may also be physios who can help with all of that side of your treatment. If you have trouble finding it, let me know and I will post a link. Good luck!

Tracy xxx 

Hi Maxine,

Can't believe what you have been through and still having to go through. I can relate in some ways - this was my 3rd cancer (brain, aggressive, invasive thyroid then breast). I had to have external beam radiation to finally get rid of the thyroid cancer - which increased my risk of getting breast cancer (a small increased risk) - and lucky me - I got it!

Had a few options as to treatment and chose left breast mastectomy. Surgeon took sentinel lymph node too - all clear margins and node was clear.

Surgeon was same one who did my first thyroid removal and had been kept in the loop by others as to what was going on - so it made it easier going back to him.

In my case, due to previous treatment/surgeries, I was advised against any more radiation or chemo - the negatives (have had multiple surgeries to trachea and narrowed airway and paralyzed right vocal cord) would far outweigh any positives - and would mean only a difference of 2% over my 10 year survival rate.

I still see the surgeon who took over my neck stuff (every 6 months), the oncologist still sees me (every 6 months - alternates with the neck surgeon so I see one of them every 3 months) and the breast surgeon will be seeing me every 3 months - and the head surgeon still sees me yearly. I also have a couple of physois that I see privately who I have a great relationship with (see one of them monthly - more frequently since surgery but will most likely go back to the monthly visits as I improve. All of these people are considered, along with the GP, part of my health care team (since it didn't just start with the breast cancer). They all send letters and call each other - consider myself very lucky to have so many specialists who willing work together so well! Since there is a risk that the thyroid cancer can come back, all wanted to remain in the loop and keep seeing me so, if it does, they already know exactly what has been going on. Breast surgeon told me that after all I have done (as if I had a choice) they will all be keeping a close eye on me from now on - ëxpect to be under a microscope for the next few years" were his exact words!

Can't believe the difference in our experiences - none of my specialists have had the attitude of "got the cancer, off you go". Counting myself lucky and blessed in that regard. If you have private health insurance, ask about continuing to see the specialists and a private physio - establish good relationships with them yourself and ask them to write to the others - and your GP. One thing I have learnt from all I have been through is that I take responsibility for my care and I insist on what I know I need by way of getting me through it all. Take charge and ask more questions - it is your health and your body - you know what feels right or not. If you are willing (and able to pay) it should be up to you if you want to keep seeing anyone - even if only to feel more supported - and in case anything more comes your way! Hoping it won't. Been through too much already. Talk to your breast surgeon and explain how you are feeling. Hopefully they can then help you get a team together that makes you feel supported - anything would be better than now!

Wishing you all the best of health for the future - and hope it is the end of your cancer fights!

Tracy xxx

Hi Maxine,

Can't believe what you have been through and still having to go through. I can relate in some ways - this was my 3rd cancer (brain, aggressive, invasive thyroid then breast). I had to have external beam radiation to finally get rid of the thyroid cancer - which increased my risk of getting breast cancer (a small increased risk) - and lucky me - I got it!

Had a few options as to treatment and chose left breast mastectomy. Surgeon took sentinel lymph node too - all clear margins and node was clear.

Surgeon was same one who did my first thyroid removal and had been kept in the loop by others as to what was going on - so it made it easier going back to him.

In my case, due to previous treatment/surgeries, I was advised against any more radiation or chemo - the negatives (have had multiple surgeries to trachea and narrowed airway and paralyzed right vocal cord) would far outweigh any positives - and would mean only a difference of 2% over my 10 year survival rate.

I still see the surgeon who took over my neck stuff (every 6 months), the oncologist still sees me (every 6 months - alternates with the neck surgeon so I see one of them every 3 months) and the breast surgeon will be seeing me every 3 months - and the head surgeon still sees me yearly. I also have a couple of physois that I see privately who I have a great relationship with (see one of them monthly - more frequently since surgery but will most likely go back to the monthly visits as I improve. All of these people are considered, along with the GP, part of my health care team (since it didn't just start with the breast cancer). They all send letters and call each other - consider myself very lucky to have so many specialists who willing work together so well! Since there is a risk that the thyroid cancer can come back, all wanted to remain in the loop and keep seeing me so, if it does, they already know exactly what has been going on. Breast surgeon told me that after all I have done (as if I had a choice) they will all be keeping a close eye on me from now on - ëxpect to be under a microscope for the next few years" were his exact words!

Can't believe the difference in our experiences - none of my specialists have had the attitude of "got the cancer, off you go". Counting myself lucky and blessed in that regard. If you have private health insurance, ask about continuing to see the specialists and a private physio - establish good relationships with them yourself and ask them to write to the others - and your GP. One thing I have learnt from all I have been through is that I take responsibility for my care and I insist on what I know I need by way of getting me through it all. Take charge and ask more questions - it is your health and your body - you know what feels right or not. If you are willing (and able to pay) it should be up to you if you want to keep seeing anyone - even if only to feel more supported - and in case anything more comes your way! Hoping it won't. Been through too much already. Talk to your breast surgeon and explain how you are feeling. Hopefully they can then help you get a team together that makes you feel supported - anything would be better than now!

Wishing you all the best of health for the future - and hope it is the end of your cancer fights!

Tracy xxx

Hi Maxine,

Can't believe what you have been through and still having to go through. I can relate in some ways - this was my 3rd cancer (brain, aggressive, invasive thyroid then breast). I had to have external beam radiation to finally get rid of the thyroid cancer - which increased my risk of getting breast cancer (a small increased risk) - and lucky me - I got it!

Had a few options as to treatment and chose left breast mastectomy. Surgeon took sentinel lymph node too - all clear margins and node was clear.

Surgeon was same one who did my first thyroid removal and had been kept in the loop by others as to what was going on - so it made it easier going back to him.

In my case, due to previous treatment/surgeries, I was advised against any more radiation or chemo - the negatives (have had multiple surgeries to trachea and narrowed airway and paralyzed right vocal cord) would far outweigh any positives - and would mean only a difference of 2% over my 10 year survival rate.

I still see the surgeon who took over my neck stuff (every 6 months), the oncologist still sees me (every 6 months - alternates with the neck surgeon so I see one of them every 3 months) and the breast surgeon will be seeing me every 3 months - and the head surgeon still sees me yearly. I also have a couple of physois that I see privately who I have a great relationship with (see one of them monthly - more frequently since surgery but will most likely go back to the monthly visits as I improve. All of these people are considered, along with the GP, part of my health care team (since it didn't just start with the breast cancer). They all send letters and call each other - consider myself very lucky to have so many specialists who willing work together so well! Since there is a risk that the thyroid cancer can come back, all wanted to remain in the loop and keep seeing me so, if it does, they already know exactly what has been going on. Breast surgeon told me that after all I have done (as if I had a choice) they will all be keeping a close eye on me from now on - ëxpect to be under a microscope for the next few years" were his exact words!

Can't believe the difference in our experiences - none of my specialists have had the attitude of "got the cancer, off you go". Counting myself lucky and blessed in that regard. If you have private health insurance, ask about continuing to see the specialists and a private physio - establish good relationships with them yourself and ask them to write to the others - and your GP. One thing I have learnt from all I have been through is that I take responsibility for my care and I insist on what I know I need by way of getting me through it all. Take charge and ask more questions - it is your health and your body - you know what feels right or not. If you are willing (and able to pay) it should be up to you if you want to keep seeing anyone - even if only to feel more supported - and in case anything more comes your way! Hoping it won't. Been through too much already. Talk to your breast surgeon and explain how you are feeling. Hopefully they can then help you get a team together that makes you feel supported - anything would be better than now!

Wishing you all the best of health for the future - and hope it is the end of your cancer fights!

Tracy xxx

OMG - have just not heard of anything like the support you received & it actually brings me to tears again realising I have nothing like any of this. If only I had water classes etc. I do thank you for explaining what happened to you but sadly, it cannot help locate a support team that does not exist. I will ask my surgeon I'd anything else is available but feel sure the Cancer Council would have told me as I have called in and asked. We live on the Sunshine Coast Qld. My surgeon was lovely but, the physio. as I said, only called into my hospital room for about 5mins & left? So long as 'they' have got the cancer, that seems to be all they care about. I am quite down about it all. Max

Hi Maxi, which hospital did you attend? I attended the SAN at Wahroonga in Sydney. It was so good, and they had a multi-disiplinary team that consisted of all those I mentioned. My Breast care nurse made contact straight away, and then phoned weekly and then fortnightly for the duration of my treatment. She also attended the weekly support group meetings for any group questions. The other breast care nurse visited daily in hospital. THe physio came daily, and put me in contact with the physio department who ran specific exercise and water classes for breast cancer patients. From here I found out about the lymphodema treatments. All of these treatments cost money, but my health fund gave me rebates for all, and were very generous with the lymphodema program. I am 3 years out from diagnosis, and still see my surgeon and oncologist yearly. Both are spaced so I am still seeing someone each 6 months. Had I not moved to Perth in the last year, I would still be doing the exercise class. I haven't located anything similar in Perth yet, though I have found a good physio, who can look after my fractured arm, and any lymphodema that may arise. I spoke with both my old breast surgeon and physio on the phone to get recommendations about what I should do re my broken arm, and have now happily got a plan in place. Ask your surgeon who you can ring if you need some advise. I hope some of this helps you to locate your support team. love from Chris xx

Hi Chris, One only has an oncologist if you are having chemo which, I am fortunately am not. I feel once I have had a few check-ups, I can no longer class my surgeon as part of my team. Physio, what physio my love? One came into the hospital, gave a super quick run down on exercises, left a pamphlet & left! Breast care nurse, have spoken to her only on the phone. So, that leaves my husband & my GP who is draining my super painful seromas. The mere thought of chemo leaves me cold as I had chemo for my bowel cancer only to find I was severely allergic to the 5FU chemo. I have an enzyme deficiency in which my body does not break down the chemo. It ate away part of my insides resulting in a gangrenous gall bladder which had to be removed. The pain was unbelievable. I was rushed into hospital again where they operated to save my life yet again. My gall bladder was removed & I was in intensive care for 3days. Hence, my fear of chemo.

Thank you for your words of support. I can say though that having the seromas drained does help a lot & it does not hurt at all as they go into the wound site which us quite numb. I wish you well in all you chose to do .