Everything old is new again - unfortunately.
Not handling this too well as, it's my sixth tumour/cancer. Part of my skull taken away - Brain tumour, bladder cut & lasered - Bladder cancer, Para-thyroid node missing - tumour, Sigmoid colon missing - Bowel cancer, bits of my elbow gone - Melanoma and now no boobs!
I really do wonder how much more this body can take? Added to all this, last Christmas (2012) I had a 95% blocked carotid artery (the one that feeds blood & oxygen to the brain) and no surgeon (at least on the Sunshine Coast) would go near me for fear of a stroke. I found a wonderful man at the Wesley Hospital who, literally saved my life.
So, I read about how everyone feels upon diagnosis and believe me, it does not get any easier the sixth time around. The only small consolation is, all were primaries.
I have cried & cried once again & now, one of the worst things this time around (apart from surgery) is the seroma which is extremely painful. Have had it aspirated twice already and as fast as it is taken away, the cavity fills in lumps again.
Hope I can make it through again. Doesn't feel like it right now & my body is so tired.
Maxine
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I am so sorry to read your blog,and really marvel at how you can get through this.I couldn't look at myself in the mirror either,and I only had a single mastectomy and nothing else!Maxine,all I can say is,that if it helps at all,I am always here(as are lots of other ladies)to lend an ear if you need someone to talk to.I hope that your seroma clears up soon as you really don't need any more pain.Thinking of you.xoxoxo Robyn0
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Hi Maxine, Sorry to hear of your ongoing battles with cancer. To have had it 6 times is very unlucky. Having said that, you must be pretty tough to have recovered from each one. You must have a really good body for recovery, which is good. I have been through a single, and then double mastectomy, so I remember how awful seeing my flat chest was. It does get easier to accept with time, and now that I have had reconstruction with implants, I don't find them too bad at all. Have you received your "My Journey Kit" free from this site yet? You find a link for it if you hit the top panel for new Diagnosis. It will be posted to you and is full of wonderful information to help you to understand what is happening. Please feel free to come on here with any questions or concerns you may have. There is always someone who is able to help.
Love Chris xx0 -
Hi Maxine, Sorry to hear of your ongoing battles with cancer. To have had it 6 times is very unlucky. Having said that, you must be pretty tough to have recovered from each one. You must have a really good body for recovery, which is good. I have been through a single, and then double mastectomy, so I remember how awful seeing my flat chest was. It does get easier to accept with time, and now that I have had reconstruction with implants, I don't find them too bad at all. Have you received your "My Journey Kit" free from this site yet? You find a link for it if you hit the top panel for new Diagnosis. It will be posted to you and is full of wonderful information to help you to understand what is happening. Please feel free to come on here with any questions or concerns you may have. There is always someone who is able to help.
Love Chris xx0 -
I, too, am a bit speechless. Having a few bad days myself, but not as unfortunate at yourself. You must be a strong woman, I know this because you are here to contact us today. Please try to stay strong and come onto this site to vent anytime. We will try to comfort you, lots of love,
Hazel xx
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Thank you Robyn, Chris and Tonya for your words of support. They are very much appreciated. Yes, Chris I have the My Journey Kit - one of the things I don't understand is the term 'your breast care team' ? Soon (after the surgeon has finished with me) my 'team' will be my husband and my GP. Is that the team they speak of?
I think I am in a bit of a hurry to look 'normal' again & have untold questions about prosthesis but with these lumps (the seroma) it seems way off. Have had a double mastectomy so it is both sides but worse where I had the sentinel node taken. God help me if I get lymphoedema.
Still really grumpy - could be the weather! Very hot here, thank goodness for aircon.
Max0 -
Thank you Robyn, Chris and Tonya for your words of support. They are very much appreciated. Yes, Chris I have the My Journey Kit - one of the things I don't understand is the term 'your breast care team' ? Soon (after the surgeon has finished with me) my 'team' will be my husband and my GP. Is that the team they speak of?
I think I am in a bit of a hurry to look 'normal' again & have untold questions about prosthesis but with these lumps (the seroma) it seems way off. Have had a double mastectomy so it is both sides but worse where I had the sentinel node taken. God help me if I get lymphoedema.
Still really grumpy - could be the weather! Very hot here, thank goodness for aircon.
Max0 -
Hi Maxine, your breast care team will be your surgeon, oncologist, breast care nurse, and physio. Your husband and GP will also be part of your support team.
If you are considering reconstruction, there is a private group on this site called "Breast Reconstruction". You need to ask to join, and you will be accepted. there are many members and we have all posted photos of our reconstructions, and many questions are asked about it and answered. Louise Turner is the facilitator, but if you do a search on the top right side of the page, you will find the group.
Hopefully you won't get lymphodema from your sentinel node biopsy. It would be unlikely, and the swelling you are experiencing is probably from the seroma, which should settle with time.
I am worried about lymphodema at present, as i have had 10 nodes removed and had some of it in the past. 3 weeks ago I fell and broke my right upper arm in 3 places, and being my lymphodema side I am quite concerned. It blew up like a balloon, and I had to keep it still for 2 weeks, and for lymphodema you need to move it. Anyway, I am pleased to say that all the swelling is starting to recede, so I am hopeful that with time it go and not present an ongoing problem. I have a physio helping with the break, and lymphodema. Early intervention is the best thing, so if you have any symptoms see a breast physio promptly.
love Chris xx0 -
Here I am after 1.00am cos I am in so much darn pain. Had the seromas drained for the 3rd time today & it seems each time I have it done, I get more pain after.
I guess this too will pass but meantime, it is a real bitch!
Even had a little cry before I got up to type this. Still holding a lot in tho even so, trying to save my energy to heal.0 -
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 .0 -
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.0 -
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 xx0
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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.
Max0 -
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
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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
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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
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