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Marilyn Raven

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    NSW Australia
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    Lung cancer patient/survivor
  • Interests
    Getting well walking my dog and art

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  1. Welcome Shannon I am from Australia and just started on this journey so my knowledge is limited, however the people on this forum are wonderful and have a lot of experience. and most from the USA. I just wanted to welcome you and wish you and Daniel the best. Blessings Maz
  2. Oh thanks Tom I think she would like to do something similar here in Oz through the Australian Lung foundation. I have found this forum extremely helpful and I am as ready as I can be for my surgery in June, a Mini Thoracotomy a smaller incision and less rib separation apparently my fingers are crossed, it's a method used to replace heart valves and since this beastie is near my pulmonary artery I guess that's near to my heart anyway feeling positive and taking things one step at a time. I have hired the recliner bought myself a wedge etc and she was very impressed that I had found all this info, perhaps the Aussie Lung Foundation could provide a link here for lung cancer patients I will mention it next time I speak to her in a month or so after my surgery. Blessings
  3. Thanks for sharing your wisdom born of experience I am so grateful I found this forum. I spoke to a Lung Cancer nurse yesterday from the Australian Lung foundation, and she asked where I had found my information I told her it from from this forum and told her it was a shame that we had nothing like this in Oz, her name is Nicole and she said she was going to look the forum up and join if she could so she can see how it works and perhaps replicate it here, I really hope she can do that.
  4. Thanks ChiMama, Yes feeling better knowing what will happen, funny everything went wrong with the first docs appointment, we parked in the wrong carpark, so my daughter had to rush to drop me off while she parked the car so she missed most of the appointment, one of the receptionists was quite unpleasant and judgmental especially when I was making the appointment, so I had a negative feeling even before seeing him, then he told me what he proposed but said well it may not be cancer but there's only one way to know, I sitting there thinking Wow! a huge surgery just in case ummm no thanks so I waited, I am glad I did because he refused to explain to my oncologist why he wouldn't do VATS and told him just to keep watching it my Onc was not impressed so now here I am. Wish you well and thanks for your support. Blessings Maz ❤️
  5. Thanks so much Lexie, so far he is talking about just taking a piece of my RUL but won't decide until he looks, he is Malay and has small very fine hands that and he seems to be a type for fine detail perhaps that's why he can keep the incision small, he said I won't notice much difference I sincerely hope he right, but in the end I have no choice but to surrender to the process and hope for the best. I have been reading your posts and I hope that everything works out, I am sending you good vibes for a great outcome, and thank you for the encouragement. May the force be with you Blessings Maz ❤️
  6. Thanks Jesse, Yes I agree about the communication I had a muddled conversation with the first doc which is why I decided to wait, and have another scan, anyway I feel it's for the best because although this surgeon is older than the other one, he is a professor and very skilled and experienced and he had a very calm manner and direct clear communication. It's scary stuff but I am taking deep breaths and reminding myself of how lucky I am to access to good medical as you do in the USA. so many people in the world are not so lucky, so I count my blessings and smile it always makes me fell better even if it's hard to do sometimes. Good health and happiness to you. Blessings Maz ❤️ PS. I noticed my nodule is almost the exact same size 1.4 x1.8 and is near my pulmonary artery and the margin of my middle lobe so who knows what I will end up with when I awaken from the deep sleep. Fingers crossed tis all I can do oh and smile as often as possible.
  7. Hi all. Here I am again I have surgery booked 10th June 1 day before my 74th birthday, so survival, no complications and a smooth recovery would be a great birthday gift for me my fingers are crossed. Sadly though it will be an open surgery, yesterday I saw a senior surgeon a Professor, and he has explained to me why I have to have an open surgery this tumor is too close to my pulmonary artery for VATS but he says I will not notice any difference as he will keep the incision small and on my right side not my back I hope he is right as I am not looking forward to this at all, but I have to keep walking and hope for the best, just as we all do. The PET showed it had grown 2mm since last September and the SUV has gone from 1.6 to 2.7 so time to get rid of the little menace, it's under 2cms and very low grade so all being well and no surprises, I am hopeful no further treatment will be required. Thank you all so much I have found this forum so supportive and hopeful, for a girl all the way over the sea in OZ. Blessings and love to all you brave men and women survivors. Maz ❤️
  8. Thanks Lou I will post again when I get some news, I just find the fact that the surgeon isn't interested in explaining his decision makes me feel uneasy, if he would be prepared to explain why skipping a biopsy and going straight to VAT surgery is not an option I would like to know his reasons, perhaps he is one of those docs that wants the patient to do as they are told, I will look for another surgeon who will be prepared explain all my options, this is way too serious at 74 not be be my own advocate, BTW my oncologist seems to agree with me, and spoke briefly to the surgeon but the surgeon just told him to keep monitoring me, a second opinion seems best to me. All the best to you, stay well Maz
  9. Thanks for you reply I appreciate you sharing your experience, indeed there are often surprises both good and bad with cancer treatment, I always hope for the best and try not to focus and what else may happen and just deal with whatever arises as best I can. I am 74 so I am hoping for the least invasive procedure that I can have, the surgeon that I saw last year doesn't appear to be interested in discussing a different option to the open surgery where he will take a small portion send it off and then if it is a cancer he will take the middle lobe of my right lung, my preference is to skip the biopsy and just do the surgery with VAT the fact that he won't discuss this with me doesn't fill me with confidence and seems a wee bit authoritarian so I don't know if he has a good reason or not, so I think a second opinion is my best plan. I will write here again when I find out what the next step is fingers crossed I can het some answers. I wish you well with your treatment and hope that is is successful.
  10. Thanks Bridget, that's my been my research too, my oncologist isn't keen for me to have open surgery either, because he understands how serious that is and for me at my age almost 74 he is trying to avoid it if possible. The surgeon didn't want to speak to me when my oncologist called him to ask whether he would consider VAT and skip the biopsy, he came back to me and said he doesn't want to see you and told me to continue to monitor and then he said I think I might send you to another doctor, which I am happy about because the fact that he doesn't want even discuss with me his reasoning about why he is insistent on open surgery doesn't fill me with confidence so I will be seeking another doc either through the Cancer Centre of via my GP. I hope I can get an an answer soon because the waiting and the mess around I could live without. I will keep you posted after my PET Monday 11th I expect to hear back from the oncologist a couple of days later. Fingers crossed that the PET is not worse than before, I have no symptoms at all so I have no idea. Thanks for your reply and be well, blessings ❤️
  11. I finally heard from my oncologist last week he is sending me for another PET and the surgeon refused to just go straight to a lobectomy and wants to do it with an open surgery to see if it is cancer, I have a strong feeling it is a very slow growing cancer, so I said no! My oncologist said he might refer me to another surgeon if not I will go back to my GP and get a referral from him. I have decided that I do not want an open surgery for such a small tumor so I will look until I find a surgeon willing to operate without a biopsy, still concerned about surgery but I am sure I will recover better from VAT than open, I have had spirometry done and my lung capacity is normal for my age so I should survive okay. Fingers crosses that the PET does not look worse than last August and that I can get this over and done with and get on with recovery. I continue to read here and have found the information and support on this forum just wonderful I am grateful to have found it as there seems to be nothing like this in Oz. Sending good thoughts love and blessings to all.
  12. Hi Bridget. Just a quick update, I saw my GP this morning and he suggested waiting for the Cancer Team meeting to see what they suggest if the option doesn't change he will refer me to another surgeon, so now I wait and have my lung function test to make sure I am a fit candidate for surgery I am sure it will be okay but you never know. I appreciate your interest in my progress along the path. Blessings Marilyn
  13. Thanks Bridget I am waiting now to hear from my oncologist who will relay what the cancer team has to say, and I am seeing my GP tomorrow to get a referral to a surgeon for a second opinion, although I think the first doc was being conservative in not wanting to remove part of my lung unless it was necessary, he may have a different view now that it has grown a little I am sure that it is a cancer and would like to get rid of it ASAP but with VATS not open surgery so fingers crossed I will get it sorted over the next month, I will keep posting as things go along. I saw the post today from the the poster in the UK, I know what she means about the English not wanting to talk about things I cannot find a forum in Oz either, I had no trouble for my Hysterectomy, but lung cancer seems to be something people don't want to discuss, I think that many people see it as a death sentence. This has freaked my daughter out a bit she is 55 and an ex smoker too I have suggested she ask her doc for a baseline scan and then it can be monitored, because the sooner it's found the better the chances, I would have no idea I had this if I hadn't been getting scans because of my other cancer, and goodness knows how big it may have got before I noticed anything was there, I think all ex smokers could have regular scans perhaps every 2 years like breast screening anyway I digress. Blessings Marilyn
  14. Thanks so much for your reply, yep I think it will be surgery it's just which kind, I am going to opt for keyhole type as it seems to be an easier recovery than the open surgery, I would take the precision radiation if it were possible, but it's not an option for this one it's in the wrong place, I trust my oncologist and he is very skilled. Anyway next step is a second opinion from another surgeon, fingers crossed that I can opt to lose the middle lobe of my right lung without a biopsy. I have had this nodule for 4 years that I know of and it has grown about 5mm in that time so it's a very slow growing beastie but time to get rid of it as it's now 1.4 cms. I am not looking forward to this at 73 but hey I made it through my first 70 without any surgery at all, so I feel blessed, fingers crossed all will be well. When I know what is going to happen I will welcome any helpful tips you can share. Blessings Maz
  15. Thanks Tom, I think that will be the direction for me too, I will seek a second opinion and also speak to the surgeon I saw at the Cancer Centre, perhaps he was being very conservative but I am sure if I am willing to trade a part of my lung for a quicker recovery I will be better off in the end. I have written a longer reply to Bridget which explains my journey and my feeling about serious surgery in my 70s. Blessings
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